Thursday, August 21, 2014

Wednesday, December 16, 2009 judy, Community Member, asks

Q: Is Vyvanse causing my health problems?

I started taking Vyvanse 18 months ago.  For the most part I have been very happy with it.  I currently take 40mg.

 

My side-effects after first starting Vyvanse (30mg) dry mouth, weight loss and easy bruising.  Within 4-5 months symptoms were gone, even with increasing dose.

 

About 6 months after being on Vyvanse I started having some health issues.  I would wake up a lot of morning feeling achy, almost as if I was coming down with something.  As soon as I took the Vyvanse and it started working I felt fine.  With time my health started going down hill.  My fingers on  both hands became constantly numb, trying to hold something, write, type ect.. was very painful.  My big toe and toe next to it was numb as well, but i have had this problem for (constant numbing of those 2 toes) for about 3yrs.  About 3 months after having the constant numbness in hands, the joint in my hands started hurting and becoming very stiff. This stayed the same, and from there, within 3 months everything got worse.  Joint pain not only in hands but wrists, jaw, feet, knees and ankles.  The "flu symptoms" seemed to hit about 3 days a week lasting all day to the point i couldn't even get out of bed.  I started getting burning feeling in back (no kidney infection) constantly, having hard time swallowing things, and then started having funny vision (only on days I felt real bad) where I would see flashing white lights, kind of like strob lights. 

 

2 months ago a different set of symptoms set in along with all those perviously mentioned.  I was eating dinner and noticed I couldn't swallow.  Half of my face, right arm and right leg went numb. I knew what was going on, but felt spaced out and that trying to talk would be near impossible.  For 24-48hrs after right side of body was very weak and almost hurt.  Started getting very bad dizy spells (only when walking) and had these episodes of numbness happening to me several times over the last few months.  I am always in pain, especially in legs, back of calf muscles, feet, arms and jaw. Feel very tired, weak and sick all the time.  Twice in the last month as well,  I have sudden huge bruises appear on right leg running from my knee down to my calf muscle. Middle bruise on calf has a huge knot in it, but blood clots have been ruled out. (through blood work) 

 

I went to my family Dr. 6 weeks ago (after suffering for so long) he did a bunch of blood work, urine test, and all of it came back normal!! (What??) This Dr. sent me to a Nuerologist in which I had a MRI, EEG (not normal, repeating test again today) and an ultrasound of the heart, all which came back normal.  I have told both Dr's about me being on Vyvanse, they never asked or showed any conern about the medication.  I end up asking if this could be a possible cause of all my health problems and they all just look at me funny.  I went off Vyvanse for a few weeks (just decided to myself) to see if I felt there was any change.  There was none, infact I felt worse because the Vyvanse is the only thing that makes me feel somewhat "ok" when it's in me working.  It gives me a bit of energy which I otherwise without it would not have.  I have cut back from 60mg to 40 now in which I am currently taking. 

 

So, my question finally.  It all seems kind of funny symptoms stared after taking Vyvanse, but not until 6 months after being on it. Symptoms happend very gradual, over about an 8 month period.  When I stopped Vyvanse (but only for 2 weeks) nothing was different about my symptoms.  At this point I only take it to help me get through my days and to be able to function.  I feel part crazy with having the Dr's at this point not know what's wrong, but in 2 weeks I am being seen by a Rheumatologist and have other blood test I am currently waiting for results on, one being Lyme.  I was tested for RA, lupus, MS and all came back negative.

 

What are your thoughts on the Vyvanse being the issue with all my problems?  Nothing makes me want to stop taking it when all the Dr's look at me like I'm crazy for even thinking that was the cause, especially when I tried it and nothing changed.

 

Any thoughts or info would be greatly appreciated, I need any help I can get at this point!  (By the way I have never abused the medication but at one time 5-6 months ago when I was talking 60mg of Vyvanse, & it was wearing off, my Dr. took me down to 40mg of Vyvanse, once in the morning, and 20mg of Addrell in the late afternoon usually around 3.  Only did this for 2 months didn't like taking 2 pills in one day, but that's the only change I have had)

Thanks!

 

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Answers (49)
Eileen Bailey, Health Guide
12/16/09 9:46am

Judy

 

Thank you for your question and welcome to ADHDCentral.com.

 

I am not a medical professional and would not be able to diagnose your symptoms or give you medical advice. It sounds as if you are doing the right thing and speaking to doctors about your symptoms and working with the doctors to try to find a cause for your pain.

 

Joint pain is not a common side effect of Vyvanse. The most common side effects include:

  • Headache
  • Nausea/Stomachache
  • Difficulty sleeping
  • Decreased appetite
  • Nervousness
  • Dizziness 

In addition to the common side effects, some people may experience delayed or slowing of height and weight, changes in eyesight or blurred vision. There is a chance of seizures while taking Vyvanse, however, the risk is minimal if there is no previous history or family history of seizures. If there is a history of seizures, please notify your doctor before you or your child begins taking Vyvanse.

 

This is not to say that what you are experiencing is not a side effect since all side effects are not listed, just the most common. From what you have described, however, your doctors do not seem to think these symptoms are being caused by the medication.

 

Please let me know how your retest goes and I hope that you are feeling better soon.

 

Eileen

 

Reply
judy, Community Member
12/20/09 8:59pm

Eileen,

 

Sorry for the late reply, our computer has been having problems.  

 

I just wanted to Thank you for responding to my question.  It's good to know that joint pain is not a common side effect with Vyvanse.  That was kind of the impression I was under, but I guess you never know, I could be one of the few that does, but who knows.

 

I have never had any problems with seizures, or really any health concerns at all, that's why this seems to be so strange to me that all symptoms started after taking Vyvanse, but like I said, not until 6 months later when the first ones started appearing.

 

Thank you so much for your time and concern in responding to me, good luck to you and have a happy holiday season!

Reply
Eileen Bailey, Health Guide
12/23/09 9:53am

I hope that you are feeling better. Hopefully, your doctors will be able to determine what is causing your symptoms.

 

Have a wonderful holiday.

 

Eileen

Reply
pachildress, Community Member
1/ 8/14 9:59am

It's unfortunate that you're experiencing this, but it's kind of a relief for me. I've had the exact same problems since taking vyvanse, and like you I've had blood work after blood work, x-rays, an MRI and countless doctor's appointments, including three specialist. I've been so confused!! My pain, numbness, burning,  etc.seems to cycle. There's never any CERTAIN thing that "triggers" it. All doctors are aware of me taking Vyvanse as well. The rhumatologist did say it could be "some" of the cause because of the stimulation. He also said my diet, which isn't the best could be contributing to some of the problems I'm experiencing. I've received cortozone injections, been on cymalta, elavil, and several other medications with no improvement. Three different doctors have diagnosed me with polymialgia, which I feel is just something they throw out there when they aren't sure. Best of luck to you!

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Marie, Community Member
1/12/14 9:49am
Another one in addition to Judy. I went off vyvanse for months and no improvement...I wonder if the damage was done or if its unrelated. I didn't read anything about breathing issues. Inhave this overall hyperreflexia and one of the doctors believes my lungs are doing the same since my lung function is now at 44%. There's great information on a website called www.majidali.com. There are several topics on the left hand side you can click on and the Dr has a 4-8 minute YouTube video explaining health related illnesses. He talks about neuropathy as well. Check it out. Hope you find it helpful, I I have. I'm looking for hope that they were able to cure this for you? I'm so weak and sore I feel like I ran a marathon. Reply
Marie, Community Member
1/12/14 9:41am
Judy I see your note is from 2009 but I read it and had to respond. I had the exact same experience! Exact! Did you also lose breathlessness'? I'm still very sick, housebound pretty mich. minused to exercise 2 hours a day, walk the dog, cook, work...How are you now? I realize what they have noted as side effects doesn't included our symptoms. However, everyone reacts differently, especially in different combinations with other drugs. Mare you(we're you)taking anything else? Reply
ace, Community Member
12/31/09 1:32pm

vyvanse releases dopamine in your brain in clusters of waves. when a drug does that, your body's natural dopamine releasing functions are slowed. when you don't take the vyvanse, your system will need time to re-adapt to producing its own normal levels of neurotransmitters. i hope you understand what i'm saying because i'm not the best at explaining, but if you get what i'm saying then you'll have your answer. it's up to you, stay on vyvanse forever, or get off of it forever, or take it sparingly and wean off of it. good luck!

Reply
Mom of ADD, Community Member
1/20/10 9:08pm

My son (12 y.o) started taking Vyvanse 20 mg and almost immediately complained of back pain.  I did not connect it to the med's as he said he thought if was due to a keyboarding class he had 1st period.  However, I noticed that when he took it on a Saturday because of a function he had to attend, he complained of back pain.  After 3 weeks we upped the dose from 20 mg to 30 mg and the back pain became unbearable for him, plus hip, elbow and wrist pain.  Took him to the doctor and the doctor does not think it is related to the medication.  I was so excited about this med as all of the others caused loss of sleep and appetite and this one did not.  Now I don't know what to do.  I plan to keep him off for a few day and see what happens. 

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judy, Community Member
1/21/10 12:46am

Thanks for your reply, Your actually the first person I have come across that has ever said anything about experiencing joint pain while taking Vyvanse.  I'm curious to see how your son feels after going off it again, I'm still trying to figure out what is going on with me, having none of my symptoms improved, after stoping Vyvanse again. 

I am scheduled to see a Rheumatologist next week and am hoping I can get some idea from him what's going on with me, by being able to get x-ray or bone scans of my joints.  

Please if you don't mind keep me updated on your son, I really hope the Vyvanse ends up working out for him and not being the cause of the joint pain.  If you hear of any others experiencing the same thing would you mind letting me know?  

Good luck, keep me posted. 

 

Reply
Melissa david, Community Member
1/21/10 10:43am

Hi My name is Melissa and I have been on Vynase for about 6 months now and I too am noticing the brusing and increased back and joint pain.  It feels as though I have the flu with out aoo the other symptoms.  I ache all over but mostly my lower back and hips.  I willl be making an appointment this week with the doctor in hopes to find out what the cause is.I would love to hear how your test come out on your test. 

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judy, Community Member
1/21/10 2:23pm

Thanks for the reply Melissa, if you don't mind me asking when did start noticing the side-effects you were experiencing? Was it right after you stared the Vyvanse, after increasing your dose, or are you not sure?

Did you experience any joint pain, back pain or bruising before starting Vyvanse?

I had a few things go before, like a few toes being numb, feet and legs hurting a lot,  and a few other things, but nothing like what I am going through now.  I have no idea if I was experiencing a health problem before Vyvanse and then it has just progressed, or if the Vyvanse has been doing this to me all along? I guess that's why I'm curious to know how your health was prior to starting medication.

If you don't mind as well, please let me know how your Dr. appt goes, and if Dr. thinks Vyvanse has anything to do with your current symptoms, I will do the same.

Thanks Melissa!

Reply
Mom of ADD, Community Member
1/21/10 8:01pm

My son has been off the vyvanse for 2 days now.  He still complained on the 1st day, but seems to be pain free today.  I plan to keep him off the med through the weekend which will be 5 days off the medication.  I will put him back on it on Monday and keep my fingers crossed that the pain does not come back and can write it off to growing pains.  He is growing really fast and we have had those before but not this degree.  I will let you know  how it goes.  I will be curious to know how your doctors visits go and if any underlying problems are detected to make doctors think it is not the medication.  If you don't mind I would like to hear from you when you know more.

 

If anyone else has experiened back pain and or joint pain I would really like to know.

 

 

Reply
judy, Community Member
1/21/10 11:06pm

Thanks for the update!

 

So no pain on 2nd day? Intresting.

 

I have an 11yr old daughter who is not taking Vyvanse or any other ADD medication, she has been complaining a lot of her legs and arms hurting as well.  A year ago I would of thought twice about it, but  because I'm having so many health issues now I seem to be a lot more aware of every little odd thing one of my kids complain about, it's starting to drive me nuts.

 

I asked my Dr. about my daughter, and he mentioned the same thing as you, most likely due to growing pains. 

Concerning the Vyvanse, my Dr. did mention at the time, it could be a possibility that the medication could likely just add fuel to the fire, making joint pain, growing pains, whatever, feel worse, but said he couldn't imagine it being the underlying cause of all the problems. He said he has been writing prescriptions for ADD medication for years, has seen side-effects but nothing like what I experienced.

Anyway, let me know how the next five days go, and what happens when you put your son back on Vyvanse, I will do the same, although I may not know anything for a couple weeks by the time i get test results back from the rheumatologist.

Thanks for the update!

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rttmom2, Community Member
2/11/10 11:32pm

My daughter who is 12 has been on vyvanse for 2 years and she has been having severe back pain the last 3 months I ahve taken her to the doctor and she says she has never heard of that side effect but she did agree that it was definetly the muscles along the spine tightening. She gave her muscle relaxers and changed her to adderrall 10 mg  2-3 /per day but that hasnt helped.....I know it is the vyvanse because when she doesnt take it she is better she just says her baack feels sore....
i have searched the internet over and over for something to help..because she desperately needs the meds!!!  Have you found anything that helps!!

