I just can't live with this nausea, numbness, dizziness, and incredible fatigue from the methotrexate. So many of you guys have had some success after a period of adjustment but after five weeks, I'm just getting sicker. I am up to 12.5 mg per week; I don't know if that's high or low but evidently it's too high for me.
How does your body react when you stop this med? Many thanks and blessings for listening to me.
Patience you have only given it five weeks, the side effects will taper off, get some marijuana, don't worry about eating a meal, snack on crackers and chicken soup, drink lots of water, and give the Kemotherapy a chance to work! Remember you don not have cancer and the level you are taking dosent compare to te extensive amount that you would have to take if you were Fighting Cancer!
My Black lab had got hit by a car and had brain swelling, she after recovering had seizures, the first three weeks of taking Phenobarbitual, She couldn't walk and was lethargic, listless, then her body addapted to the chemical now she runs and plays like she did before, so give your body time to addapt to the chemical that will taper thee agressiveness of your ammune system.
I Love Ya Girl! Hang in there! The dizziness and nausia are the Methotrexate, but the fatigue and numbness are part of having RA and something you will learn to live with, Yoga, stretching, jacuzzi, increase ciruclation and that can eleviate the numbness, High vitamin and mineral intake with diet and exercise will eleviate the fatigue. Even when you feel too tired to move push your self to swim or walk, excercise makes your body produce (endorphins) Natures Crack! Love You, Till Later, P.L.U.R.
I know, you're right about only giving it five weeks but it's making me so sick. Every week is worse. The RA causes all of us to have a certain amount of fatigue but this isn't the RA - I'm fine on Monday through Thursday until I take the Metho. Then it's like I got hit by some sort of deranged truck. I have dry heaves, too. And my fingertips feel like cotton balls. I just don't see the point now because I felt a lot better before I started this stuff. Today was better than Thursday so tomorrow will be better, too. I just can't tolerate this chemical. ugh. Thanks for your caring and you are awesome girl. ---Amy
Hi,
I tried methotrexate for 7 months by injections once a week and was horribly ill from it to the point I was in the bed from Friday after work when I took the injection from the doctor until Monday morning. I explained this to the rheumy I had at the time. He refused to consider other possiblilities (granted it was 1994 & there were not as many options). However, when he said to me"If you want to be my patient, you will take it!" My reply? Guess we are done then! I stopped it immediately and found another rheumy. No effects from stopping aburptly, other than relief!
Later I found out that the reason I was so incapicatated (extreme fatigue and nausea) from the drug was that I had had Hep C and hadn't know it, so the drug was just too hard on my liver. I still have to be careful of what I take and the impact on my liver.
I do not agree as one commenter stated that you should keep at it as it is not as large a dose as some cancer patients. Bottomline I believe you should listen to your body. No one else but you should ever tell you what to do, listen for options and speak up when it is not working...be proactive but don't panic. I have found that the joint damage comes slowly.
I was diagnosed in 1993 when my spouse of 24 years left. I became a single parent of three teenage boys without any support from family, in a new community and had a horrible boss. It was tough but it is amazing what one can handle. Keep focused on creating a healthy, happy life and finding blessings and joys in what is around you. You will get through this one step/day at a time.
Diana
Amen!! I have heard sooo many bad things about methotrexate, i wont go on it. My Drs want to try becasue i have bad reactions to EVERYTHING else. I have way too many bad reactions and allergies and have problems with my eyes , stomach, and reactions so he is putting me back on prednisone again. i cant take all the other injectables. i also have 3 other people i know who had to go off it also because it ruines their liver. So listen to your body!! i hate the pain i am in everyday 24/7 but cant stomach the sickness it causes and the liver problems. i know there are some people who do well on it but they must be normal with no other problems?? colleen
Colleen,
I read an article the other day that stated that even with methotrexate and the other biologics that came out in the past 9-10 years, RA suffers do not have substantially better results.
I have tried them all it seems. I'm in a funk about it...wanting to have good quality of life but wondering whether that is possible when so many reactions and liver damage come along with these utterly expensive drugs.
