• Jackie Jackie
    June 22, 2010
    What happens if I stop Methotrexate suddenly?
    Jackie Jackie
    June 22, 2010

    I have been on Methotrexate now for three months. I have become so exhausted and weak, that everyday activities are much more difficult. I have gained weight, even though I have been eating less due to lack of money for groceries since I have to pay for all these medications with no drug plan. Now, I have run out of money and the medications and have found no way to get help. Does anyone know what the side effects to going off Methotrexate suddenly will be? I am worried about it. The doctor just tells me not to go off them...but i have no choice. I am also taking folic acid and Hydroxychloroquine. And I am out of them all.

    READ MORE

FROM OUR EXPERTS


FROM OUR COMMUNITY

  • ronie June 22, 2010
    ronie
    June 22, 2010

    Jackie,

    I am sorry that you are having such financial problems.  I know that kind of stress can cause symptoms of RA to be so much worse than they need to be. 

     

    First off, please contact your local hospitial district or human services for assistance.  Here in TX,  I went through county health care to get back on my meds when my finances ran out (it took a year for me to start receiving disability benefits and basically did not have a pot to pee in much less buy meds.)  Somewhere near you Health and Human Services or some kind of Social Services should be able to direct you into the right direction.  (or you can send me a private message and I will help walk you through the steps.)

     

    Second, there should be no drastic effects of going off mtx cold turkey.  When I became extremely ill a couple years ago, my doctor actually told me to stop taking all my meds immediately, except prednisone which should be tapered.

     

    Third, weight gain is not a side effect of mtx.  However, it is definitely without question a side effect of prednisone if you are taking it. 

     

    The overall lack of energy is from RA  itself not a medication.  There is so much going on inside our bodies that it forgets to supply us with energy.  Increase your vitamin intake.  I personally take Pre-Natal vitamins to keep myself healthy. No doctor has ever said anything against it.  Stay away from caffeine as it actually causes Ra flare ups. Rest and sleep as much as you can until you get back on your meds.  If you are able to, exercise to gain energy.  Start a high protein low carb diet to boost your metabolism. 

     

    Please send me a private message if you have any more questions or need more direction.  I have been in your shoes.  And you need your meds to stay healthy.

     

    Good luck, I look forward to talking to you,

    Ronie

    READ MORE
    • Jackie
      June 23, 2010
      Jackie
      June 23, 2010

      Thanks for your information. I have looked into disability and medical help but due to the fact that i still have a month and a half of Employment insurance, I am not eligible yet. So I have to wait it out. I have had arthritis for 20 years now, and so I know general fatigue is normal with the disease, but since I went on these meds it is extreme. Some days I can't even get out of bed, my muscles shake and almost give out on me. My doctor says it will get better with time on these meds. I am glad to hear going cold turkey off them won't hurt. Both my doctors said it will be bad if I do. I will go back on once I get some money, but for now I have no choice. I do take many vitamins to help the energy, but they don't seem to be helping for now. But I don't have actual Rheumatoid arthritis. I have a Seronegative Arthritis, and inflammation doesnt only happen in my joints, but in my organs as well...so there could be other reasons for the extra issues.

      READ MORE
    • eastcoastgirl
      June 23, 2010
      eastcoastgirl
      June 23, 2010

      My doctor lead me to believe that sero-negative RA is just "usually, but not always" a milder, slower progression type of RA--but I guess you can have sero-neg and have it be severe as well if you've been battling this for 20

      yrs. :( Because RA can give you the inflammation in your organs, I'm pretty sure sero-negative can too because it's just RA w/ out your RA titer changing or becoming positive. I know they took a chest x-ray on me because labs came back normal as they normally do, but they found 2 mild erosions (one in my hamate the other on my pinky finger) and so they wanted to see what the heart and lungs looked like and those came back fine. 

      Like I said, all that (sero-neg) means is that your RA titer is in normal range...but it's still RA an can cause the same amt of inflammation and damage to joints and organs. ~

      READ MORE
    • ronie
      June 23, 2010
      ronie
      June 23, 2010

      Dina,

      Being sero neg or positive means nothing.  It's just a test to determine the presents of RA in the body.  Nothing else.  No indication of milder, slower.  It's just a test. There are a lot of other tests they do on us to help determine the same thing.  I do believe you have been there and done that one...LOL

       

      Jackie says she has 20+ years of battling RA.