Reply
Mom of ADD, Community Member
2/14/10 8:48pm

I do think it had something to do with the Vyvanse.  I put him back on the 20 m and he has not complained.  However, he has not been back on it for a long stretch of time yet, becasue we have been out of school due to snow.  I plan to keep him on the 20 dose and see what happens.  He is really growing fast and it think the vyvanse is somehow intensifying the growing pains.  That does not explain why an adult is having these types of pain with the meds like another correspondent on this site.  I am not a doctor, and all the doctors I have talked to do not think the pain is from the medication.  But this is a really new medication, so I don't thingk they know all there is to know.  Giving my child speed and something that affects the nervous system gives me grate pause.  However, it helps him so much and he has struggled so long it is heartbreaking.  He is such a sensitive, good, bright kid and I want to help him.  So hard to know what is the right thing.  We have tried every medication all with side effects that we could not live with.  He could not eat or sleep and was tired and depressed on all the others.  This one has worked best.  I was so excited and then so disappointed when he started having the back and joint pain.  Good Luck!

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Gina Pera, Community Member
2/23/10 1:17am

One possible factor to be aware of:  The Vyvanse can make the person more aware of bodily sensations that might have gone unnoticed before taking the medication.

 

That's a hallmark of ADHD: Not noticing internal or external phenomenon.  That means that, for some people, they might not notice certain physical symptoms such as backaches, feeling of being full or hungry, etc.  

 

The stimulant medication helps the person to be more aware of what's going on in the internal and external environment. In other words, certain aches and pains might have always been there -- just not noticed.

 

That's not to say that this is always the case. Of course, the medications can cause side effects, too, especially if other underlying metabolic issues are not addressed.

 

Gina Pera, author

Is It You, Me, or Adult A.D.D.?

http://www.ADHDRollerCoaster.org

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shell, Community Member
2/22/10 7:25pm

I took vyvanse in 2008 and stopped b/c of all the side effects, mostly back pain...but side effects that ppl said I wouldnt have from vyvanse... but I knew something was not right. I've started taking vyvanse again b/c I need it for work and guess what???? My back has started hurting again...ughhhhhhhhh!!! I remember in 2008 having to get flexeril and 800 Ibuprofen b/c of the back pain.

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Adhdmom, Community Member
9/19/12 11:58pm
I have tried Straterra, Adderal, concerta, intuniv and now Vyvanse. Nothing has worked until Vyvanse which my 9 year old daughter has been on for about 3 weeks now. About 2 weeks ago, she started complaining that her body hurt like she pulled a muscle or had the flu but with no other symptoms. I thought maybe we had a virus in the house or she pulled a muscle playing a sport. As of tonight, she said it hurt so much to lift her arm, and several other places on her body. It clicked in my head that it may be the Vyvanse, so I researched and found this thread. Mothers intuition says it's the Vyvanse, and my heart is broken because she came home with her first A in math today. I don't think it is healthy to keep her on it, but I don't know what to do. Reply
Adhdmom, Community Member
9/20/12 12:06am
I have tried Straterra, Adderal, concerta, intuniv and now Vyvanse. Nothing has worked until Vyvanse which my 9 year old daughter has been on for about 3 weeks now. About 2 weeks ago, she started complaining that her body hurt like she pulled a muscle or had the flu but with no other symptoms. I thought maybe we had a virus in the house or she pulled a muscle playing a sport. As of tonight, she said it hurt so much to lift her arm, and several other places on her body. It clicked in my head that it may be the Vyvanse, so I researched and found this thread. Mothers intuition says it's the Vyvanse, and my heart is broken because she came home with her first A in math today. I don't think it is healthy to keep her on it, but I don't know what to do. Reply
Twila Rigmaiden, Community Member
9/ 8/11 12:41am

be careful just taking your child or yourself off vyvanse after taking it for a period of time i was under the impression that you kinda have to wean yourself from it. my doc just put me on it and im having side affects mostly headaches and i have to pick a day and make myself eat something cause i have no appetite whatsoever but ive never been so clearer minded in all my life i carry a small bottle of tylenol with me every where i go cause the headaches are sometimes unbearable. my girls also take vyvanse 30 mg and i dont make them take it on the weekends but that is about the limit. end of school last year i slowly started taking my daughter off of it because we had already discussed with the doctor that it wasnt for summer use but your body becomes dependant on it and if anyone is like me (lack of energy/life) without it then maybe while on it your running around like a chicken with ur head cut off using more muscles and joints then u normally would in our dead state aka no energy. my kids are forever telling me mom sit down take a break but i cant i gotta keep going ive been on it for about a week and have done more laundry and cleaning in those 5 days then i did in 6 months time frame. remember when we use muscles that arent really use to being used they can hurt like the other person said get on and stay on or get off and stay off because its not good to start and stop.. i probably didnt post this on the right post but i just grabbed one good luck and i hope things start feeling better for any of yall having problems 

Reply
mkb, Community Member
12/ 9/11 5:40am

I only take vyvanse when i work, & i have EXTREME back pain when i take it. my b/f also has the same complaint. its related

Reply
sawyermcb, Community Member
3/ 5/12 1:40pm

*Personal opinion/experience I am not a certified medical personel*
Late reply but im willing to spread my knowledge where i see an oppertunity! From personal experience as well as that of my close buddies we all will take add medicines on occasion at night and pull all nighter playing computer games. (we all have prescriptions. for the record) Although this is not how your child should or was/is being administered his ADD medication,(i hope) a subconscious side effect of taking stimulants is sitting in the same exact position without weight shift for very long periods of time. The mind will be so hyperfocused on whatever task it is following out that you 'forget' to shift your weight around to avoid discomfort which is normally a task handled by your sub conscious mind saying to itself "this is becoming painful, i should shift weight off the pressured area". The results of this effect can causes muscle stiffness, muscle soreness, joint stiffness, joint soreness, sharp pain in joints as well as about anything else you could think might spur from pressure on specific parts of the body for potentially hours straight(try sitting in one position on a computer chair and dont move at all for an hour and youll see how it can cause issues). From my experience the discomforts and all above effects went away in a week or less but I did not ever have a situation where i would sit at a location for a long time every single day as he does so the effects and recovery time may vary. Some tips to avoid these things is to stretch every muscle group briefly every hour or so to stay liber and prevent muscles from tightening up. Make sure he has eaten and has the nutrients for his body to be at the best of its natural potential. Drink plenty of water to stay hydrated and keep muscles and joints hydrated and some how make sure there is some way to remind him to shift positions every now and again (post it note on the computer desk, bracelet with a word written on it so when he sees the word he'll remember to move, etc..). Now if for whatever reason he doesnt remember to shift positions it should not matter if he remembers to stretch out and liber up about every hour. Finally while on the stimulant medication one will zone in, to a typing task for instance, and pump out sophisticated words (meaning more letters which is in turn more key strokes) at incredibly fast speeds. The sheer increase of strenuous activity on fine movement joints such as his elbow and wrist (not neccessarily defined fine movement joints, but in the instance of computer typing their range of motion is fine and precise) can cause stress and discomfort; but as i stated above your mind under the influence of the drug wont realize the discomfort until its been an extended period of time, that is, unless you are conscious of what is happening and become aware of the sensation which is why i stress he get into the habit of running a mental check of how he is physically feeling every once in a while. 

hopefully i could help in some way shape or form! Add medicine is a great drug and definitely has valid therepudic properties dont get discouraged! It took me from failing almost every single class to B's and high C's and without it i would be right where i was.

Any questions reply and ill shoot you my email -sawyer 

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Gina Pera, Community Member
2/23/10 1:11am

Judy,

 

It sounds like your physicians are unfamiliar with neurobiology, neuroendocrinology,. and the possible effect that Vyvanse might be having on you.

 

I'm not a physician, but I've heard many (many!) stories of encounters with physicians who have difficulty assessing the "big picture" -- that is, hormones, thyroid, medication side effects, etc.  It's easy to understand; this is complicated stuff!

 

The fact is, Vyvanse is an amphetamine-based medication. And while some people find it greatly enhances their lives, it only makes sense that a medication that can create great positive changes could create other side effects.

 

There are many possibilities. For example, if your physician is not addressing any co-existing "serotonin-related" issues (such as anxiety or depression), the stimulant alone could be backsuppressing serotonin; the symptoms you describe are not out of line with that phenomenon. 

 

It could also be that your body is not getting enough (or utilizing existing) amino acids -- the precursors to neurotransmitters.

 

And it's also possible that some other health issue, unrelated to the Vyvanse, has cropped up.

 

Good luck sorting it out.

 

Gina Pera, author

Is It You, Me, or Adult A.D.D.?

http://www.ADHDRollerCoaster.org

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Ouch, Community Member
3/ 4/10 8:32pm

Hi Judy and All,

 

Well, I am going off of Vyvanse again after another bout of joint pain. It's been simple for me.  On Vyvanse, my neck is stiff and knee is in pain.  My toes have been stiff as well.  Off Vyvanse, and it takes some time, I'm fine. 

 

I'm trying to see if others have experienced this.  The sad thing is, Vyvanse has been great for my brain function, but the pain is making it not worth it. Again.

 

I've seen folks here, on ADD Forums and on drug reporting sites that make me think we are not alone.

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judy, Community Member
3/ 5/10 1:12am

Thanks everyone for replying to my question.  It's good to hear other's have experienced some issues with Vyvanse as well, at this point I'm still not sure what is going on with my health, or really if Vyvanse had anything to do with it, I truly have no idea.

After going off Vyvanse again, this time for 2 months I still had no change or improvement with my health. I tried Concerta for a few weeks but found it made me very tired.  At this point I feel something is not right.  I had some different test done through my doctor in which a few came back showing some concerns. I will follow up with more test in the next few weeks. 

I still continue to wonder if the Vyvanse could of triggered something, but who knows? 

To this day I still never regret going on it.  I was diagonised with ADD at 18 and so grateful to know I wasn't just dumb. After trying so many different things over the last 16 years to improve my life, and my children's, I decided to give the medication a try.  After being on it for one month I couldn't believe the change I saw in myself, along with my husband, friends and family. Things finally made sense, I could not have been more pleased with the improvments and changes I saw within myself. For the first time I felt I was living life the way I always felt and knew I could. I most likely will never know if Vyvanse contributed to my health problems, but I will always be grateful for the way my eyes were opened, in not only helping me be a better mom to my kids but a better me.

Thanks again everyone for the information you have provided me with,  please know it's greatly appreciated!!

 

 

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kate, Community Member
7/19/12 8:44am

VYVANSE AND RHEUMATOID ARTHRITIS LINK???

i am 24 years old, am and always have been very active. Back in November I began taking Vyvanse to get me through grad school. It was easy enough to get prescribed to, without having any sort of testing done, therefore, I thought it couldn't be that bad of a drug. Boy was i wrong. I automatically began experiencing joint pain. It started in my knuckles, moved to my ankles and knees and progressively worsened to a wide spread pain throughout my entire body. In the beginning I blew off all of the symptoms, thinking they must have been related to working out and being sore. I have always had some knee problems as well, so I thought nothing of the symptoms being related to Vyvanse. Around March my symptoms had gotten so bad I would wake up in the middle of the night with shooting pain in my joints. The swelling began shortly after, along with numbness in my feet, fatigue, and flu-like symptoms. I was diagnosed with Rheumatoid Arthritis in May and the Drs have all said the R.A. is not likely linked to Vyvanse, however, I cannot help but wonder if it ignited my symptoms along with the disease. Every doctor I have seen ( quite a few in the 3 months!) said to go ahead and keep taking Vyvanse, while I was still a bit hesitant and questioned the strange link between the 2 I continued to take Vyvanse to get me through some rough grad school days.  I have never taken Vyvanse more than 3 times a week, and currently have taken only about 3-4/month. I have been keeping a notebook to track my specific diet intake, medications, exercise, sleep, etc. to manage this awful disease, and I most certainly have noticed a significant difference in my joint pain in the days immediately following a vyvanse (i am prescribed  to 40 mg, 1 a day) I have researched a great deal to find any information related to a link between the 2, and while I have come up short, there are numerous posts and discussion boards in which people are describing the EXACT same symptoms of R.A- in the same order it all began with my onset who are taking Vyvanse.

 

Rheumatoid Arthritis has changed my life completely. Within in the past 6 months I cannot even remember what it feels like to be pain free for a day, or even a few hours. No medication has worked, I have spent hundreds of dollars on Dr's visits (in the beginning no dr could identify the r.a so I made my rounds of apts for the various sysmptoms, MRI for an inflamation in my ankle, knees, etc. ) I have to wake up at least 2 hours before I want to leave the house in order to be ready and feeling at least ok enough to walk to the car and into work or school. Once I get moving, and the pain killers kick in I feel better-but never awesome. I am wondering if anyone else has been diagnosed with R.A. shortly after beginning Vyvanse. With vyvanse still being a relatively new drug, I cannot imagine there has been enough research done to disprove my theory.......I know the symptoms are out there, but are there more people who have been diagnosed???