Personally I'm at a lose. Family and friends are having a hard time understanding my present position not to take anything. Everyone has an opinion. Ultimately, it's mine to make and for now I'm saying no to the drugs. I do reserve the right to change my mind.
Blessings to you.
Diana
thanks. yes i agree, noone understands and its our own choice. we turn to docs for help and guidance, doesnt mean we have to do everything they say. i have had some drs who get nasty when you dont do what they want. i have had some bad ones this past year. pulmy dr the worst. so i am at a point to do nothing right now. who knows maybe next week i will feel different. its a daily struggle and in much pain even with meds but am not ready to take the meds that slow progress yet. i have them sitting here too. i guess i can function somewhat and have really bad days most of the time but have a good supportting hubby and kids. i keep busy as i can making jewelry. thats my therapy. and yes its funny cause my hands are bad, have good tools with big grips!! haha. i just know too many people that have had bad reactions or one friend passed away and that scared me. i am sure there are many people who have good reactions and no problems with meds but i am one that has problems with evey drug, period! so its an indevidual choice. stay in touch, colleen
Hi Colleen
It's nice to have an on-going conversation with some one who understands. Felt like the post was a black hole for a long time...this is great.
So I lasted with no drugs until the middle of April when I was no longer able to do the daily living activities by myself. I said 'uncle' and got a shot or a long acting cortisone-based drug. Not great for the bones or the blood sugar but...
I also have adrenal insufficiency problems which further complicates things and is why I need cortisone too. so I'm taking daily low dose hydrocortisone by mouth (not prednisone) and getting long acting shots every 2 months.
My husband's reaction the day after the shot was "yes!, she's back!"
So I'm still trying after all these years (like the Everyready bunny!) to find balance with quality of life, cost of meds and their reactions on my body. It is a tough nut to crack but like one dr says, I'm stubborn. He didn't mean it in a positive manner either but it is one of those traits that has benefits if you use it in a positive rather than a negative way.
I should note that I'm feeling more hopeful than my March note...comes with less pain.
Hang in there :) Diana
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funny, thats what everyone says abt me9stubborn) Drs too. but they know me by now and kinda accept it but when i come in crying aying i can take it no more, they try to get me to try something new. unfortunatly, medicare doesnt cover a lot of the drugs(i am disabled) and i cannot afford the copays for them(dmards). and have had bad reactions to a few. i am stubborn abt my body. good to some but not to all. it keeps me going and thats positive. people say you look good and i say, amazing what a little make up and curling my hair does?? or i try to get out and about because i have always been very active and they think i feel ok(friends) its really madning to me, they truly do not get it. my hubby is only one with exceptiion of good friend whos hubby died from complications of RA a little over a year ago. the meds caused lymphoma, and he was a good friend. so thats the one lady who does get it, she has helped me a lot to know i am not alone and she boosts me up when i need it most. my hubby also says people dont get it. so its a silent disease i feel sometimes because of it. what do people expect me to do? walk around and look like death? i have some pride in what i look like. even if i feel like it. i wish i could go on tv with others and tell a story to everyone about it.. I also have lupus so it makes it double hard on mt body. along with colon problems, previous heart attack, and Drs say organ involvement(short of breath) who knows at this point. so i am not sure if i should try the meds or not. i would love a natural way instead. i was on seroids for years for colon and it caused cataracts in both eyes. had new lenses 2 yrs ago but eyes are getting worse again. UGH! i feel like a walking mess. haha. I do have a great God who helps me through the day and am thankful for great church home group i go to weekly. i look at it this way, i have many blessings in my life and some bad stuff(health). cant have it all i guess so i try to focus on the good things on good days and bad days, well i have bad days, thats all i can say. i hope the injections keep working for you, it seems to be not a bad choice for now compared to the other drugs out there. stay in touch. : )
Hi again Colleen, a nice celtic name ... I have the celtic roots myself!
Colon problems too-diagnosed with that first a long, long time ago... And at first they said lupus with me as well but the second test was not positive for ANA antibodies.
I was finally diagnosed after multiple huge stressors in my life, although I suspect I had it for many years.