      READ MORE
    • eastcoastgirl
      June 23, 2010
      eastcoastgirl
      June 23, 2010

      LOL Ronie. I think I have had every test they can pull out of their butt in a short period of time. I know for the past yr, every lab tech at the hospital has used this line when I see 20 or more viles "please know that this is really not a lot, because if you were donating blood you'd see so many more."

       

      What I wanted to say was, listen I get all these viles done every 4-6 weeks, plus a urinalysis w/ each...so I probably have in a yrs time given a good amout of blood and urine. LOL. NOT to mention certain blood tests like the ch50 OR total complement has to be on ice real fast and when it's NOT, they have to call me for a DO-OVER. Tongue out

       

      I remember one of my Rheumy's saying..."Ya, normal range was like (I wanna guess 48-60 something for ch50, but I could be wrong..lol) and you are a 12." WHAT! I said. 

      He said if it was flagged as too high over the range we'd say there is inflammation in your body but sed and crp are normal as well...if it's too low like this shows, it's indicative of SLE most of the time or another AI disease. BUT we want to re-check this, because your c3 and c4 was normal."

       

      I remembering getting a call from the hospital's lab saying in transit, something happened w/ the ICE it was supposed to be in/on...sooooooooo more tubes had to be drawn. It (a new sample) came back normal the next day. So they messed up in transit w/ the old.

       

      AS you know, they took from both arms many a time when they just couldn't get anymore from one vein, :P so I looked like I was a crack addict w/ the marks and bruises. lol~

       

      But ya, most of the Rheumy's I went to see said sero-negative usually takes a milder route. I know they throw in usually.

       

      And since she is battling it for 20 yrs...I assume, she is dealing w/ loads of pain etc now.

       

       

      I know 2 of my Rheumys said that sero-neg usually will show less joint erosion and deformities than people who test pos. for it, and they "usually" don't get the nodules like pos. RA does.

       

      But you know I think they throw in "usually" to cover themselves...but they also said to me there is scientific evidence to back that up when I ask if they are blowing wind up my skirt.Laughing

       

      I'm sorry, I think the progress is the same as well as symptoms for both like you said. My bad. Just joint erosion and deformities seem to be less severe in sero neg the drs said.

       

      But w/ me...I have no visible swelling, and most Rheumys I have seen said that "whatever it turns out be" ie. IA/RA...they caught it so early, no pain for a yr, then it comes back at a 2 out of 0-10... that with minocycline they think they can stop the progression completely, but I need the MRI first before they are convinced--as for some reason they are NOT convinced w/ the xrays showing 2 erosions. 

      They did tell me that most people are NOT that lucky. But because I am on their butts all the time for answers... ;) (it's the OCD anal aspect in me) they have been checking everything that they can possibly think of for a year-by blood, x-rays, and now the MRI of the hand and wrist.

       

      What aggravates me is that 3 of those 4 Rheumys said not to worry, that it's fixable and not serious.

       

      But IA or RA (sero or pos) are all auto-immune and from what I read they are serious...so how can you say not to worry. My husband seems to think because I have little to no pain in yr 1, and no visible swelling yet as these drs see it...that they believe they got this "thing" early enough. Every dr has told me I should be able to live a "normal" life w/ no restrictions if I take a DMARD only of my choosing and just bypass the NSAID if I don't need it because it's not going to help my IBS. Which I choose minocycline if that's what ends up happening.

      I also have an appt tomorrow w/ the Neuro-Muscular Skeletal dr who will be doing lab tests to check chemicals in my blood and urine, a stool sample...which I am NOT looking fwd to, I'll tell you that right nowSurprised, because sometimes she says leaky guts can cause AI diseases, she's checking liver enzymes, enzymes in the pancreas, joint fluid (another thing I'm not looking fwd to-- for viral/bacterial issues) and allergins, hormones etc. Also too much yeast in me? She will then send that stuff over to my GP and Rheumy. Fun fun.

       

      This additional specialist said that usually she finds anyone that has an auto-immune disease, has issues that have been going on for years..and that is usually where the AI disease will come from.