 

I realize I have a biased opinion, however I would not suggest Vyvanse to anyone! Just knowing that people are experiencing the same side effects leads me to question the medication. I would never wish this disease upon anyone, and just would like for parents of children with ADD/ADHD to please research and listen to your child if they are going to be or already on Vyvanse. I constantly wonder if I would be living a normal life had I stopped taking the medicine back when the symptoms first began? 

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Stacey, Community Member
11/17/12 5:24pm
Kate, I would love to hear how you are doing. I'm convinced tht Vyvanse is causing my neck and lower back pain. I feel like I've pulled a muscle in my lower back and neck. I do work out but never had anything Last for 4 or more weeks without getting better. The only thing that makes me feel better is Advil. I did have trigger point massage on my neck and it got better but the pain is back. I'm so mad because I changed from 5mg of adderrall xr to Vyvanse because I thought it would be smoother and it was until I started working out again. Maybe I lost a bunch of muscle. I will say that I had lots of muscle aches before taking any stimulants at all. I had to watch how much I worked out or I'd be so sore. I was tested for RA and nothing. I know I have inflammation related soreness. When I actually started taking the stimulants all of my pains went away. They are back now nd wondering if I need to increase dosage so more dopamine will be released??? It's all so confusing. I guess I need to go back to square one, get off vyvanse 20 mg and demand someone get to bottom of my pain. I do also have low thyroid but not low enough to warrant prescription in my docs mind. I think I'd like to try it now. I also believe that vyvanse could be causing a vitamin deficiency. Wouldn't it be nice if we could figure out which vitamins contribute to muscle/nerve health and test ourselves? I have a friend who is a nutritionist and I'm going to talk with her. She dx me with iron deficiency anemia when my doc discounted the marginal numbers when I was complaining of being extremely tired? I thought it was adderrall and it wasn't but it could have contributed. On a mission.... Let me hear from you if possible. Thanks!! Reply
paris, Community Member
5/29/13 7:57pm

i recently was put on lyrica and vyvanse.shortly there after one morning i woke with near about every joint in my body stiff and sore.then..maybe even same day felt like i had flu.told my pain managment doc and she said it sounded like adverse things going on with lyrica.i have now been off lyrica for almost a week.some things are gone but still got pain in a main nerve full length of both arms and i feel like i have the flu all the time pretty much.when the joint pain(evenly sided) was going on i first thought ra then celiac,lupas,heck..even lyme...my tests(rf sed rate and ana) just come back neg..did you have these tests done?? i was even thinking i could be getting poisned befor i read this thread last night..now im thinking i may need to stop vyvanse..lol..if you can help me please do..

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Adhdmom, Community Member
9/20/12 12:02am
Try glucosamine and fish oil? Reply
Ron, Community Member
9/15/11 11:53am
Well I'm no kid, I'm a 45 y.o. Male and I've been on vyvanse for 18 months. About 6 months ago I started having pain in my joints and lower back (kidney) That have slowly increased to the point where I'm absolutely miserable! Ive just completed a ton of tests with my general MD, rheumatologist, hematologist, urologist (that was fun!) endocrinologist psychologist and nephrologist! All test came back normal! However I stopped taking the vyvanse today, and although it too early to tell I do have Noticeably less joint and kidney pain! I'll see if this keeps up, but I think we may be on to something! Reply
Ron, Community Member
9/15/11 12:00pm
Well I'm no kid, I'm a 45 y.o. Male and I've been on vyvanse for 18 months. About 6 months ago I started having pain in my joints and lower back (kidney) That have slowly increased to the point where I'm absolutely miserable! Ive just completed a ton of tests with my general MD, rheumatologist, hematologist, urologist (that was fun!) endocrinologist psychologist and nephrologist! All test came back normal! However I stopped taking the vyvanse today, and although it too early to tell I do have Noticeably less joint and kidney pain! I'll see if this keeps up, but I think we may be on to something! Reply
amanda, Community Member
8/ 2/10 4:06pm

doctors don't know ****. I just started taking my vyvanse because adderall gave me horrible side effects. I have horrible back pain now, I can't take it. my doctor said it couldn't be from vyvanse but look at all these people who have back pain now. 

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Samantha, Community Member
9/16/10 10:04am

Hi Judy, 

 

I hope you're feeling better. I was wondering if your doctors have come up with any answers for you yet as I am having very similar problems.

 

Joint pain- my knees have suddenly started to hurt and my hands are so bad I can't open jars anymore. Basically my joints feel like what I imagine the joints of an 80 year old might be experiencing! (I'm 38)

 

Flu type symptoms every few days- run down to the point of almost lethargic with that whole body ache that usually accompanies the flu.

 

Mid and lower back pain/ burning- At first I was thinking we just needed a new mattress. (I was also tested for UTI's and kidney infections and was told everything was fine.)

 

Unexplained bruising- I often find large deep purple colored bruises on different parts of my body that I have no memory of an injury to explain them. 

 

Until I read your post, I hadn't even considered the fact that the medication may be causing my problems. I have been on 50mg Vyvanse for about 8 months now. Please please let me know if your doctors find a solution. Thank you!

 

Samantha

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judy, Community Member
9/25/10 1:28am

Samantha,

 

Hi!! Thanks for writing to me. I'm so sorry to hear you having so many problems with your health. If you don't mind me asking have you seen a Doctor, aside from being tested for UTI's & Kidney infections, in having other test run to see what might be going on?

 

As far as knowing for what is wrong with me, still not sure yet.  I'm currently seeing a Neurologist in which I had a MRI of my brain that shows multiple scattered lesions on my brain. I also have had 3 different EEG's which all show seizure activity. Doctors really thought it was MS, but in 2/2010 I had a spinal tap done which came back clear.  My leg pain (numbness, weakness, burning pain & especially right side of body) along with dizzyness, is by far the worst right now, along with many other symptoms as well. I'm seeing a Rheumatologist in 2 weeks to go through more testing again, but honestly not sure what's going on considering all blood work for things like RA, Lupus, Lyme, inflammation ect.. Always come back normal. Doctors still have not completely ruled out MS, especially with the symptoms I have as well as my age (35)  But like I said because of the spinal tap being normal, they are first going to rule out possibility of the lesions being related to vascular problems before they continue moving forward with more testing for MS.

 

We also just found out my daughter has a auto-immune disease as well. (So sad) My grandpa as well as my aunt both have RA & my sister has a auto-immune disease that effects her Kidneys. So at this point I don't think Vyvanse had anything to do with my symptoms. Although I still wonder if stress along with the Vyvanse may have triggered something, but I certainly don't feel anymore that it's causing everything that's going on with me.

 

I'm sorry I wish I had more answers for you, I hope in some small way this helped in at least continuing to keep moving forward in getting to the bottom of your health issues.  But just keep in mind that YOU know your body better then anyone.  Continue keeping a open mind, trying everything that you know in caring for yourself & body and if none of that works, then keep moving forward with getting answers to your health, don't give up!!

 

I will continue to keep you posted on things I find out and please do the same for me concerning you, if that's OK?

 

Well, good luck Samantha....Keep in touch!

 

Judy

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paris, Community Member
5/29/13 8:16pm

please keep me up to date too judy..it might not only save a ton of money with tests but help me get back to the way i was a month ago..prayers for you..paris

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christadawn, Community Member
9/24/10 8:07pm

I was estatic when i read this. i have been on the meds for six months and in teh past two months i have been to the er 9 times and have been seen by multiple specialist i am now being seen in a caner center and they have diagnosed me with an autoimmune disease and are now saying lupus. i was first taken to the er when i became covered with bruises..by the end of the day i had 29. i have sever joint and muscle pain and tightness like someone is holding my ligaments tight. i cannot open jars twist toothpaste or even light a lighter in the morning. my feet become completely numb and feel like they are falling asleep. they then swell and turn purple and blue. my doctors insist its not the medicine. i was even taken off of it for 3 weeks and nothing changed in fact i felt worse bc the medicine was the only thing that kept me moving. i want to go off of it but i cant due to my constant tiredness and symptoms. the doctors have even said it could b cancer but all my blood tests are normal. i really want answers and i cant get them anywhere. is this permanent if i go off of them? i feel so helpless and so sick. this has been a nightmare for me and i hope with enough of us having these problems some one might listen or give answers. keep in touch

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judy, Community Member
9/25/10 1:57am

To the above writer,

 

I'm so sorry as well for all your going through..I totally know how your feeling. If you don't mind me asking di your symptoms get worse with time, or did you just wake up one day and they were all there?  How did you feel when you first started Vyvanse? I know I felt wonderful. Infact it's kind of funny, prior to starting the Vyvanse I had started having really achy legs ALL the time. Somedays I could hardly walk. At the time I was training for a marathon and just blew it off to putting to many miles in one day running. With time I started cutting back on the miles (over a 2 month period) only being down to running 4 miles a day, which was nothing compared to what I was used to doing. My leg pain seriously got so bad I would just have to spend half the day sitting on the couch rubbing my legs & trying to rest them so I could walk better. I was also having internal tremors when I would sit down in my right leg. This went on for about 4 months prior to the Vyvanse. The first thing I remember thinking when going on the Vyvanse was that my legs didn't hurt anymore, all while the medicine was in me and working, I was thrilled! As soon as it wore off my legs started to hurt again, but I was so thrilled that my leg pain & tremor were gone for the most part, while being treated for my ADD with the Vyvanse, I was so pleased and happy with the direction my life was taking, I couldn't have been more thrilled. Things didn't start progressing and getting worse for quit awhile after being on the Vyvanse.  And like you everytime I go off the medication (once going off it for 3 months) I felt SO much worse, I really didn't know what to think was causing my health problems, Vyvanse never even occured to me in being the problem until months later.

 

OK, so one more quick question...Sorry. But is there any one thing (or more then one) that has lead the doctors to believe it's Lupus? 

 

Pleases if you can, keep me posted on what your doctors find out. Until then, best of luck to you...I hope your able to get to the bottom of this and start moving forward with working on getting better.

 

Take care!

 

Judy

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christadawn, Community Member
9/26/10 1:51pm

when i first started taking the medicine it was life changing. it was so remarkable and helped me so much. yet now i am so sick i have constant pain constant numbnesss and fatigue. if i stop taking it i literallly cannot get out of bed or care about anything. also drs found out my immune system now is so bad my mono that i had when i was 14 has become active again. its a mess. the only reason they say lupus is bc its an autoimmune disease which means ten million symtems none making sense and constant sickness. also in the hands and feet lupus shows raynauds syndrome which is wat happens to me but something in me just KNOWS that it is this medicine. also have them check you for artery hardening. mine have started to which is causing the circulation problems the sever pain in my legs arms and feet. i want off this medicine so bad bc i know it is going to end up being pulled off the market. i have played sports my entire life never have a ever dealt with this. it was 4 mnths after starting vyvanse i noticed my hands swelling up and numbness in my feet another month and it all became much worse. wat devastates me more is that i have to remain on this medicine that i know is destroying my body bc otherwise i cant function. im talking to a lawyer monday and an MD from two states away. im not stopping till i get answers. also the only thing that made me feel a little better is 2 natures valley herbs..chinese blood builder and amino acids...def helps. keep in touch. im christa by the way

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dizzyd, Community Member
10/25/10 11:40pm

I have been on vyvanse for 18 months (49yr old female). After 6 months of therapy - (which I was very pleased with)- I woke up with bi-lateral carpal tunnel. Happened suddenly... I had swelling, tingling and numbness in both hands. Symptons continued - I saw an orthopeodic and a neurologist- both said carpal tunnel. After continued symptoms including numbing feet, painful knees and back pain and I had hand surgery (one year after onset) . All symptoms have continued. Nothing has helped. I have continued taking vyvanse through everything. I Never thought vyvanse could cause any of this. I have tried everthing except getting off vyvanse. Guess I'll give it a try- hello ADD.  