I agree, people do not get it. Folks tell me I look so young and vital, I'm 60 now but inside....wow! The thing is I never know what to say when they ask how I'm doing.
Do I respond with the facts and sound like a complainer?
Do I gloss over it and not let them know how much pain I have and not use the opportunity to educate them?
I am also disabled since 2003. It's is in every joint, including most of my spine, except for my right jaw. I have 12 screws and 4 rods in my spine too. With a flair, I cannot open my mouth enough to eat.
Everyone thinks it is like their osteoarthritis where I live in an active senior community. I have that too from being a ballet dancer in my youth and so I am used to pain, but honest, when it gets the whole body at the same time, it is overwhelming...and yet I hate to sound negative and as a complainer. Most of the time, I seclude myself until I feel better. I have given up a lot of activities in the neighborhood as a result.
Do you have alot of problems with infections? I do especially when my shot is wearing off...
keep in touch
Diana
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hi. no you dont sound like complainer. i get it. i hide it well most days, that what people dont get, do ya really want to know how i feel? or sugar coat it? i feel awful every day, period.
yes i have hadd shoulder sx in oct and other one needs it too but it was too painful so no as of now. my whole spine is effected also and all my joints. you just learn to get through it somehow to function daily or we would be in bed every day!! it forces you to get out of bed(that is a hard thing too). colon problems x 20yrs plus. i need to get scoped too but hate the prep so i keep putting it off. i really feel a tug to get checked. mom just died and had ruptured colon, thats how it all started. and i currently have issues with colon just not bleeding so i put it off. keep getting eyes checked because of the meds you are on. i had bad cataracts from steroids over the yrs. i do have lupus and RA. and colon. they say i also have crest syndrome. so they say. had issues with heart and lungs past months. on meds for imflammation in lungs, helps a little. well enough for now, have to rest, just came down with cold,sore throat. UGH. and i need to go. nice chatting. stay in touch(i am 48yrs old)
I have used accupuncture for over ten years. It is very effective, if you find a really good accupunturist and can afford the time and money to receive 2 to 3 treatments a week for a month. Then you need a once a week maintenance and later maybe once a month as you feel the need. My accupuncturist is wonderful and her staff is very loving and empathetic. Be sure you find the right one for you. I can't really afford the time or money to get treated like I need, but when I can it makes a world of difference in pain,well-being and energy.
I once decided to go off all meds and cure myself the natural way. I found this lady by the name of Margie Garrison who wrote the book I cured my arthiritis you can too. I used her methods and got to know her personally and lost about 100 lbs in a year and the only pain I felt was when I ran or tried to do sports because I was not in shape. But I have since gone back on medicine because I went back to unhealthy eating. I am in the process of dropping the meds and going back to mostly organic and such I'll let you know how it goes. I miss those days I had when I followed this lady's advise
Hi ladies. I'm new to this conversation but wanted to see if I may ask a question. What do yall have?
I have Polymyositis, Systemmic Lupas and Reynaud's Syndrome since December 2011 - roughly 6 months now.
I am now being told something completely different from another Rheumatologist, so I'm going for a 3rd and last opinion now.
One says I have Polymyositis, primary diease. The other says my lab work is perfect, get off the methotrexate, prednizone, etc. as I'm in remission and the drugs are what's dragging me down and making me sick. The other wants to increase the metho and by July 2nd, if I still feel like it doesn't work (3 months later), then move to Infusion.
I read the biopsy report from December and it didn't say "inflammation" of the muscles which IS Polymyositis.
Thank you ahead for your response,
Jocelyn
Hi,
I tried methotrexate for 7 months by injections once a week and was horribly ill from it to the point I was in the bed from Friday after work when I took the injection from the doctor until Monday morning. I explained this to the rheumy I had at the time. He refused to consider other possiblilities (granted it was 1994 & there were not as many options). However, when he said to me"If you want to be my patient, you will take it!" My reply? Guess we are done then! I stopped it immediately and found another rheumy. No effects from stopping aburptly, other than relief!