      I have IBS, which is now inflammatory, I have diverticulosis, I have kidney stones,

      & w/in a years time, I developed a LOT of uterine fibroids, polyps, and ovarian cysts. I get chronic UTI's for no reason they can see, I get chronic sinus infections for years...

      she said this was all POINTING to something wrong back then. If you can't figure out why it's happening, you are opening yourself up to an AI disease...so I still kinda blame the drs for not seeing this was a problem a few years ago. ;) The GP just sends me to a specialist...ie. ENT, Gi specialist, and urologist, and obviously the OB-GYN. No one knows why I got these all starting a few yrs ago...well the IBS was in my early 20s.

      It's just kind of weird when you look at the whole picture as to things you have had wrong w/ you..and then BAM you get an AI disease. Something in the body isn't right.

      I'm on a mission to find out why my body hates itself. LMAO. Smile

       

      Ronnie, have you ever heard of erosive OA? Sounds to me like that would be like a RA (inflammatory in nature)...as that was thrown out to. Confusing why they call it OA though.

      READ MORE
    • Jackie
      June 23, 2010
      Jackie
      June 23, 2010

      Not to be rude dec2004, but I didn't ask for a description of my disease. My multiple doctors and research have told me what seronegative means. You should not be defining people's illnesses when you don't have a medical degree, and you are not correct. All I was asking for was people who are taking Methotrexate, or who have in past to let me know of their side effects and experiences. I am sure you are just trying to help, but you can do more damage than good if you are giving out medical advice and defining people's diseases to be other than what have been diagnosed.

      READ MORE
    • eastcoastgirl
      June 23, 2010
      eastcoastgirl
      June 23, 2010
      I'm just telling you what my drs have told me. And I have seen a range of 4 Rheumatologists, 1 orthopedic surgeon, my GP, an urgent care dr, and 4 internists that practice w/ my Rheumy. I have been misdiagnosed a few times, so I know MEDICINE and a DOCTOR aren't even correct. And I never ONCE said I know anything about a disease. There is also a disclaimer on here that no one said they are doctors. I said what MY OWN DRS who have an medical degree have told me. SORRY that offends you. Yours tell you one thing, mine tell me other information. You are very rude, regardless of your pain or not. This site is useless. It's just people putting down other people. I can do w/o it. I already have enough stress, I sure and heck don't need someone else who thinks they know it all too because of what their dr says telling me what my own drs have told ME sero RA means as well is wrong. Unbelieveable. READ MORE
    • Daphnee
      June 24, 2010
      Daphnee
      June 24, 2010

      hi roni,

       

      i am in tx too.  i have applied for disability about 45 days ago.  man, these diseases really rob us of alot.  have any advice or avenues about getting help in tx?  

      READ MORE
  • eastcoastgirl June 22, 2010
    eastcoastgirl
    June 22, 2010

    Also: If you gained weight and it's not listed as a side effect (I don't know for I am not on it, and wouldn't take it even if the dr wanted me to due to other side effects I have read)

     

    ...it might just be the fact that you are eating less and because the meds are making you more tired and weak...you're probably not doing much in as far as excercise. Those 2 things combined WILL slow your metabolism down big time. Trust me, I am recovering from an eating disorder...so I purposely did not eat...(maybe one small salad at dinner) so, when I saw I started packing on the lbs all of a sudden and stopped working out as much...I was referred to a dietician in the hospital that made me eat 5-6 small meals...and when I say small..it's like snacking/grazing all throughout the day on good stuff like, veggies, fruits, yogurt, whole grains etc. AND loads of water which I hate, but I force myself to drink a lot. I actually lost all the weight I put on by eating more small meals..and that just showed me it was my metabolism slowing down big time. (they had tested me for hormonal and thyroid issues before they sent me to a dietician).

     

    All I can say is that hopefully your state can help you out w/ the food and meds. Keeping a healthy diet is essential.

     

    I'm kicking myself in the butt now...because if I wasn't so worried about my weight...I wouldn't have put my body in the position to have my immune system compromised as much as I did. 

     

    So eat --and see if you can get help from your state w/ that ...and the meds.

    I know minocycline is used for RA and that's a cheap antibiotic that you probably would be able to afford.

    You'd need about 200 mgs a day and it's cheap when you have no insurance as well.