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OOPSMA, Community Member
1/17/13 10:16pm

 I too now have carpal tunnel in both hands happening overnight more or less happened the 2nd month i believe wising up quick before  who knows . MY HANDS FEET SWELL ALSO SORE JOINTS FEET HURT NUMBNESS IN TOES  PEOPLE NEED TO BE WARNED THESE THINGS ARE NOT GOING AWAY AFTER QUITING VYVANSE KNOW MATTER HOW WELL TI WORKS IT IS TOO PAINFUL I AM THIRTY FOUR AND FEEL LIKE I AM NOW FIFTY SINCE STARTING TO TAKE THIS PILL

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carrymema, Community Member
1/17/13 10:20pm

 I too now have carpal tunnel in both hands happening overnight more or less happened the 2nd month i believe wising up quick before  who knows . MY HANDS FEET SWELL ALSO SORE JOINTS FEET HURT NUMBNESS IN TOES  PEOPLE NEED TO BE WARNED THESE THINGS ARE NOT GOING AWAY AFTER QUITING VYVANSE KNOW MATTER HOW WELL TI WORKS IT IS TOO PAINFUL I AM THIRTY FOUR AND FEEL LIKE I AM NOW FIFTY SINCE STARTING TO TAKE THIS PILL

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carrymema, Community Member
1/17/13 10:20pm

 I too now have carpal tunnel in both hands happening overnight more or less happened the 2nd month i believe wising up quick before  who knows . MY HANDS FEET SWELL ALSO SORE JOINTS FEET HURT NUMBNESS IN TOES  PEOPLE NEED TO BE WARNED THESE THINGS ARE NOT GOING AWAY AFTER QUITING VYVANSE KNOW MATTER HOW WELL TI WORKS IT IS TOO PAINFUL I AM THIRTY FOUR AND FEEL LIKE I AM NOW FIFTY SINCE STARTING TO TAKE THIS PILL

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Lisa, Community Member
6/12/12 8:51am

My daughter's syptoms sound a lot like many of this website.  I have taken her to a hematologist for the deep lasting bruises she that have not gone away and appeared over 6 months ago from a sport.  The bruises and back pain are the two most prominant Vyvanse side effects I think are definitely related now that I read the other comments.  She has never had any of these symptoms until now after months of being on Vyvanse.  What does the company that makes Vyvanse say??? Has anyone reported these side effects to the FDA?  I do plan on showing my doctors this website so she is aware of what could be causing the bruises.  My doctors were not aware of any correlation with Vyvanse.  

 

 

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waterbegone, Community Member
4/25/12 9:09am

hi!

did anyone find out if the medicine was causing their problems? I have been on Dexedrine for 2 years and have all these same problems. Terrible jjoint pain, faigue, back pain and i have gained weight! i have never weighed this much- i am wondering if the dex is causing dehydration since i drink coffee and sweat everyday. i can no longer do any weights b/c of the terrible muscle pains.

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GRACE, Community Member
5/28/12 10:18am

I was very curious about your dose of Dexedrine....do you take spansules or immediate tabs?

When did you find the wight gain began....Dex usually kills your appetite!

 

I have also been on it for 2 years....was GREAT for 8 months...zero issues.

I suddenly developed Raynauds, joint pain, hair thinning....just sick....and it has continued for a year and a half.

 

Also had every test, specialist....Lupus? Lyme?

I was never ill, athletic....then literally one day it all changed.

Is it autoimmune.....or could 5 Doctors be wrong about a drug side effect??!!

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waterbegone, Community Member
5/28/12 1:33pm
Hi! I have both but have only used spanules. What do u take? Is yours for ADHD? I take it for idiopathic edema. Same thing with me- it worked 8 months and I lost weight, fluid retention and then all of sudden gained weight and started having terrible joints pain and really high pulse also have raynaurds I've never weighed this much before gained 20 lbs in 6 month! I work out everyday running 60 min and eat low carb or hardly eat on dex! Reply
GRACE, Community Member
5/28/12 10:18pm
Thanks for responding! I have not been able to find detailed experiences as You describe for Dex. Yes- I take it for adult ADD, though It was only diagnosed 2 years ago (more of a racing mind). I am curious about your use, so not for ADD but edema? This is interesting as I would think our experiences would be Quite different (as far as how it makes us feel)...that's What they say anyway. I have tried spansules/tabs...right now I am Trying just tabs & recently went from 70 mg To just 40. I felt as though the spansules maybe Stayed in my system for too long. So do you feel that this med is the source of Your symptoms...have you ever gone off completely? Did you have Raynauds prior to, or also develop It after starting. You mention the weight gain- did you change your Dose at the time? Do you still find it kills your Appetite? I have not had weight gain , but have also had to Take Tramadol for pain in my hands, wrists etc. Sorry for all the questions....I cannot believe that so Many 'specialists' would brush off a drug reaction. However, what I have now been wondering is if It 'set off ' some sort of autoimmune train that was Just waiting to happen? I have been a fitness freak for most of my life, And now can barely do 30 minutes ! Feel free to ask any questions....it is great to Communicate with someone also having mysterious Symptoms. Reply
waterbegone, Community Member
5/29/12 9:38am

hi!! wow- we have a lot of the same issues with dEX!! I have such bad pain & knots in my body- bursitis and now they say could be fibromyalia. I do have autoimmune thyroid disease. i had been on thryoid meds in the past and always would have raynaurds when my thryoid is undermedicated. i went to my knew DR. that said - you dont have a thyroid problem it's idiopathic orthostatic edema and you take adderall or dex for this. Guess i need the dopamine from the meds to keep the fluid in the intravascular spaces when i am standing. i pee at night 2-5 times and this is one the sym. so i went on the adderall low dose and changed my thyroid medicine to t4 only. first 2 months lost 4 lbs felt better but knew i could lose couple more pounds so he changed it to dex and i begged him to add Cytomel (t3 med) b/c in the past i had only used t3 and had great success with it but he doesnt like to use (doesnt think people need t3 but that's a whole different story!) finally after I got the t3 then i lost 10-18 lbs. that from sept through april 2011 but after april couple lbs came back on so he upped the med again and again and again. last summer till sept. i was on 60 mg of dex spanuale throughout the day. Also, taking my thyroid meds (t3 can act like dex they are both sympathetic agents) so i was sweaty all the time, so hot, irritable and was not sleeping as much as i used to. My weight was 124 (normal weight is 120 before i went to this dr. but when the dex really worked i was done to 113). because i was scared of heartattack and all the pain that was going on in my body i started dropping the dose and doing research on the med.

i like you have always been a runner, love to exercise- weights, pilates, running, anytype of cardio. 6 mon into Dex i developed bursitis in my hips - never had this before! then my knees! and my shoulder blades are really weak- scapula muscles and have tons of knots there that cause stiff necks & constant pain.

 

I dropped the meds to 30 mg from 60 mb NOv 30 this past year and within 2-3 months i gained weight - now i am 133-135!!!! even doing cardio 60 mins a day and having healthy (well i dont really eat besides handful of nuts until dinner time!) never weighed this much before. depressing. every time i try to wean off this meds i feel depressed b/c it gives me energy and i think (but not totally sure b/c i have only been off 1-2 days) i will gain weight.

 

Ok, so i have been to a ton of DRS and i have found 2 that say the med is causing all my issues! one DR said the meds dehydrate you and it pulls the fluid out of the synovial joints and causes pain.

my other DR said early 90s people used dex for weight loss - it worked in the beg. but after they were on it for some time they had high pulse, pains, and weight gain! that the tachycardia caused their lymph system to stop working bc it couldnt keep up wiht the high pulse. so they have edema. i feel like that is what my probelm is - i have cellulite , fluid retention dimples on the front of my legs on thighs above my knees!! WTF?!?! just feel puffy bloated all over.

my dr that gives me DEX says this supposed to cure fibro pain, edema, etc. he has research articles online but i am not sure this is what i have! i think mine could be more thyroid related.

my pulse is over 100-110 when standing but only 70 when sitting. before this med i has a really low pulse- 34 while sleeping 56 standing. i know this b/c had to wear 24 hr monitor b/c of raynaurds years ago. that was all related to hypothyroid and once i started med it went away, lost couple lbs, no brain fog, more energy.

so i am wondering if dex is causing dehydration (plus i drink coffee, wine and reverse osmosis water which i just found has all the good minerals taken out) plus i work out everyday and sweat. so dehydration causing joint pain and then it causing my aldosterone to go really high b/c this is a salt/fluid retaining hormone. it's trying to keep the fluid in my body since i am dehydrated! now this is only my guess BUT i dont know what to do!

I am scared to go off the med b/c when i lowered it 3 months ago i gained 5 lbs that really wont come off. so i keep listening and hoping that this DR is right and that i need a higher dose. he wants me to try 75 mg!! i have only been up to 60 wanted to wean into that high of a dose.

thoughts??

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GRACE, Community Member
5/29/12 10:55am

Have you ever been in contact with anyone experiencing the same symptoms?

I only ever read 'dex helped me concentrate...bla..bla'.  I am starting to think that it helps anyone with a foggy brain!  I have also struggled with low blood pressure

for years....the kind where anytime I stand up or croutch down then stand- everything goes black and I have to hold the wall for a second.

 

This idiopathic orthostatic edema....is that the same thing?  I thought I was familiar with most issues- this one I'm clueless!  Did your thyroid issues come after starting Dex?  What were the symptoms of that?  So Raynauds only when that is acting up?

 

I should mention that I am 39....part of this is I refuse to accept anything as an age issue......sounds like you and I are alike...I completely get the weight thing.

When you are pretty much always fit, 10 lbs feels like 50 lbs!

 

I tried going completely off Dex last spring/11....to see if Raynauds & pain stopped....I managed about a week.  the Dr.'s made it sound like it took a couple of days to be out of your system, but I felt like I was dying....sooo tired and wanted to eat carbs/sweets.  Pisses me off....does it just f*** up your system?

 

I also dropped weight at 75 mgs of dex...same thing, up late and running on little sleep.  If I was told I have inattentive ADD, maybe the fog and distraction was just from having low blood pressure (I am seriously not and never have been an ADHD spaz or ever had anyone suggest it).....still not sure about this.

 

Here is the part I find interesting, if you dont have ADD and I do...then at the same dose.....would'nt you be feeling like you were on speed...high...all that stuff they say?  Sounds like the side effects we had were similar.

I also had moments of worrying about a heart attack....yet by blood pressure

has been perfect, instead of low it brought it up to 120/80....then why the heart cart-wheels?

 

In spite of all this, like you- I am not loving the lower dose.  Started to feel bloated too ( i am around the same weight).  Holy shit- smooth skin started to get dimples.....I have not dealt with cellulite before!!

This must be a fluid issue as you mentioned....however sometimes not taking enough fluids causes water retention....grrrrr, what the hell?!

 

So back to reasons for taking it....you did find benefits?  the worst side effect was.....sleep?

I cant believe you had Doctors who actually pointed to Dex's concerns....I can't get anyone to say it!  In fact I think they want me on it as a benefit.

 

My GP put me on Wellbutrin while trying to wean my dose....it is a stimulant (ya right) so I started to wonder if it was the dimple monster.

But if you also experienced this- it is likely lowering the dose.  What does this mean exactly I am not sure.  Now I will try to find medical journals about this :)

 

Your suggestion about dehydration was also something I came across...I do find I dont drink as much (no desire?), does not explain raynauds etc.

But all this talk about it has me thinking that a significant increase in water is needed....it would be interesting to see what happens.

 

Do you think thyroid issues and meds are part of the weight change?  Any suggestion for what may have caused this in the first place (how long ago?)

I have never heard of Dex used off label as in your case.....sorry, did you say your joint pain started when on the higher dose only.....do you have any improvement with the lower dose?

 

I don't.....so I am now wondering if going a bit higher is still better.  Have you

tried using a combination of spansules/tabs....maybe only using tabs (no later than 5pm) would work better for you.  They clear out faster & I think better for sleep.

 

I just cannot wrap my head around a med that has been used forever....is able to cause autoimmune symptoms....(I was even treated for Lyme in December)...and the medical community 'does not know for sure'?!

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waterbegone, Community Member
5/29/12 11:17am
Hi! Ok, on treadmill trying to type will reply more later- Look up dehydration joint pain, fluid retention Also I don't use electrolytes- do u? I drink ton of water 70- 100 ounces day pee constantly but I'm washing out my electrolytes just bought mineral trace liquid at amazon - it lowers my pulse from 107 to 88 in 5 mins (while standing)!!! No I don't think dex cause thyroid that was before dex - Dex is vasoconstrictor - google that with cellulite , fluid in thighs - blood vessels narrow so doesn't send blood tihighs so cellulite lack of oxygen Also vasoconstriction cause raynaurds!! My bp always low like 90/55-60 and super low pulse until dex Now bp same as yours like 110/80 but high pulse Yes I do feel speedy on it- actually taking adderall span this month and speedy feeling worse Dex span better not as speedy but I do feel alive and awake but sometimes irritable, stressed, sweaty, hot get your free t3 and free t4 tested see if they are top 70 Percent range I've read a ton of add related to hypothyroid also ur low bp a sign, cold hands feet brain fog What's ur pulse? Go to ADHD forum look up joint pain! Reply
waterbegone, Community Member
5/29/12 11:23am
Also, look up low magnesium potassium joint pain Dex pulls mag out of body cause pain I am 40 and won't take age either Never had pain ever now constant my friends don't understand and have closet full clothes don't fit Like u I get depressed , hungry when I wean off but I kinda feel like I had less Pain at 15-30 mg But dr says all pain will be gone when at correct dose Also think dex lowers tsh level so dr can't ready thyroid labs bc I look hyper but my free tlevels are lowish Reply
waterbegone, Community Member
5/29/12 2:55pm
Are you really hot on it? Reply
GRACE, Community Member
5/29/12 11:07am

forgot to mention....I also had elevated CRP...do you remember what yours was?