Later I found out that the reason I was so incapacitated (extreme fatigue and nausea) from the drug was that I had had Hep C and hadn't know it, so the drug was just too hard on my liver. I still have to be careful of what I take and the impact on my liver.
I do not agree as one commenter stated that you should keep at it as it is not as large a dose as some cancer patients. Bottomline I believe you should listen to your body. No one else but you should ever tell you what to do, listen for options and speak up when it is not working...be proactive but don't panic. I have found that the joint damage comes slowly.
I was diagnosed in 1993 when my spouse of 24 years left. I became a single parent of three teenage boys without any support from family, in a new community and had a horrible boss. It was tough but it is amazing what one can handle. Keep focused on creating a healthy, happy life and finding blessings and joys in what is around you. You will get through this one step/day at a time.
Diana
Different people have different reactions to medications and each of us decide what is a tolerable side effect and what isn't. What you're describing certainly sounds like intolerable side effects - this medication is supposed to help you feel better, not debilitate you in another way. That said, you may want to consider moving more slowly with increasing the meth. I am very sensitive to medication and any time I start a new medication, I insist on starting at half the regular dose and increasing the medication as my body adjusts, i.e., with me assessing whether I'm ready for the next increase instead of blindly following the "accepted" way of doing it. This confused my doctor in the past, but she's come around after years of witnessing that this works for me. You have options - you can either go back to your doctor and put your foot down, requesting another type of medication or you can decrease your dose significantly and see if you body adjusts in such a way that the side effects are tolerable.
Good luck - please let us know about your progress.
I was told by my Dr. that it is very dangerous to just quit metho. I have been on it foe 8 months so I know how your feeling..I'm also fatigued the day of I'm mostly in the bed. Everyday after that , is just slowly allowing me to move a little more..then here comes tuesday again ! Then the cycle starts over..I take 6 tabs every tuesday..my Dr. told me to up it to 8 tabs , but I got so sick and vomiting the next week I took 6 and told him I cannot do the 8..I also take a low dose of predizone 5mg every morn to keep the swelling out of the joints..thats what causes the pain..Since I started the predisone I don't hurt in my joints as bad. The Mexotrexate is only for slowing down the RA that is attacking your joints and eating away at your joints...So if you stop it, then you will have a relasp that can cause immense damage to your joints and will make it harder to try to get it into re-mission . I thought the same too..I wanted off.!But I also want to be able to walk and not be in a wheelchair ! By the way I take 15mg per week..At first I bought Immitrol for nausea and took it 30 min before taking my pills and it works..But I don't need it hardly anymore. Hope this helps!
Tisha in N.M.
Hi Tish, thanks for your post - I didn't go off of the methotrexate without my rheumy's approval. He said to stop it completely and start on the Arava, which I haven't yet started. When I finally said "enough!", I put a call into him and he said to just stop. No problems at all and it's been more than a week now. Everyone reacts differently, as you say. I will continue with the meds because of what you mention - joint damage. I still take a small amount of prednisone and plaquenil for now. But you bring up an excellent point - don't just discontinue any of these meds without consulting with your dr. first. Thanks again and hope your ra is managing well. Blessings.
I have been on 10 mg for yrs and had no ill effects, so maybe your rheumy can lower your dose. Mine just increased mine to 15 mg. I took it yesterday and am ok so far, just a little tired. I stopped and got some nausea med on the way home but didn't need it. My doctor prescribed Provigil to take for the fatigue. I also take Orencia IV but my sed rate is still 95. I don't think I'm getting better but I'm not any worse. :)
Hang in there and good luck!
Linda
Alright, heres my say. Im 17 yeas old, i ws diagnosed with ruematoid arthritis a year and a half ago. id been on mtx and prednisone for the first year. i was up to 20 mg of mtx. i tapered off the prednisone, and im completely off of it. but my dr. told me i had to wait till i was 18 to try tapering off of my mtx. i was sick of the side effects, and just thinking about swallowing the drugs makes me ill. one day about 4 months ago, i decided to just stop taking it. ive had no flares since. altho this probably isnt recomended, it worked for me.