    Here's to hoping things get better for you Jackie. :)

    READ MORE
  • Empress678 June 24, 2010
    Empress678
    June 22, 2010

    I got better after stopping metrotrexate.  Pain went away.  Began to lose weight I had gained.

    READ MORE
  • trevor June 26, 2010
    trevor
    June 22, 2010

    hi if u stop taking the tablets the Rheumatoid Arthritis will hit you more every where in your body that lets say in 5 years u cant do anything at all as its hit your bones more and you will feel the pain more, but taking the tablets slow that down to stop you getting that so quick, as im the same as you so your not on your own i hope this helps you, take care

    READ MORE
    • Annette
      July 24, 2010
      Annette
      July 24, 2010

      Hi there trevor

       

      I so badly wanted to stop the meds but hubby not happy cause he believes it will progress much faster. The problem that im having is i battle to breath, its like i breath through my stomache and not my chest that my diagphram hurts eventually from wrong breathing. I feel i have a constant weight on my diaphram and it makes me so tired. i started getting pins and needles in my feet and my hands from hyper ventilating trying to get air. Do you or anyone out there have the same problem and what works best to relieve the constant battle. Im on Methotrexate.

       

      Thank You

      Annette

      READ MORE
  • DebbieM123 June 25, 2010
    DebbieM123
    June 22, 2010

    Ra can make you tired and weak all by itself. That's the reality of it. If you feel more tired and weak, your best bet is to call a doctor who may tell you he doesn't want you to start back on mtx when you actually do have the available funds.

     

    If you are on Prednisone there are cases that when mixed with mtx it can cause unusual weakness and fatigue. Again tell your doctor! That steroid as you know can increase weight. I'm not sure if you are on that in conjunction or were because you never said so. Along with the fact that if everyday activities are very hard for you to do now, and I have been there, then you might have a slower metabolism now as well. Again the reality of the disease and life. 

     

    I'm not sure what your money situation is like; except that you say you are struggling. But I too live in BC Canada and was out of work for a while and there are places that will help. So Canada versus United States is not the issue jackie. In fact it is known many people from the US get their meds cheaper from us. I have a bunch of links if you were to need them.

     

    I did go off mtx for a while, and it didn't cause any issues.

     

    Also, I was reading all of this posting all 24 or so of them and I have to say that a few people were right when they said sero-negative Ra is just Ra without the Ra titer changing. I have had this since I was 14. I have Ra which means my titer is high and I also have inflammation around my lungs. So you are no different than anyone on here except that your blood doesn't show it. If you don't believe me ask your own doctor. 

     

    There are links like I said. You just need to search them out and ask questions to doctors and pharmacies. If you want, private message me, if not since you wanted to delete your profile then I am assuming you got your answer.

     

    Another piece of information guys, don't be scared to actually call the drug companies that make the actual drug. Sometimes they will help you out as well. I'm not saying they always will, but you have to try. It worked for my mom who has Ra as well.

     

    READ MORE
  • ronie June 23, 2010
    ronie
    June 22, 2010

    Jackie,

    Thank you for sharing more of your background information, meds, medical history and concerns with me. I understand your situation completely.  I am currently going through that situation myself.

     

    I will find out more information on the list of programs we talked about and will get back with you.  I hope the information will transfer and benefit you.  If I need anymore history, I will contact you. 

     

    Thanks also for listening. 

    Ronie

    READ MORE
    • Gavin
      June 16, 2011
      Gavin
      June 16, 2011

         Has anyone on this site done any study on the relationship of low Boron levels and Arthritis?..The facts are suggesting that Israel with the highest Boron in their water has the lowest Arthritis per head of population, at 1%. and jamaica the lowest Boron with 20% plus per head of population.

         A second fact that seems to be missing from all the Arthritis threads is that sheep with the disease, seem to get better if given Boron supplements in a couple of weeks. A theraputic dose appears to be from 3mg to 9mg a day.The old time remedy was to lick your finger daily, and shove it into ordinary Borax (thats the cheap stuff from any supermarket) up to the first nuckle stir what was sticking into an 8 oz glass of water and then drink it. As this is no more toxic than salt theirs not a lot of risk.