Last spring an Internist decided I had Rheumatoid arthritis....perscribed Methotrexate (hard core) and Plaquenil....I knew this was not right....my brother who is an emerge Doc had me see one of his collegues (Rheumy) who said 'no'.

 

He suggested early autoimmune..Lupus?  Take a wait and see approach....who the hell wants to wait and see?

 

This is why I wonder....if we both show some signs of changes with things such as

Raynauds, thyroid, joint pain.....is it just a coincidence that we are also taking Dex- and we are attributing it to be the cause.....when in fact we are showing early signs of something brewing...not to be the grim-reaper....just playing

Devils advocate......:)

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GRACE, Community Member
5/29/12 11:09am

forgot to mention....I also had elevated CRP...do you remember what yours was?

Last spring an Internist decided I had Rheumatoid arthritis....perscribed Methotrexate (hard core) and Plaquenil....I knew this was not right....my brother who is an emerge Doc had me see one of his collegues (Rheumy) who said 'no'.

 

He suggested early autoimmune..Lupus?  Take a wait and see approach....who the hell wants to wait and see?

 

This is why I wonder....if we both show some signs of changes with things such as

Raynauds, thyroid, joint pain.....is it just a coincidence that we are also taking Dex- and we are attributing it to be the cause.....when in fact we are showing early signs of something brewing...not to be the grim-reaper....just playing

Devils advocate......:)

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waterbegone, Community Member
5/29/12 11:52am
During normal movement of a joint, a minimal amount of cartilage cells are destroyed from friction, but are replaced without issue. When the body is dehydrated, cartilage loses the ability to glide smoothly and the additional friction causes an increased number of cartilage cells to be destroyed.  Cartilage cells typically receive water and nutrients from the blood that flows through the end of the underlying bone. However, damage to the cartilage must rely on an increased flow of blood to the joint capsule that causes inflammation and pain. Lack of water not only increases the damage to cartilage, but prevents the healing. My crp was 5 Whats yours? Could be what u said- I think mine is under treated thyroid or thyroid resistance Reply
waterbegone, Community Member
5/29/12 3:05pm
Think this could be happening to me- do u eat on dex? Yes, this is definitely not surprising.  Here what's probably going on.  When your glucose levels are low, you become hungry.  One way to increase the glucose levels is to eat food.  Adderall increases your glucose levels artificially by stimulating the production of epinephrine (adrenaline) in your which then mobilizes your stored glucose.  In the short term, you lose weight.  Nevertheless, you have just artificially increased your glucose levels, so your body only thinks it is full.  Overtime a couple of things begin to happen. 1) Your cells adapt to the effects of the stimulate, hence, your body does not mobilize as much glucose.  2) Also, your body begins to depend on the Adderall to keep the glucose levels stable.  In other words, overtime when you take Adderall, your glucose levels are now what was normal a while back when you first start.  Additionally, your glucose levels drop below normal when you are not taking the Adderall.  Therefore, unless you continue to increase the does (which at a point becomes dangerous), you actually begin to become hungrier when it wears off then you were before you started.   Another problem that does not help, is the fact that Adderall suppresses your appetite which in turn causes you not to eat.  The stimulate effect itself does very little to boost your actual metabolism.  In fact, when you cut back on your calories, your body has a tendency to burn off muscle.  Muscle is very active tissue and the more muscle you have, the faster your metabolism, so in essence, Adderall in this way can actually slow your metabolism.  Therefore, unless you are doing resistance training to offset any muscle loss due to a calorie deficit, you will find that overtime, you will need to consume less and less calories to maintain your ideal weight.    In fact, over a 5-10 year period, Adderall and other amphetamines are not very effective at weight loss. This is why doctors are hesitant to use them.  Also, they have a higher potential for abuse than other drugs, however, when use correctly, they can be very effective in aiding in concentration.   One thing you may want to consider is trying a version of the drug that is time released like Adderall XR.  While this may not solve your problems, it may help manage your problems a little easier, since a time released version gradually wears off, thus making it less likely that you will have a glucose crash after the drug wears off. Reply
waterbegone, Community Member
5/28/12 1:36pm
Also have weird blood work now too ever since the meds! High crp and high aldosterone Reply
paris, Community Member
5/29/13 8:37pm

hi christa...did they ever find out what is going on with you? im haveing similar things going on with me for past month..paris

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sandyfitz, Community Member
11/17/10 11:02am

I was diagnosed with adhd in July 10. Through 5 months of trying several types, I am now taking Vyvanse. About a month ago, I started getting extreme muscle and joint pain in different areas every day. My left toe started going numb. Now both big toes and the toe next too are also numb. One day my hands will hurt soooo bad that I cannot drive home using my right hand. For 4 days, just my thumbs hurt to move. A while ago every joint in my body hurt. Yesterday just my elbows hurt. What the hell!!!!. I am in my 50's, and yes some of my body parts dont work as well as they used to. I have arthritus in some areas, but this is the strangest of aches I have ever had and they did not start until I started taking meds for adhd.

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paris, Community Member
5/29/13 9:00pm

hi sandy..i have to know..did you stop takeing the meds? did things get better? i have had all of your symptoms along with a few more like nerve pain and headaches(bad ones)..im close to fifty..i know this is NOT my normal pain stuff.which i have alot of...im really worried...so..did you stop?

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Emily, Community Member
11/30/10 2:19pm

Im So Frustrated Seeing This Because i know it must be the medicine, But Happy Knowing Im Not Alone! Im 18 Years Old And Have Been Taking ADHD medications since middle school, Finally about 1year ago they put me on vyvanse, at first it was great for me to, i didnt feel myself coming down at the end of the day, i did everything i needed to do, i still had an appetite . But lately i've been noticing the depression when i come down from it and i feel like i have tunnel vision, my pinky toes often feel numb, at first when it was summer i just thought they were cold in flip-flops because i often get cold hands and feet, but it still happens with socks or a blanket. Also i never sleep soundly, ill toss and turn all night , and wake up in the morning with such bad back pains and headaches. Which i know can't be my bed because my friends always talk about how i have the best bed. But as soon as i take the vyvanse for the day the pains go away faster and better then with tylonal! but then it starts all over after a few hours! i just dont know what to do because its hard to do what needs to be done without it!

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JD, Community Member
2/22/11 10:05am

Vyvanse is nasty stuff...get off of it...both my son and I were on it...he switched to focalin...I was taken off of it after 2 years because of increasing irratibility, high blood pressure, and pain in my joints...:(

 

My son has switched to focalin.  What most people don't realize about Vyvanse is that it is a behavior modification drug plus add/adhd drug. 

 

Also, upping the doses are not the answer...finding a great balance that tweeks your adhd is.  Most Doctors make the mistake of increasing the dose if it does not seem to be working rather than changing the medication. (because of pharm. co. offers).  Go see a specialist in ADD/ADHD, one that is a clinical psychologist.

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dvyvanse2011, Community Member
5/10/11 5:55am

Wow. I went off my Vyvanse two weeks ago, and am i finding myself with all these mysterious symptons. At first, I got a terrible migraine whil I was driving and forgot where to put my hands on the steering wheel. Then I got symptons of a sinus infection, and since then my legs are aching real bad and all of a sudden have bruises all over them. Also, I cannot control my urges to eat, it's as if my stomach is a bottmless pit.

 

Vyvanse has helped me with my daily life, but the symptons after stopping it are horrific. I feel like a junky.

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Sherry, Community Member
11/25/11 8:06am
It's amazing reading these posts. I too have just come down with carpal tunnel syndrome. I have been on vyvanse for a year now. The tingling in my middle finger has started to wake me up in the middle of the night. Now it's getting the point where it feels like it's going to explode. Or burns. And it has also traveled to my ring finger as well. Mixing food when I cook, I also get a twinge that radiates all over my wrist. I believe that drugs, any western drug will deplete your body from extra vitamins and minerals. vitamin B complex is known to help with nerve pain. I don't think it's the drug persay that's causing this, it's that now you need extra vitamins and minerals to compensate whatever is being depleted. A GREAT website I have learned a lot from is earthclinic.com It's full of natropathic information for any and all ailments. Hope this helps. Reply
ProjectMayhem, Community Member
12/ 2/11 10:46pm

I have been on vyvanse for 6 months now, after being on adderall for year. Off and on I've started getting numbness and loss of circulation in my pinky toes and recently I've noticed my pinky fingers becoming numb and lose circulation. It now seems to have moved to my ring fingers.

 

I did a little research and vyvanse is a vasoconstrictor (pretty much a stimulant which narrows the arteries). I think when it is "cold" around me, even though I may not necessarily feel cold, the numbness and loss of circulation occurs.  I found something called "raynaud's phenomenon" which matches with my symptoms.  And one of the causes is vasoconstrictors. I take 80 mg of vyvanse and also have 1-2 cups of coffee per day. It makes sense.

 

I'm still going to see a doctor if it continues. I'd like to stop Vyvanse. Athough for many of you who have been on stimulants for long periods of time like vyvanse or adderall may have also experienced, it's incredibly difficult function without them. I could probably sleep for all day when I don't take anything. I know the neurotransmitters are suppose to go back to normal, but I was once was off of medication for 4 months made no progress or improvement in returning back to how I once was, able to operate with a normal sleep schedule :/.

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weedle, Community Member
1/12/12 3:15pm

I found this looking for answers to if others had side affects such as half face numbing and one arm numbing.  I had went from 50 to 70 mg.  Never had it before but was off for 9 months due to prego.

I also had issues recently found out I have raynaulds which can intensify when on vyvanse according to the specialist.  However my shrink is who sent me to specialist and come to find out they are unaware of this issue.  its when fingers and toes get extremely cold and turn blue or purple and can sometimes hurt.

seems they dont know all side affects yet.  And just curious when you went down in dose did numbness go away?

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Kay, Community Member
1/17/12 5:59am
I take Vyvanse 60mg for ADD. I get let cramps if I sit with my legs crossed for a while or have them proped up. My stomach is always making gurgling noises and I feel weak and dizzy at times. What I think it is is that sinse I'm on such a high dose, I have little to no appetite. I have to literally remind myself to eat and force myself to eat as much as I can. Well sinse you're eating less your body gets a nutritional lack. Calcium is needed for bones, so I started eating cereal every morning because of milk, that really helped. The dizziness and weakness is also from the lack of food. I think that's also why my stomach makes noises, because the acids have nothing to break down. I'm only 18 so I shouldn't be having joint and muscle pains. Pretty much I've learne that when I eat, I mean actually eat more than just a few bites of food all day ( which is what I use to do when I first started) I feel so much better. But I'm going to get a lower dosage. I hope this helped. Reply
Kerry Z, Community Member
1/26/12 11:15am

My daughter has been on vyvanse for a few months.  She was up to 70 mg.  The other night she was crying from the pain in her muscles and sensitivity of her skin.  She is off the medication for a few days now and her legs kept her up all night last night. She is not a young child, she is 19 years old.  She has always been a tomboy and extremely athletic.  To see her go from a vibrant active young girl to someone that can't be touched without hurting is scary.

 

Her family doctor told her to go to the doctor that prescribed it.  She went to him today and he changed her medication to Adderall but is running no test on her.  I told her to go back to the family doctor and make them run tests and stop pushing it off. 

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Cece, Community Member
2/17/12 8:36pm

She's on too high of a dose probably. I would ask to back it down to like 50. I noticed @ 70 mg, jaw pain from clenching my teeth, back pain, and at night I would crash so hard that I could not function when the medicine wore off. I told my dr and she backed it down to 50, and that was perfect for me. 