You listened to your own body and made a good decision to stop the mtx. I think each of us has to do what we feel is best in our situation. What might work for one wont necessarily work for another. I think it's great you got yourself off everything in your own way and it's been a good outcome. Congrats.
Oh gosh I'm the same way. I just got off the methotrexate. First I was taking the methotrexate orally and I kept vomiting. Then earlier this week I tried the methotrexate through injection and oh boy! This is the first day I've felt halfway normal since last Monday. I spent the whole week in bed vomiting all week. It got so bad I had to go to the ER because I couldn't keep any fluids or food down. The medicine for me at first was my miracle-I was almost in complete remission. But then all of a sudden my body has no tolerance for it at all. I'll never ever take that medicine again. For everyone it's helped I wish you all so much luck! I'm sorry it didn't work out better for me but I know for alot of others it's been great.
Boy do i ever know where you are coming from!i started off on oral meds, no change in symptoms have been on injections for 10 weeks, during this time i have experienced nothing good at all symptoms range from night sweats to nausea , recently i developed multiple infections in upper respitory tract, 3 weeks later despite antibiotics, nebulizers and puffers i still have symptoms, i quit the methotrexate a week ago and am feeling better already, for me it's a case of do i put up with the pain from Ra or become a semi invalid due to side effects .
I hope you feel better soon.
And I can't forget to mention the terrible effect methotrexate had on my hormones. I was emotionally on a roller coaster with nasty sores all over my face. I had to come off this medicine one time before and it was horrible!! If you come off the medicine please try not to come off all at once. Ease yourself off if you can if it's affecting you emotionally like it did me. Trust me! :-) good luck
Thank you to everyone for posting. I came here looking to see if I could stop mtx without side effects too. I was diagnosed with RA about 6 months ago. I'm a middle-aged female.
I was started at 12, then up tp 15 of mtx. No nausea or anything and it's helped calm the flares,but I don't sleep well,feel like I'm on steroids or something,all pumped up.
I'm wanting to deal with the stressors,make changes in my life and try to be healthy that way. I know I got sick because of stress. I'm female and middle-aged. I know it's a real disease,but I have to wonder if changes in living,diet,etc,could be just as effective as medication. I was working a job I hated and other negative things going on in my life when it started.
I will consult with my doctor also,but I've had it with this illness.
I'll let you know if it works. Good luck to everyone.
Well I don't know about you,but I am stopping..(cold turkey) I've been on Meth for about 3 months now, and now found out I have Megoblastic Anemia from it. Well I will not tolerate the side affects no more (mine were sleeping 2 days straight after taking it, and naseua also) Also they don't tell you about another option for treatment either , it's been around for 50 yrs. And alot of people are living normal lives..including remission from this RA.. Called----Antibiotic Protocol (pioneered by Thomas McPhearson Brown. Do your homework and arm yourself with knowledge on this treatment. Most mainstreamed Dr's won't use it, or deny its existance. I've done months of research on looking for alternative treatment, other than what they only want you to know. And found this, there are Dr's out there who will treat you, you just have to ask. My appt is on Feb 8th 2011.. So i know i must have a 4-8 week washout from the Methotrexate anyway.
Like I said, look up the Road Back Foundation website, that is still keeping this AP treatment alive. Along with Dr. Mercola, and Dr Gabe Mirkin..
Follow-up to comment from before- I am still on it. I went off of it and flared and could hardly walk from the swelling and pain in my feet. Limping home from a day at the ER through the take-out line at Panda Express.
I'm going to try reducing the pills from 8 to 7 then to 6,as my doctor recomended. Every night no matter what the weather is I sleep in light clothing with the AC running and a fan on. Permamnent menopause?
Other then that and feeling tired generally,my joints are pretty good, can do anything I want to really... just the fatigue is a problem.
I almost wish I looked sicker and people would not expect so much. They think I'm being a diva if I don't want to go somewhere. I appear normal but want to be carried around by servants. I've seen every moive worth watching.
I'm on Enbrel and mtx,folic acid.