       

      READ MORE
  • Hope June 22, 2010
    Hope
    June 22, 2010

    I went off of meth without tapering it down and had no side effects.  It took about three weeks before the exhaustion and weakness wore off.  It took six months before I had a huge flare and had to be put on arava.  But I feel so much better being off of it.  If your going off of it because of cost double check your cost it may be cheaper than some of the other drugs.  But do inform your dr that you are going to go off it  and how it is making you feel.  He can't force you to take a drug that you do not want to take.

    READ MORE
    • Jackie
      June 23, 2010
      Jackie
      June 23, 2010

      Thanks for the info on your experience. Makes me feel better. I was quite worried about the effects of going off suddenly. I will continue the drugs once i get some money, but i haven't worked in so long that i am struggling to pay bills and such. My doctor isn't forcing me to take the drugs, but he expressed a concern of going off them. I don't think doctors understand the meaning of financial trouble.

      READ MORE
    • Celeste
      June 24, 2010
      Celeste
      June 24, 2010

      No the doctors sure do not understand I have NO money... I had the same problem with my rhemy in AZ.  I have come off meth also no side effects but wait you will get a big flare.  However if you go to the maker of the drug they might assist you in the cost if not all of it. Humira paid for the entire bill when I tried that drug.  They shipped it directy to me.  So if you want to take it and dont have the ill side effects... go directy to the maker of the drug, if you dont  know who it is let me know and I will look it up for you. 

       

      good luck.....

      READ MORE
  • california-girl August 21, 2010
    california-girl
    June 22, 2010

    I've been taking Methotrexate since April '10 & I stopped for 2 weeks to see what side effects will it take.  Well I did notice the difference of not taking it and I was feeling very fatigue like before I started taking this medication. I had no energy, I would take naps and it would still feel extremely tired and It wasn't a good feeling @ all! I also find that my opinion been taking it since April of this year and it doesn't help the inflamation I have on my 10 fingers painful, swelling, but does help not feeling fatigue. I've mentioned to my RA Dr. and he doesn't seem to listen and advise me it takes a long time to process well.  Only the individual will know what works and not work right? Good Luck! I'm also tired of going to see RA Dr. every 4-6 weeks so I stretch it out to 12 weeks.  I only pay $5 also.

    READ MORE
    • suttonworks
      December 28, 2010
      suttonworks
      December 28, 2010

      Hello! I also joined this disucssion a little late! However, cam on the forum to see if anyone experienced an increase of symptoms or fatigue when stopping methoxreate. I stopped about a month or so ago (after weaning a little bit). I had been on it for about a year and a few months. I relate to california girl, as in how stopping so far has affected me. This week I have noticed extreme fatigue return, exactly in the manner it was before I began. Remember, I was on it for over a year. For me, eventually all of my joint pain (almost) went away. It was my miracle medication at first. However, the risks are something each of us need to weigh for ourselves. I stopped because I felt better and forgot how bad it was prior to the methotrexate. I lost weight on the medication, but I think that is because I had more energy and did not have as many flares. I can't take prednisone bc it make me a little delusional (which is never fun!). I find plaquinil to help with the pain, but methotrexate really makes a difference for me with the extreme fatigue where I could sleep all day if possible. I am planning to return to methotrexate if my doctor agrees. I have now felt the difference and remember! I can relate to wanting to try to come off of it..as it was only a few months ago. I believe it is worth a try if we decide to change up or come off of a med. We all need to be mindful of the changes, I suppose, as obviously everyone has a "best combination" which takes a while to figure out..sometimes too long!! By the way, I have mixed connective tissue disease, mostly with lupus and RA features. As you may know, MCTD has features of many of the autoimmune diseases or meets criteria for one or more. I beleive mine is more like Lupus than RA, however my RA titer (?) has been high...or low (haha..not sure which is significant). But doctors say I have many lupus features as well (butterfly rash and some other common lupus symptoms). Not sure if the diagnoses have anything to do with the medication when the symptoms are so similar...

      Best of luck to you all...

      Christine

      ps..I wish I lived in Canada!! :)

      READ MORE
  • Deana June 24, 2010
    Deana
    June 22, 2010

    1.  There are many assistance programs to help with your meds, including:

    Walmart = $4 Generic Prescriptions - I think Target also.