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farfly, Community Member
2/ 2/12 4:52pm

Judy,

 

You are the first to expierience the same joint  pain as I, mine is in my index finger and pointer finger on both my right and left hand, I started taking vivance in December of 2011 @ 50mg a day, after being on the drug for 3 weeks I started noticing that my finger joints were stiff and my fingers were locking in the morning I am 34 years old with 4 daughters and have suffered only from CTS becuase of Edema in 2 of my pregnancys, other than that no joint problems or Carpul Tunnel Syndrome sympotms or CTS, the sympotyms turned into such bad inflamation of my tendons that I was diagnoised with something they call Trigger finger, in both my hands, as well as CTS, the Hand specialist sent me to a Nueoroligist for testing "emg" i have sever nerve damage in my right hand and mild in my left, for the trigger finger they gave me cortison shots 2 in the left hand at the fingers in question that were poping and locking  and 1 shot 1 week later in my right hand. I was still in such sever pain that I called and begged them the doctor at that point gave me a prednisone dose pack which seems to have eleviated the inflamation and giving me some relife for now. I had originally asked if the Lysine in that is what is in Vivance could cause this and the doctor said no. my brother has done some research and he seems to think that lysine even though a minute amount can cause the inflamation . he has his theroy and it has something to do with amino acids and calcium build up in the joints themselves. I am interested as to what you think about this

 

please reply

 thanks

 

Trigger Finger in Texas

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Cece, Community Member
2/17/12 8:33pm

I've been on Vyvanse for 3 years now. I have noticed some back pain recently but not very often. I have noticed blurred vision comes and goes, but it's very rare, I had my vision checked and it hasn't changed according to my optometrist in 5 yrs. I don't think this medication will cause carpal tunnel, it may enhance your awareness or maybe it's just getting worse. I was confirmed as having carpal tunnel syndrome at 23 yrs old (I suspected it since I was in my teens but dismissed it b/c of my age) and on this medication I have not had any worsening of the symptoms and I am now 30. I have times when the symptoms are really bad for several days straight and more often than not I have nothing, it was the same prior to my starting this medication. 

 

I did however notice that when my dose was too high, 70mg, that I started having jaw pain and constant back pain but this is b/c it's a stimulant - so I would clench my teeth. For example when your body is too cold it shakes trying to warm up which causes back pain, stimulants do this as well on a much smaller scale b/c you have too much energy and it's not going anywhere so this causes some of the muscle aches and it does make you tachycardic (heart racing=elevated blood pressure). I confirmed this by working out and checking my blood pressure on and off the medication. By backing down the dose my symptoms went away although it still elevates my bp.

 

Also I would only take it on days that I needed it, i.e. going to work, if it was a weekend and I had nothing planned I didn't take the med although drs don't recommend this but since this isn't a contagious illness or something that I would die w/o then my decision was to limit how much I take. I've heard many people on other blogs do the same thing for pretty much the same reason and they also seem to have lasted a long time on this w/o too many problems. But I am just stating how I have chosen to take this, not that I suggest anyone go against dr's orders. Mostly I enjoy being on this medication (@50 mg), I am not addicted, but I can tell the difference when I'm on it and when I'm not.  Hopefully this helped in some way. :) Good luck with your treatment options. 

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Jane, Community Member
2/26/12 9:48am

Hi Judy,

I have never answered on any of these sites but came across your post in looking on the internet for vyvance.  I see your post is old but will answer anyhow.  1st let me tell you to  not let the doctors make  you feel crazy.. I started having problems when I was in my twentys with suddenly breaking out with hive like things all over my body. I could sometimes barely get up and walk in the morning because my hips hurt so bad I wanted to cry..I am a person who is never sick nor do I have time for it..very active out going out to conquer the world girl.. The doctors started doing test for Lupus and each time my Ana was normal as well as the other blood work..THey gave me they then said it is Fibromyalgia..which I am personal think is a crock answer to say we don't know.. it's in your head.. Well..did have another doctor (plastic surgeon) that looked me in the face and firmly said.. Don't you listen to that..that is a we don't know answer.. about 10 years past and finally one day I had  another break out and hives from head to toe and felt like I had the flew.  I had been haveing small ones for about 3 months and just felt sick sick sick... This time they did punch out biopsy that came back consistant with Lupus.. Soooo my point is.. don't rule that out..it can not be determined in one blood test..there is no such test..it is very complex and hard to pin point.  IF YOUR DO have this..don't freak out.. it is not like it was 10 or 20 years ago.. 1st.. don't allow them to put you on tons of meds.. prednisone will kill you faster that lupus itself..I only have taking the steroid when I have to to get under control after a bad flare up.. 2nd Doctors will say there is no lupus diet.. BS .. ...Doctors treat you once your sick..not prevent us from getting sick.. glad we have them...but THAT MD behind there name does not always mean they know the best... I started learning from OTHERS WHO have lupus what diet can do.. don't try to follow everything it says to not eat or you will starve to death..however trying taking things out of your diet and then putting back in one at a time to see how you feel.. I no longer eat night shade veggies or at least on a regular basis.. and no tamatoes.. my favorite food ever :(.. Now about the vyvance..I was on adderall and it worked great for me but I have had financial trouble lately and needed to do something..Vyvance had a program to help and am getting it free for one year now.. HOWEVER..the first month I took it..I started having leg pain, joint  pain all over..makes my heart race way more than adderall..makes me have anxiety and feel depressed.. I started ready on how vyvance works.. Well..it works from in your gut and with amino acid.. BIGNO.. this I think is the problem.. Lupus can be aggravated by amio acid and I believe this is the problem..I stopped taking vyvance this week and guess what..I stopped hurting and feeling sick.. soooo my point is ..you are not crazy.  Vyvance may not have caused the problem in itself..but triggering something underlying..and if you do have Lupus or something auto immune..don't freak out..not the end of the world.. God gave us natural things on this earth so use them and stay away from the drugs as much as possible..yes there are times we need it..but we can prevent it.. I had that gut feeling for years I did have the lupus once I learned of it..and found out in Dec or 09.  By connecting the dots ..I think I was born with it..I am now 43 have lupus but I DO NOT TAKE meds ..I treat it naturally..and I am doing great..The only time I need meds seems to be when I start eating fast food a lot or even the healthy things but the ones I can have like night shade veggies.. sorry such a long post but....I hate to see so many people out there that let this destory there life..

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Cathy, Community Member
4/24/12 12:30am
I have taken Vyvanse for almost 3 years now. Muscle pain in my legs and back have been so bad I can't get out of bed until after I've taken my 70mg dosage in the morning and about 45 minutes later I feel like getting up. My Dr. has done so many tests for everything that finally he diagnosed me with Fibermyalsia . Great , another medicine. I have quit cold turkey, it has been only 6 days now. I was doing good and not experiencing mood swings but today I had a really bad day. I hope this doesn't last long. I just wanted to say I really feel this medicine is the cause of a lot of my other medical conditions that have been chalked up to " oh you're just getting older and that's what happens" I'm 42 and feel like I'm 82 most days. Reply
fraim1, Community Member
4/10/12 6:52pm

Interesting thread. I have just gone off Vyvanse for a couple of days (actually I just wanted to see how I felt) and was looking for folks experiences regarding side effects from going off or taking Vyvanse intermittently. Quite surprising to see this thread because I have virtually all the symptoms described on this thread. Back ache (thought it might be gall or kidney stones), numbness in hands and feet (thought it might be CPS although the feet component didn't add up) , cramping, and periodic dizziness, and eyesight issues. I fairness I have ben daignosed with Lymes but none of these issues till I went on Vyvanse. The vasoconstrictor discussion makes a lot of sense...will look further....

 

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Maxine, Community Member
4/30/12 12:42am

I have been having similar numbness in my hands and feet for the last 5 months after being on Vyvanse for about a year. I did all the blood and nerve tests without negative results as well.

I do notice slight improvement if I don't take Vyvanse for a couple of days. I've been on Prozac for over 10 years without side effects and I have recently stopped taking Vyvanse. Since I've been dealing with this pain and numbness for almost 5 months, I'm willing to give it at least that much time without Vyvanse to see if things improve.

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Tess, Community Member
1/18/13 11:32am

Please let me know if your symptoms left after stopping Vyvanse.  I am 45, and physically felt VERY healthy when I began taking Vyvanse.  Within 3-4 months, I began noticing that my right leg felt like it was falling asleep everytime I sat down.  Just at the dinner table or computer.  It then got worse, and my right arm began going numb.  The pain is moderate, but I have a very high pain tolerance.  When I asked the doctor about Vyvanse being the cause, she absolutely dismissed it.  Now my right hand will turn ice cold, and my left is warm.  My husband was so worried about me having a stroke that I have decided to stop.  It is only the second day, and I feel no improvement, and read a post that said once you take it the symptoms will never leave.  Has anyone stopped and had their symptoms disappear.  I got blood work, test, etc and they were all fine.  I tested positive for the antibodies for Lupus, but it isn't active they said at the moment.  I am afraid taking the vyvanse any longer (its been a total of 8 months) that I will bring on something I will not be able to stop. 

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Kslide11, Community Member
5/ 3/12 2:29am
I have had a lot of the same problems and have been on vyvanse since re end of 2007. It turned out that I had celiacs disease and once I stopped eating gluten all the symptoms stopped. The only time they come back is when I accidentally eat something I'm not supposed to. Maybe this might help. Reply
lori, Community Member
5/ 7/12 12:49pm

I took Vyvanse starting a month ago. I took it for about 2 weeks and starting getting very tired in the afternoon. I was also having neck, back and joint aches. I stopped taking it and had several days of extreme fatigue. Slept a lot. Had no energy. Took me about a week to recover, but I am feeling much better. Knees and back are not hurting me and I have my engergy back.

 

I just recently had a blood test done that came back with elevated liver enzymes and I wonder if the vyvanse could have had something to do with it. Had the test last week. never had this elevated level before. Will be running more tests to find out what is going on.

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BAMA, Community Member
5/10/12 1:21am

Your story is identicle to mine, pain wise, symptom wise, everything. I also tried to stop taking it as well, im on 60mg and have been on it for about two years, when i took myself off of it i had the same reaction and it feels like you are completly lost and you feel like you are crazy because noone understands. They tested me for Lupus, MS, Chrons.. i mean everything. did xray, ultra sound, ct scan, mri, nuclear medicine, upper and lower gi, spinal tap, and emg with conductor. They found out i had small fiber neuropathy disease (which is nerve and muscle damage to the entire body, it acts much like Lupus) after the Emg, but like you everything else came back negative and it just made no sense. I'm continuing to have severe problems, sometimes its hard to walk, i mean the pain in my knee, feet, jaw, and the headaches.. it's a nightmare. i wish i had answers but im still trying to find them out myself. All i can say is, before i began taking Vyvanse i did not have one health problem and now ive been diagnosed with Small Fiber Neuropathy Disease (which the Doctors implied that, that is only a secondary disease not the primary one i have that is undetected), b-12 and d deficency, anxiety disorder, and now i have a goiter in my neck with nodules. I try to stay positive and work hard, it just sucks when you are 24 years old and for the past 3 years miss out on enjoying free time because you have no energy, or is sick, or has some form of test to do at the doctors. I wish for the best with you and hope that you do not receive any harmful effects.        -Bama

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Chelsa Truppi, Community Member
6/12/12 10:29am

I am going through the same exactly symtoms! I have total left or right numbness depending on the day, splitting migraines, and I have just stoped taking the medicine. This is the workst withdraw ever. Any advice?

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Adhdmom, Community Member
9/20/12 12:04am
Glucosamine and fish oil? Reply
Rob, Community Member
10/ 5/12 6:18pm

I see similar symptoms that you are having with one of my friends. He is on vyvanse 50mg. He gives blood on a regular basis. Now that he is on Vyvanse he got a huge bruise on his arm where he gave blood. He is very skinny and light weight, and he cannot eat while taking it. I took it twice just to see what it was exactly. I noticed I was very edgy, getting scared from just someone saying my name. My heart would be racing at random times during the day, and it would be a little harder for me to breathe. I also started seeing things a few times. I would be driving and then see lights of a car as I'm backing up into a street, so I wait, but nothing is there. I look back and the lights are one. I think Vyvanse messes up people much more than doctors think. I took it only two days, and felt terrible the third day when I didn't take it. It is highly addictive it seems to temporarilly get rid of the side effects that it itself is causing for you. I would highly reccomend taking something else much safer.

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Rob, Community Member
10/ 5/12 6:18pm

I see similar symptoms that you are having with one of my friends. He is on vyvanse 50mg. He gives blood on a regular basis. Now that he is on Vyvanse he got a huge bruise on his arm where he gave blood. He is very skinny and light weight, and he cannot eat while taking it. I took it twice just to see what it was exactly. I noticed I was very edgy, getting scared from just someone saying my name. My heart would be racing at random times during the day, and it would be a little harder for me to breathe. I also started seeing things a few times. I would be driving and then see lights of a car as I'm backing up into a street, so I wait, but nothing is there. I look back and the lights are one. I think Vyvanse messes up people much more than doctors think. I took it only two days, and felt terrible the third day when I didn't take it. It is highly addictive it seems to temporarilly get rid of the side effects that it itself is causing for you. I would highly reccomend taking something else much safer.

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Amanda, Community Member
10/13/12 7:07pm

judy... I suffered so long with the same issues after starting vyvanse... I too felt fine for a long time after starting it aside from issues like dry throat and trouble swallowintg... months into treatment I began having all your issues PLUS eventually my legs began turning blue anytime I would sit longer than one or two minutes... I had constant numbness and confusion spells... I quit taking vyvanse and msot all of my symptoms finally went away.. I too went to nuerologist rhuematiologist .. and every other ologist.. I had every single one of the tests you mwntioned having PLUS more like a lumbar puncture as well.... everything came back normal even though docs could actually physically see some of my symptoms with their own eyes... eventually I quit the vyvanse ... all my symptoms went aweay except I to this day have the skippiong heartbeat and sweating and tiredness and stuff as if vyvanse permanately caused some da,age to me... quit it  now is my advice... .. i wish to god they would do morte testing on vyvanse... because as much as it helped my adhd and made me feel so much better in the beginning... it has led to nothing but horrible health issues. best of luck and lemme know how things go. 