I was diagnosed with RA Summer of 2009. I was put on Meth once a week 4 tabs pill form. I too was ill while taking. Losing hair, eyebrows, and marks on my face. ( dark spots ) Then Rheumy increased to 6 the Meth as I was having terrible neck and shoulder pain. Took that for quite awhile. Then told him I wanted to reduce the meth and I went down to 5....
I was told not to drink ever. But every once in awhile I had a drink or wine. On Dec 4, 2010 had some wine and the next day my legs broke out. Thought it was the sulphites in the wine. Then took the meth on Monday the 6th of Dec...my legs were soooooooooo broken out with a rash. I called the Rheumy who is far away from me...and all I ever talk to is the nurse (not right away) like at the end of the day when they are finished with patients. She told me I shouldn't drink! She told me she would call me the next day to see how I was. NOT the Rheumy!!!! I never really think talking to a third party is going to get the story straight. She calls on Tuesday and says stop taking the meth and see if your legs clear up. I told her I already took it! So she said to me don't take it next week and then call me and let me know if your legs clear up. I told her I was going away for a week and that I would be back on the 17th of Dec. My legs cleared up right away....and I never bothered to call her! I wanted to talk to the Dr. They have note even called to see how I am feeling!!!! It is Dec 25 right now. I have not taken the meth this week either. OHHHHHHHHHHHHHH I feel sooooooooooooo much better. My neck and shoulder still hurt, but not too bad where I can stand it. I do not intend to take meth....but I do need to find another Dr...and I am in the process of doing so. I have a problem with other drugs. I am allergic to cortisone, and just about everything. My body does not tolerate drugs at all. Antibiotics either!!! So when the next episode happens...I can be in real trouble. On meth I was not able to have surgery either...because of the auto-immune disease. My Sed Rate is high...and just don't know how to get it down. Carole
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Amy,
I had to stop MTX as it did the same or me as well. I could not live with it as well. Not only did it help my joints, but at the same time it destroyed my immune system. I had pneumonia 3 times and took MXT for over 6 months. It was because of this that I finally gave up on my bad rheumy and got a new guy. MTX is not the only drug. Please make a appointment now and speak with your rheumy that you simply cannot take this drug. Ask for other options. Make sure you are drinking plenty of water, and try some antacid, pepto helped me with nausea as well as alka seltzer.
Basically when you stop (at least in my case) you feel better. It takes a week or so, but you will feel better. I did not have any side effects from stopping. I did relapse and had a flare. the new drugs I am on are much better for me. As you know one size does not fit all when you have RA. Get your doctor to try other meds. Or find a rheumy that will customize your treatment to you.
Best of luck.
BJ
Oh I forgot, I was on 16 MG oral once a week, and because it made me so sick orally my old rheumy put me on .6 ML subcutaneously injection once a week. I don't mind sticking my self so the shot took away some of the stomach nauesa. But ultimatly I had to stop it. I take Arava and Enbrel (have to stick myself with Enbrel) and I am having good success. However it is too soon to tell if it will last.
I think you are on a normal dose. Please speak with your rehumy.
BJ
Hi bj,
May I ask how you went about stopping the methotrexate? I mean, did you just suddenly stop taking it or did you taper back, like prednisone? Because I don't plan to take ANY anymore. I so truly appreciate your help.
Amy,
I went to my Rheumy, and he told me to just stop. So that was what I did. I had no side effects from stopping, and I just gradually got better. It will take about a week or so before you start feeling better.
BJ
Hi BJ, that's what I think I will do. It's good to know I won't go into some weird withdrawl or something. I'm also calling to schedule a consult with a different rheumy tomorrow. thanks for telling me...Amy
Hey, I just wanted to say thanks for asking this!
I'm 16 and I have a condition in my eye and they have been using methotrexate to treat it for nearly a year,
I have suddenly stopped taking it now because it makes me feel very dizzy/dehydrated/sick the next day and it makes me feel like my blood pressure rushes.
Im speaking to my doctor about it soon though, as apparently you're not meant to stop it suddenly.
Thanks again for asking this!
Ive trawled the internet looking for answers to it, and this is the most useful info i have come across!
Good luck with your treatment
Kasey x
alka seltzer and pepto are both full of aspirin.