    2.  If you are disabled and on Medicare in some states you can also buy into Medicaid (I pay $18/month) and it pays the 20% Medicare won't pay and pretty much for everything Medicare won't pay.  I had to meet a $5000. deductible to buy in, but they will count all your OTC meds, Devices like lift chairs, walkers, etc. so meeting the deductible is not as hard as it sounds.  It took me about a year.  I pay either $2.00 or $6.25 for my meds until I hit the donut hole then nothing, but I also have the SS subsidy that helps.

    3.  Social Security can put you in for a subsidy to help with your prescriptions by calling or going to SS office and asking.

    4.  Each pharmaceutical company has plans to help people who cannot afford their meds - some are free depending on your circumstances.  Ask your pharmacist - this is no time to be shy.  OR look on the circular that comes with your meds to figure out who makes them and give them a call.

    5.  Some states have Transitional Assistance programs to help people who are in a bind - they actually give you money - not a lot, but it helps if you are in dire straights - go to the local Welfare Office and ask.  Also get yourself on foodstamps and SSI (help from Social Security) if you can to help.

    6.  Ask your doctor if she can get samples for you from the pharmaceutical rep that sells your drug to tide you over.

     

    I hope this helps.  I live in Massachusetts so I am not sure if the Medicaid/MassHealth thing works the same in your state, but all states have Medicaid.

     

    Deana

    READ MORE
    • ronie
      June 24, 2010
      ronie
      June 24, 2010

      Wow, Deana, Thank you for that information.  I didn't know half it.  I could use some of that assistance myself.

       

      I don't know whether Jackie will answer but I believe she lives in Cananda.  So maybe you can help me with some of the research to see if Cananda has some of the same programs you have listed.  Or send me a private msg on how i might find this info on the web.

       

      Thanks again.

      READ MORE
    • Jackie
      June 25, 2010
      Jackie
      June 25, 2010

      Thanks to everyone for their suggestions on the medications. I am in Canada, as Ronie said, so things are much different here. Usually there is alot of help in these situations, but my situation is just out of the box a bit. lol I have discussed my issue with my pharmacist, doctors, and some government agencies. Because I am on Employment Insurance right now, I am not eligible for disability (which will cover my drugs) until the EI runs out. I am not eligible for the medical benefit only because I made just over the amount they would allow to get the benefit. But, it will all be ok. I only have one and a half months until I will be able to go on the disability, so I just need to hold on till then. I will probably only have to be without the drugs for a few weeks. It may increase the pain, but from what everyone tells me here, there won't be other side effects, so I can handle that.

      READ MORE
  • Daveweb June 23, 2010
    Daveweb
    June 22, 2010

    ronie and jackie:

     

    just was sent this link to my work email account about what jackie's main concern was. and it was answered by people. so be it. 

    i see my wife just added something about nutrition as jackie said herself she can't afford to eat alot anymore in her own post because of lack of money and i believe also she offered a medicine that might help, or it might not, but it's cheap.

    ladies, she might not have the progression you have with her diseases right now, but she has probably had more blood tests and more x-rays, ct scans, and more mri's in one year than you all have had in 20 years. they have used her as a guinea pig as i have been with her to all the rheumatologists she sees.

    she was merely offering advice about food which all doctors have told her she needs the right food when battling any auto-immune disease, and then she additionally added later what her doctors have told her about sero-negative diseases. i see by looking on here she never claimed to say she was a doctor but what her doctors have told her. she has seen so many and i have been with her for each and every one.

    not sure you know this or not jackie, but doctors disagree as well and they do alot!!!!! just because they have a md, or do or anything after their names doesn't mean a thing.

    if you trust your doctors, good for you. she was merely adding in what she heard from quote unquote specialists that are in this field and practice in the quote unquote best hospitals in boston.

    if you know so well your own disease by now, then maybe you should have just called your doctor or the pharmacy you get your medications from and asked if there would be any ill side effects from going completely off of them. you can also google, since you seem to say you research everything about your disease, plans that help with medications in your area. but not once did my wife deserve to be attacked that she is giving wrong information and is misleading others. if you don't like what people share on here, call the actual doctors that are treating you, like you said, you know what you have, and ask them what you can do for yourself. there was no need to blast my wife. and honestly ronie, you didn't help matters either from what i can see. 

    i think my wife's numerous doctors were right. if she wants answers on anything she should seek their advice or that of a pharmacist not the boards that do nothing but berate someone trying to offer advice their own doctors told them.