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Andrew Goeke, Community Member
10/24/12 4:49pm

Evr sinse i b takin vivance i b hurtin al ovr 2. ow! i think bowt postin but need usur name/paswoord 2 rply. wsh everone c my blog cuz andruw b famous then. swete!! andruW haf nise car, beeg howse, n HoT cheecks vith nise buts. n beeg buubs 2...  so kewl.

-Andrew Goeke

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Debs, Community Member
12/ 7/12 4:27pm
Judy, I just discovered your post. I'm not a doctor,but we have a lot in common. I take vyvance daily, 100mg a day. You and I have the same complaints from top to bottom. Like everyone we are different in some aspects. I was diagnosed at age 5 with ADHD in the early 80's. I was ADHD when females we not commonly diagnosed as that, it was generally a diagnoses for boys. Now it's 2012, I am 35 years old and time has defiantly past quickly. You asked if vyvance could be causing your problems? Being that we have the same issues down to the thumb pain as a beginning syptom, I think you should stay with the rheumatologist path. Your blood work may be normal this year but it may not be next year. I had extreme fatigue,rapid weight gain and my adderal stopped working. I stopped taking adderal after I got to 180 mg a day. I was in a daze everyday. My ADHD was out of this world. My thumb hurt on top if it all. After a year of being tired and the cold weather was killing me I decided to go to a regular doctor. All blood tests were normal except my cbc said I had a white count that was extremely high. A few months later more symptoms came,the inflammation set in. I have bloodwork that reflects rheumatiod arthritis now . I started vyvance with my ADHD doc. I was told I had a foggy mental state due to the onset of the disease like a lupus fog. If I was you, I'd find a younger rheumatogist. They have different ideas about how these things work. The younger doctors have a new approach rather than the wait and see approach of the older doctors. I hope you found help. I really hope you feel better. We are at the age where things break for no reason at all. You should not have to live life feeling bad when a answer can be closer than you think. Thank you Deborah Reply
Vyvance help, Community Member
12/12/12 10:05am
I will tell you your exact problem and why you are experiencing this all. I've been taking this medication for 4 or 5 years, I've gone through it all and I can help you. Vyvance/adheral can be a body destroying medication, how? Sleep deprivation and dehydration, how can this be stopped and how does it set in? The sleep deprivation is simple, it is caused by vivance through thoughts, thinking for an hour or two while you lay in bed. This is the main cause, before you go to bed or WHEN EVER YOU ARE DONE using this medication YOU NEED to eat an acidic food such as a lemon or orange. Days off work are also proper times to get off this medication. If you experience some type of withdraw ( which I don't.) then you can drink an energy drink such as a monster or red bull. Okay back to SLEEP, when you miss your 8 hours of bed time, the next day or few days you consume you will experience fatigue from simple tasks such as walking up stairs. The acicid food will help break down the medications affects in turn allowing you to keep yourself healthy. DEHYDRATION. While on vyvance you don't feel the need to drink water, but other things you will down with ease. You can simply rehydrate yourself by drinking kool aid, sprite, mio the water enchancer or anything that contains good amounts of water. For some reason we are just more willing to drink liquids that have some type of taste. NUMBNESS. This is caused by you, I ONLY experience this when I do not eat and then consume. You must eat before taking to rid the numbing. LACK OF ENERGY (motivation) This is caused by you diet, if you eat junk food and ice creame you will lack motivation and energy, on and off vyvance. If you begin to eat healthy you will quickly see an improvement in productivity. Food actually has the ability to affect your mood. Your body is like a car, put bad things in you get bad results. Put good things in you get improved and better results. Reply
SummerDW, Community Member
12/14/12 12:53pm

Ive been on Vyvanse since practically its first day. I've never heard back pain described as a side effect but i think i can offer some insight. Inherently, vyvanse makes someone slow down, sit down, and concentrate (if its working for them). In the first four hours after I take my dose, it's not uncommon for me to sit and work on something and look up....and not realize how long ive been there, practically unmoving. As we all know, sitting for long periods of time is not something that the body responds well too...and is consequently hard on the lower back. I would try giving yourself or your child reminders to get up and stretch when theyre sitting for more than 15 minutes. that should aleviate a lot of the systemic muscular and joint pain thats misattributed to vyvanse, and is really just an unfortunate consequence of it working like it should. 

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Betrhealth, Community Member
1/ 3/13 10:07am

Judy,

 

I began having many of the same symptoms you described, over the same time period, and roughly in the same dosage.  I developed a serious numbing in my hands roughly 18-20 mos in, where the symptoms would come on, last roughly 15-20 mins, then subside.  The achiness I reported to the Psych, who also stated it is not "reported" in the side effects by the manufacturer.  Back pain, aching joints, all VERY similar to yours.  I graduated off the meds myself.  Stayed off for 2 mos, felt progressively worse, then saw the Psych because of the symptom profile.   He was "certain" it was not the Vyvanse.  I went back on for a while because I ached so much, then began supplements that were natural, had a winter break to sleep and rest my body, in spite of getting 8-9 hrs consistently prior.  I finally made it over the hump, but it was rough going for a while, the fatigue was awful.  For me, I can say, it was definitely the Vyvanse.  I don't care what the Doc says, OR the Manufacturer.  I KNOW my OWN body.  I stayed off Vyvanse since (though the ADD / memory issue is still problematic), but my neuropathy, aches, joint pain, and physical weakness is now gone.

Best of luck to you.

PS- I've used some natural supplements by a company called Metagenics- they help OK, not great but much better than this dangerous chemical.  Exilirin, Lumina, and Adrocet are their product names.  They helped me get over the hump and get rid of the fatigue enough so I could start getting cardio (running) and strength training going again.  It's been a process.

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Toxikraft25, Community Member
1/29/13 9:58pm

I do realize this is an old post but you never know who is looking for someone with similar side effects. Anyways, I am a 25 year old male in pretty good shape. I don't drink, smoke, or over or under excercise. I just started taking Vyvanse 30mg yesterday and it is helping me with my energy, mood, and focus, but for some reason I am have soreness in my back and arms. My back feels sore but my arms just feel heavy. My arms don't hurt but the strange feeling in them is causing me some suspicion. I really hope this is something that will go away because I've been seeking a medication that fits me since 2008 and so far this is the only thing that has helped. I might just ignore these side effects unless someone can tell me otherwise!

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C10, Community Member
2/ 2/13 5:05pm

I've been taking 40mg of Vyvanse for about 6 months.  I have had the flu in early December and now have whooping cough.  I'm sure my diet or lack of eating is affecting my immune system.  As for the back pain, I have it on and off but it's hard to say why for me because I take Mixed Martial Arts and I'm always sore somewhere and always have bruises.  I do seem to bruise very easily and I've noted that when I'm hyper focused or wake up in the morning I am tensed up and have to remember not to tighten my muscles.  I started taking xanax at night to help relax and now my sleep is much, much better.  I don't recommend this for children but I have anxiety issues so I need help with sleep anyway.  Overall, I had gained 80lbs from inactivity and lack of focus.  I've lost 47lbs and become very active and productive because of this medication.  I will take the side effects as long as I don't keep getting sick.  I have started taking Fish oil and basic vitamins to help with my immune system.  I will repost in a few weeks to see if it helps!

 

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manderpander03, Community Member
5/24/13 10:51pm

my knees have been hurting me lately i am also on vyvance but a much higher dose than you are prescribed i have also had irregular bruising from my knee around my calf   how odd.   i have tried other medications but vyvance works best for me despite the pains in the knees    they almost feel like when you over correct your legs like from the back into the knee cap is that how yours have felt?

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Val, Community Member
6/ 3/13 10:59am
Judy, my daughter took Vyvanse for around 18 months as well, within 9 months, my daughter started having the following symptoms atleast 3 times a week, some everyday: severe headache, severe stomach pain, joint pain in her arms and legs. Within 15 months of taking the Vyvanse she started to experience the following symptoms on top of what she was already experiencing: low grade fever of 99.0-99.9, burning sensation in her stomach and head, sore throat, ear infections. My daughter is 9 and never had an ear infection or sore throat until November of last year, since then she has one atleast 3 times a month. We took her to an herbal irisologist and they told us the medication we had her on was attacking her body and immune system. I took her off of the Vyvanse about two months ago, the first month I really couldnt tell a difference, the 2nd month Vyvanse free she is a whole new little girl. She just recently got her first ear-ache since we stopped the medication, but the herbalist said it would take a while before we got it out of her system. I hope this helps you. Good luck to you. Reply
Val, Community Member
6/ 3/13 11:17am
Judy, my daughter took Vyvanse for around 18 months as well, within 9 months, my daughter started having the following symptoms atleast 3 times a week, some everyday: severe headache, severe stomach pain, joint pain in her arms and legs. Within 15 months of taking the Vyvanse she started to experience the following symptoms on top of what she was already experiencing: low grade fever of 99.0-99.9, burning sensation in her stomach and head, sore throat, ear infections. My daughter is 9 and never had an ear infection or sore throat until November of last year, since then she has one atleast 3 times a month. We took her to an herbal irisologist and they told us the medication we had her on was attacking her body and immune system. I took her off of the Vyvanse about two months ago, the first month I really couldnt tell a difference, the 2nd month Vyvanse free she is a whole new little girl. She just recently got her first ear-ache since we stopped the medication, but the herbalist said it would take a while before we got it out of her system. I hope this helps you. Good luck to you. Reply
miloca, Community Member
7/30/13 5:31pm

Hi Val

 

Is your daughter doing better now, still? I am having bad, bad side effects. I forgot to mention thr ear ache in my response. did the herbal irisologist really help?

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miloca, Community Member
7/30/13 5:27pm

I have been on Vyvance for about 20 days and haven't seen any great change for the best. For the worst, the side effects are horrible. I am thin by nature, and have lost all my appetite, which is making my weight drop at at fast pace. Also I am having terrible back and neck aches, its driving me nuts. thats it, Im off it for a few days. 

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Subyru, Community Member
11/ 7/13 4:14pm

Hello,
I am a 44 year old male and I have been on Vyvanse for the past 5 months, and like many of you have experienced vast improvement in my mental cognition, as well as improvements in my mood and a general new found ambition towards life, especially during the "step-up" process.

I found this thread while doing a search for the proper method of weaning myself off of Vyvanse, and was surprisingly enlightened by discovering so much more information that I could have possibly imagined, so thank you in advance for your insight!

In light of most of the experiences and symptoms I have read from this thread, as well as my own, namely; pain and stiffness in my lower back, neck, shoulders, hips and knees, as well as occasional numbness in my extremities and pain in the joints of my fingers. Not to mention the thinning and brittleness of my hair and nails, along with the longitudinal ridges in my nails and discoloration of the my cuticles.

I have reached my "therapeutic range" of 70mg, and at the beginning of my treatment I believe I was over dosed starting at 60mg and felt a detached flu sensation 4 hours after my dose, then reverting back to a "step-up" process, starting at 20mg, where I would sometimes experience the same sensation towards the evening, where at that time of day it almost resembled a withdraw or hungover like feeling.

That being said, this is by no means my expert opinion (because I am not one), but merely an observation and a little research based on the information you all have provided, so thank you once again!

The Vyvanse seems to be causing at least the beginnings of what appears to be Secondary Raynaud's (syndrome), for which I have cited information below in excerpts from http://en.wikipedia.org/wiki/Raynaud%27s , in which I have added minimal personal opinion.

I tried to cull out as much scientific jargon as I could, so bare with me, and I hope you can recognize the correlation I am attempting to make.

Raynaud's phenomenon is excessively reduced blood flow in response to cold or emotional stress, causing discoloration of the fingers, toes, and occasionally other areas. This condition may also cause nails to become brittle with longitudinal ridges. It is a hyperactivation of the sympathetic nervous system causing extreme vasoconstriction of the peripheral blood vessels, leading to tissue hypoxia.

Hypoxia (also known as hypoxiation) is a condition in which the body or a region of the body is deprived of adequate oxygen supply. Generalized hypoxia occurs in healthy people when they ascend to high altitude, where it causes altitude sickness.

Altitude sickness—also known as acute mountain sickness (AMS), altitude illness, hypobaropathy, "the altitude bends", or soroche—is a pathological effect of high altitude on humans, caused by acute exposure to low partial pressure of oxygen at high altitude. It commonly occurs above 2,400 metres (8,000 feet).[1][2] It presents as a collection of nonspecific symptoms, acquired at high altitude or in low air pressure, resembling a case of "flu, carbon monoxide poisoning, or a hangover".

Furthermore, The (ortho-) sympathetic nervous system (SNS) is one of three major parts of the autonomic nervous system: the others being the enteric and parasympathetic systems. Its general action is to mobilize the body's nervous system fight-or-flight response. It is, however, constantly active at a basic level to maintain homeostasis.

Therefore, Stressas in the flight-or-fight response—is thought to counteract the parasympathetic system, which generally works to promote maintenance of the body at rest, so in my opinion it makes sense that the hyperactivation of the sympathetic nervous system, as cited above, may not allow the parasympathetic system to do its job of repairing the body while at rest, so with the exception of the rheumatoid arthritis which is already a symptom of Raynaud's syndrome, causing these back and muscle pains that a lot of us are experiencing.

Also, sufferers of Primary Raynaud's (disease) are more likely to have migraine and angina than controls.

Raynaud's syndrome, or "Secondary Raynaud's," occurs secondary to a wide variety of other conditions. Secondary Raynaud's has a number of associations:
•     Connective tissue disorders:
    ◦    scleroderma[7]
    ◦    systemic lupus erythematosus
    ◦    rheumatoid arthritis
    ◦    Sjögren's syndrome
    ◦    dermatomyositis
    ◦    polymyositis
    ◦    mixed connective tissue disease
    ◦    cold agglutinin disease
    ◦    Ehlers-Danlos Syndrome

•    Eating disorders
    ◦    anorexia nervosa
•    Drugs
    ◦    Beta-blockers
    ◦    cytotoxic drugs - particularly chemotherapeutics and most especially     bleomycin
    ◦    ciclosporin
    ◦    Bromocriptine
    ◦    ergotamine
    ◦    sulfasalazine
    ◦    anthrax vaccines whose primary ingredient is the Anthrax Protective Antigen
    ◦    stimulant medications such as those used to tread ADHD

Although there are some similarities stimulant medication and Raynaud's phenomenon share, there seems to be additional symptoms that may point towards Raynaud's syndrome being the cause of Vyvanse usage. This could possibly be the result of the unique delivery method by which Vyvanse enters your system, by binding to red blood cells which also carry oxygen through your body?…

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Subyru, Community Member
11/ 7/13 5:23pm

                                             ***edit***

Sorry type fail, at the end there I was meaning to say "Raynaud's syndrome being caused by Vyvanse usage".

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Brandy1978, Community Member
11/17/13 4:45pm

Im a 35yr old female and have been taking Vyvanse for 3 days. I had no symtoms the first day but yesterday the lower back paint started and today it has continued and gotted a little worse. Its moved up my back slighty today. Ive done nothing to strain myself so I know its the meds and Im very aware of my body. As for other feelings yesterday I felt somewhat like I wanted to just be alone. Felt bug eyed and just wanted to not be around other people.( I think for feared people would be able to tell I was on something or just wasnt myself) 

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Yehna Dublin, Community Member
12/22/13 3:05pm

Hey guys, So I started using vyvanse several days ago. I have gotten hit with flu-like symptoms and have significant difficulty with performing daily physical tasks. Keep in mind, I am a 21 year old female. I have significant back pain and tightness in all joints and muscles in my body. Since I am very active, this is not completely unusual as I have had a history of muscle pains and aches (from only personal observation) due to consistent exercise. However, I am thinking after taking vyvanse for 3 days, I might stop considering the stories mentioned on this thread from more long-term users.

 

From general observation and trend in this thread, Vyvanse truly strikes me as a drug that ultimately causes weakening of the immune system. In my own basic tests, I discovered a much higher resting rate even days after I stopped Vyvanse. My resting heart rate, has gone from what the American Heart Association considers "above average" among my age group and gender, to "below average". Without professional certification of course, my opinions and observations may be incorrect or insignificant--so take with it what you will as with any source of advice. With this said, I believe with Vyvanse causes much more irregularities in a healthy individual than just a change in a resting heart rate that I have yet to discover or indicate here. Simply taking the change in resting heart rate in my case, I believe over time this high resting heart rate will cause significant damage in a macrosense. The medical research focusing on an elevated or irregularly high resting heart rate over time is significant enough to cause raised eyebrows for the drug. 

 

 

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Locri, Community Member
1/ 8/14 9:49am

I had what seems to be a similar reaction with Vyvanse.  It wasn't very noticeable for me at 40mg, but when I went up to 50mg I had very tense muscles, stiffness, and joint pain all over after only 3 weeks of taking it.  Going off of it for a few days noticeably reduced the joint pain so I stopped entirely, but it took awhile to feel completely normal again.

 

I have a question for anyone else experiencing this:  Did you experience the same problems with any other ADHD medication, particularly in the same group as Vyvanse (IE, Adderall, Focalin, etc.)?  My doctor refuses to let me try those because his assumption is that because Vyvanse caused such joint pain that the other ones would too.  I'm getting really frustrated because so far Vyvanse is the only drug that has noticeably worked.

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Gamble43, Community Member
2/16/14 10:49pm
My left arm got very weak about 6 mos after taking vyvanse. Also an exacerbation of back pain. (I also took provigil about 10 yrs ago and developed the same problem- left arm got very weak after about six months of taking it, strength came back a few months after discontinuation). I told my dr that I suspected vyvanse had something to do with arm weakness (also had tingling and my posterior deltoid had atrophied so much it looked like there was a hole there). He said no way and referred me to an Ortho. Bad vyvanse press would be really bad for business for him, so there is some bias. The Ortho suspected torn rotator cuff, ordered MRI, but turned out not to be the case. Drs diag was nerve impingement, sent me to PT to strengthen muscles. It is up to the patients to report these symptoms to FDA! Please consider doing so if you feel it is a medication effect. Just go to FDA.GOV. The doctors are not going to report it and no one else will, it is up to those of us actually taking the meds! (And/or their parents)! Reply
kka, Community Member
4/14/14 10:59am

I've been taking Vyvanse for a few years (70mg). About 6 months ago I started noticing trouble swallowing... After a few tests, I was diagnosed with "near total failure of my esophageal peristalsis". Recently I've been noticing a tremor in my hands. I've been thinking the worst (ALS, Parkinsons, MS...), but it JUST occurred to me that this all may be triggered by the Vyvanse.

 

Any thoughts out there on this (or other experiences)??? If it is, are these things reversable if I stop taking Vyvanse?

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Jeff Thomas, Community Member
4/20/14 9:59pm

My wife has every symptom mentioned here. She has been on 120 mg for 2 years. I hardly know who she is anymore because she' hooked on it. When I talk to her in regards to it she gets defensive. She can't swallow and her neck muclses, which she had a nice hefty almost beautiful well defined neck is now gaunt and thin. She looks sickly. The other thing with this medication is it raises the resting heart rate about 30 to 40 beats per minute. Thus the reason for weight loss. The problem is the human body needs to lower the resting heart rate for optimum health, thru

areobic exercise. I think this is bad stuff!!!!!

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kka, Community Member
4/22/14 1:07pm

I am very sorry to hear about your wife.  Did you know that 70mg is the UPPER LIMIT that is approved for Vyvanse.  Taking 120/day is nearly twice that.  I fear that your wife may be addicted to the substance rather than taking it for therapeutic reasons. 

 

BTW, I have been tapering down little by little and today is my last day taking it.  (And already I think tremor is nearly gone, and swallowing issues are starting to improve.) To taper down, I simply opened up the capsules and dumped a small amount into the sink and washed it down quickly, and did this a little more each day, until today where i only was taking a very small amount.  Pills are gone, and i don't plan to refill.  I've been substituting coffee for the morning pill for the last week in which I've been doing this.  For the amount your wife is taking, tapering should probably be done VERY VERY gradually, and as i read on another forum i think "never ever go up- always stay flat or go down".   I miss my drug, but not as much as i have when I would accidentally go without a pill in the past (perhaps due to having forgotten to fill it).  Anyway, she will have to see what it's doing to her and want to taper down or get off.   Where is the doctor in all this??  Really, speaking with her doctor should probably be the next step.  Good luck to you (and her!)!

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Holly Did, Community Member
5/12/14 7:16pm

I'll throw some weight on this. I already have lupus- that's why I take Vyvanse. It's frightening to me how much faith people place in doctors... I guess I've been to too many. You can look at the range of side effects for the drug itself, and the class that it's in- peripheral vasculopathy is a (drug induced) form of vasculitis that fits every single one of these symptoms. It also occurs in autoimmune diseases.

 

PERIPHERAL VASCULOPATHY. Check it out. Vyvanse changes your brain chemistry, hormone balance, liver and kidney function, all endocrine and excretory functions... It seriously alters the cardiovascular system, potentially causing permanent damage. Depending on your physical health and co-morbid conditions, prolonged use is certain to have some detrimental effect.

 

The neuralgia and myalgia, myopathy, bruising, kidney pain, edema, tachycardia, stroke-like symptoms... I'm really shocked any doctor would not connect dots one can look up on Wikipedia. Those of you who have gone to several who have all shaken their heads, I'm sorry for all the trouble.

 

The guy above me? His wife is likely dead or in prison (for killing him). Given that there's a fair chance of having a psychotic episode, and about 10% of those people never come back, 120mg would raise those stakes considerably. 

 

Yes, I still take it because I have to work. I'm on 40mg a day. I've been on it for 7 months. The side effects increased over time. I've been splitting up the medications I take, hydrating and restricting sodium, potassium, caffeine, saturated fat and anything that stresses my system excessively. That is providing some relief, but I know I need to go further. Being on a restricted medication requires a higher degree of personal responsibility. I sincerely wish doctors would convey that to their patients, and take some themselves. 

 

Besides those restrictions, be sure to consume enough Vitamin C in the evening, and regular doses of B vitamins with folic acid. A good collagen and hyaluronic acid supplement will help repair the damaged tissue and replenish the lost synovial fluid.

 

I should mention that omega fatty acids (3,6,9) increase cell wall permeability and flexibility, which is not particularly awesome when your blood vessels are already going *pop*. Those stay in your system a long time, so lowering all fat in the diet and reducing cholesterol is a good idea. 

 

Hope this helps someone- I sure wish somebody had told me. 

 

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taylrrae, Community Member
5/31/14 4:18am

I take 60 mg vyvanse and have every single symptom you have and then some, and I have been to countless immunologists, etc.. for a long time everything came back relatively normal or not abnormal enough to be indicative of anything. Finally I just recently got my thyroid stimulating hormone (TSH) tested, and it turns out I might have hyperthyroidism. I'm going to an endocrinologist to get a bunch of labs drawn and like all kinds of ultrasounds on my neck.

Maybe that's it? I mean I seem to have textbook autoimmune disorder symptoms, so I'm hoping this comes back conclusive so I at least have something that I can treat, you know?

 

Anyway... if you haven't already you should get an Epstein Barr Virus (EBV) antibody blood test, because that can cause Myalgic Encaphalomyelitis (ME aka CFS) which mimics a milder MS or fibromyalgia and could cause a lot of your symptoms - it you have that then at least it wouldn't be forever. And EBV can be atypical - so even if you don't have the huge lymph nodes you could still have it.

 

Also - get your thyroid checked out.

 

Lastly, I've been battling with on and off weird symptoms for over a year and I'm just a 19 year old trying to get through college. I know it gets hard if anyone does... wondering if it's in your head? Could your medication be causing it? 

 

But just keep faith that it WILL get better. And keep getting tested until you figure this thing out! You know your body, and if you feel horrible and have the numbness and the tingling and Raynaud's and discoloration, and flu-like symptoms, etc... I doubt it's in your head, so just keep toughing through it and know that you're not alone.

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taylrrae, Community Member
5/31/14 4:24am

P.S. google raynaud's do your hands and feet get really cold and numb and change color sometimes and others get super hot and in pain?

 

Also - do you grind your teeth? 

One thing I KNOW that the vyvanse caused was my horrible teeth grinding - I think I have a TMJ issue now - could almost swear it - I've been on vyvanse for the exact same amount of time as you and I swear - I wonder if I have arthritis half the time and have the medical issues of a 75 year old.

 

But like I said - stay strong and keep getting tested - that's the only way you'll get any resolution. 

 

Once you run out of tests then you can worry about that.

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taylrrae, Community Member
5/31/14 4:24am

P.S. google raynaud's do your hands and feet get really cold and numb and change color sometimes and others get super hot and in pain?

 

Also - do you grind your teeth? 

One thing I KNOW that the vyvanse caused was my horrible teeth grinding - I think I have a TMJ issue now - could almost swear it - I've been on vyvanse for the exact same amount of time as you and I swear - I wonder if I have arthritis half the time and have the medical issues of a 75 year old.

 

But like I said - stay strong and keep getting tested - that's the only way you'll get any resolution. 

 

Once you run out of tests then you can worry about that.

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We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.

By judy, Community Member— Last Modified: 05/31/14, First Published: 12/16/09