     

     

    READ MORE
    • ronie
      June 23, 2010
      ronie
      June 23, 2010

      Mr Web,

      I apologize that you feel you have had to step in to mediate on a website that should need no mediation. It is an Outreach so that we do not have to feel alone while dealing with our diseases.

       

      No one on this site is a doctor.  We ask questions, share our experiences and provide each other with information that sometimes our own doctors and pharmacist do not give us because they only spend 5 minutes (if that) at a time with us. We are all capable of reading and googling obviously, but it is the sharing that this forum is about.  Relating to one another because, as you said in your own post, doctors disagree.

      However, miscommunication through a written forum happens quite often. 

       

      I am aware of Dina's medical situations as she speaks with me on a more private and person level through yahoo.  I would hope by now she would know my style of writing and sense of humor. However, Jackie is a first time visitor to this site and does not know how or where Dina gets her information.  Dina is well aware of how and where I get my information.  I can only see that a misunderstanding has popped up.  Rereading all the posts, the original request was to reach someone who could relate to stopping medications.  Finances was background information as to why, in order for us to know she was not stopping her medications willingly.

      I do see where Dina did go a bit off subject in her longer post.  However, it looked more like she was talking to me, as she often does, and maybe not actually talking to Jackie.  I also see that Jackie's comment started with "Don't mean to be rude," which generally means what I am going to say is going to sound rude but I don't mean it to be. 

       

      I am sorry, Dina felt as if she were "attacked."  Nothing I said to Dina was meant as an attack.  I know on this site many times I have actually been personally attacked, cussed out and insulted for providing information that was not what someone did particularly want to hear. 

      Again, I apologize to Dina.

      READ MORE
    • Daveweb
      June 23, 2010
      Daveweb
      June 23, 2010

      sorry ronie, my wife spoke of two people on here that she writes emails to so i apologize. and i do agree that an open forum will cause miscommunication.

      however, jackie was quite clear in calling dina out on everything.

      i have learned in life at 41 years of age, that when anyone prefaces anything with, "sorry if this offends you", or "don't take this the wrong way but" that it is always followed with a backhand slap in the face. so usually i'll just tell people like i see it; without prefacing anything with those phrases because it's lame to add that to anything negative that is always followed by it; which is what jackie did. like i said, i looked at the posts she was talking about because she spoke of this site a lot. and i personally think she should just stick with people that know the diseases (specialists, physical therapists, chiropractor, dieticians and now a functional medicine doctor), and leave her personal experiences out of it because there's always going to be someone like jackie on any forum telling her off. but i'm just a man, and that's my personal opinion. if someone tells me I have something, i keep it in and deal on my own. you ladies like to vent and talk about your issues.

      but like i said earlier, my wife never once said she was a doctor. and this site, as my wife said, shows the disclaimer at the bottom. how jackie can get that impression, when dina said, "well this is what my doctors have said to me", is ludicrous. either jackie is not reading the posts correctly, or thinks she is the one that knows everything because of her own "research" and her doctors, she shouldn't blast my wife in regards to what her doctors say as well. as i have said any doctor will give you a multitude of answers, many different. but jackie seems to have doctors she trusts for 20 years, so it shouldn't be a problem to call them up and ask a simple question about medications. i think jackie answered her own question anyway before coming on here because she said her doctors weren't happy about it, but she has no choice for now.

      i agree ronie that many drs give you the 5 mins. dina has seen a few. the most recent ones that agree on a diagnosis give her over an hour each time. you are waiting forever, but you know you are given the same amount of time. and that's just a matter of researching doctors to see what other patients say about them. as far as the meth and stopping it quickly, i'll have to politely disagree with you on pharmacies. around here you can call any local cvs, rite-aid and not even fill stuff with them and a pharmacist will get on line and answer questions that many times the doctors leave out.

      my point, if jackie is so quick to knock others without knowing their history and she states she knows what she has for over 20 years, i would think the last thing you'd do in wanting to know what stopping a strong medicine would do is to come to a site that is just people sharing experiences. none of you are doctors like you said. so if you want real valid information call a doctor you are seeing for 20 years or so, or talk to a pharmacist that goes to school for 10 years to learn about all medicinces before blasting someone, all a while saying she is "trying not to sound rude."

      i can see why some people wouldn't come back to a place like this. if she had an issue with my wife, there's a private message option, she could have utilized it.

      but since she believes belittling her on here is a good route, i chose not to even bother using the private message button for her.

      and before anyone can say well she is new. so was my wife as of a week or so ago, and so am i. but i famaliarize myself with a site before i go belittling people for no reason. i mean if you look at her answer to my wife, logically in your head you'd think when she says she knows what disease she has for over 20 years now, and she obviously knows the medicines that work, that calling those doctors that told her she has that disease, or calling a pharmacy that knows about medicines, as that's all they do, would be your first source of knowledge. but i guess that's just me.

       

       

       

       

       

      READ MORE
    • Jackie
      June 23, 2010
      Jackie
      June 23, 2010

      I do appologize for offending anyone here. It really was not my intentions. I guess I took offense to something that was said about my disease, and I am scared and in pain so i said the first thing that came to me when I read the comment about seronegative meaning my arthritis was mild. I should not have responded to the message at all, and especially not the way I did. So again I am sorry and could we please let this go. It was not meant to hurt anyone, only was asking for my situation not to be judged...as I felt it was. If that was not the case I am sorry for misunderstanding. I was only asking for peoples experience taking methotrexate and did not expect all of this extra attacks. I am sorry more than you know that I said a word.

      READ MORE
  • mel
    mel
    August 08, 2011
    mel
    mel
    June 22, 2010

    I was having trouble choosing between paying bills or paying for meds... until I found help paying for my med.s! I logged onto Humira help and called the # 1-800-humira and signed up- now I only pay $5.00 a month instead of $100.00. Then I found a site for cymbalta that gave me help and 30 free samples! I also take metho and I am currently looking for help with that 2! If I come across any I will be sure to let u know! Wishing you well!

    READ MORE
    • Gavin
      August 13, 2011
      Gavin
      August 13, 2011

          I   hope all those with RA.are up with the play with regards Boron. If money for meds is a problem the old time rule of thumb is lick your index finger..shove it in a packet of 20 mule team borax..what sticks is swirled around in an eight ounce glass of water and this is drunk everday. This gives about 9 mgm of boron which is the theraputic dose.  Remember if your not getting enough Boron your probably not getting enough of the other essential minerals.So a supplements would be advised.

        It might be worth adding that animals with RA were given dmso which cleared the condition in a couple of weeks..The human version is called MSM..its an essential part of the food cycle which is missing in modern food preparation.Just dont take it at the same time you take Gluchosamine and Chondritin as it will give you a headach.Otherwise you can take large amounts of msn, its safe in all quantities as the body flushes what it dosnt need. it enables uptake of essential vitamins and minerals.

       

      READ MORE
  • mel
    mel
    August 08, 2011
    mel
    mel
    June 22, 2010

    I was having trouble choosing between paying bills or paying for meds... until I found help paying for my med.s! I logged onto Humira help and called the # 1-800-humira and signed up- now I only pay $5.00 a month instead of $100.00. Then I found a site for cymbalta that gave me help and 30 free samples! I also take metho and I am currently looking for help with that 2! If I come across any I will be sure to let u know! Wishing you well!

    READ MORE
  • Millie March 23, 2011
    Millie
    June 22, 2010

    March 23, 2011

    Well, I am really late to this forum.  Thank you to all who have shared their experiences generously.  I had a similar question when I just came to this site.

    You have helped me decide my next move.

    Whenever I have had surgery (for JRA related problems, JRA for 58 years), the order has been, "Do not take methotrexate the week before, the week of, and the week after surgery."  So, if I can withdraw for three weeks, then----?  Have been on methotrexate (15-20 mg per week for 22 years).  For the last six weeks, I have been taking it every two weeks.  After reading others' comments, I am encouraged to complete withdrawal.  Thank you all so much!

    Millie

    READ MORE
You should know Answers to your question are meant to provide general health information but should not replace medical advice you receive from a doctor. No answers should be viewed as a diagnosis or recommended treatment for a condition. Content posted by community members does not necessarily reflect the views of Remedy Health Media, which also reserves the right to remove material deemed inappropriate.