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Off meds

Posted , 6 users are following.

vickiann49
vickiann49

So I was put methotrexate...and I got really sick so went off of it. I never did go back on it and never followed up with my RA doc..I hurt all the time..But what happens if I just don't take any meds .. And exercise watch what I eat. What will happen?

0 likes, 9 replies

9 Replies

  • lyn1951
    lyn1951 vickiann49

    Posted

    The reason we take modern medicine for RA is the mal formation and destruction of our joints, my grandmothers hands by the time she was 60 were just claws, her fingers had turned so much she could barely grip at all.

    You do need to work with your rheumo specialist to find the right drug that helps, my rheumo has been very frustrated with me over the years as I am allergic or have really bad side effects of many different drugs.

    I have been on MTX, started to dis-agree with me after taking it for close to ten years without apparent side effects, have had to come off the last few months, but am still taking leflunomide at the lowest dose and that is holding me stable, fingers crossed.

    I have had a double hip replacement as my hip joints have given up a mix of RA and osteo arthritis or so I am told, I got to the point of being unable to walk, confined to my home, couldn't even do my own shopping towards the end, and i am now looking at a possible knee replacement as well, left knee is causing me alot of problems, stiffness and pain if I try to stand for more than about 20 mins.

    • vickiann49
      vickiann49 lyn1951

      Posted

      I understand my pain is so bad I have to force my self just to get up. Thinking of just a shower I dread. My work I went to grave shift to be easier on my body..my RA doc is 72 miles away I live ck to ck and a sh*tty rig to drive so I just quit going.. Seem harder to find a way there and money just hard...The more I move the better it gets but its very painful and I seem to get flare ups lately..no one gets it my oldest son thinks a!ll I need to do is work out and eat right.. He thinks I am making it up I guess..I know that if I have to feel !ike this every day I don't think I can do it..people think Arthritis is like older people get and its norm they don't get it and tired of trying to convince them other wise..just sucks thanks

  • lynn15111
    lynn15111 vickiann49

    Posted

    I understand because I couldn't tolerate MTX, but I still took sulfasalazine for years and that was all I had.  At the time there wasn't anything else.  When it was available I got on a biological around the year 2000.  You should try to do the same.  For years I felt very good, although the damage already done did limit what I could do.   The idea is to get on biologicals as soon as possible so less damage is done.

    • vickiann49
      vickiann49 lynn15111

      Posted

      What is a biological? So if I don't tame meds I will end up crippled? Thank you

    • lynn15111
      lynn15111 vickiann49

      Posted

      Only you can tell us how it is affected you now.  and yet you don'tknow what it might do in the future.  I lost an aunt to it and she was 56, before the time of certain meds.  It took her life within 8 years and attacked more than her joints which it can do in some cases.  I had it effect my heart like she did.  Biologicals are cultured meds that filter out certain parts of your blood immune system that attack the joints.  They don'tknow yet how to correct your immune from attacking your own tissue, so this is the best there is.  I've been on two TNF meds, Enbrel and Humira, and now on one called Orencia.  You can google them for more info.  They are expensive so you need insurance coverage.  RA can be relentless and do alot of damage so it best to keep in touch with your doctor.  I did many special diets and being a vegetarian does help with flare ups.  You can google an RA diet because there are food triggers.  Food you eat can make you hurt more.  <especially sugar>  

  • treezsh
    treezsh vickiann49

    Posted

    Hi vickiann, i have an idea of where your coming from sadly. I worked as a physiotherapist and saw very many joint destructions in rheumatoid joints over the years. When I was diagnised I was totally devastated and really felt my body had let me down. I was inclined to just see how bad it got! Wrong, even with the best diet and lots of alternative treatment I still continued to progress with this awful disease orocess. Until I found bbiological (and importantly the RIGHT biological) I was really struggling to cope. You dont say where you live, butwe are all aware that some centres are better than others. I would urge you to ask you Rheumatologist about biological drugs, they are produced from tissue culture from cells that are trained to recognise and produce antibodies against specific diseases. They arent in other words made in the same way as say methotrexate or sulph/leflu. Hope that makes sense. I so hope you can get the right drug for you, in the meantime, diet exercise (pacing yoursel to avoid fatigue) would all be absolutely vital. Dont lose heart, there is a way out, there was for meand I feel sure there will for you too.

    • shirlee86000
      shirlee86000 treezsh

      Posted

      Hi treezsh

      I am on my second try of methotrexate as from today as I was on it about 6 weeks before and had to come off it as enzymes in my liver were raised, my pain came back much much worse than before so a couple of weeks ago I got my second steroid injection and thank goodness it's keeping the pain away, my point here is I would love to try biologics my rheumatologist told me they also have side effects but I guess all drugs do, the criteria for going on them is trying methotrexate twice then if that's no good you get changed to another and if no good then they try you on biologics, I was only diagnosed 6 months ago and to be honest the pain was horrific before the steroid injection and it reminded me of why I am on methotrexate as that in itself scares the hell out of me with the side effects it can give, but this time I have decided to stop whinging and get on with it, I even asked my rheumatologist if he would go on mtx if he had it and he says without a doubt as it gives you quality of life, he's right without anything the pain is life changing I think. So I will just plod on and hopefully eventually they will get my rheumatoid under some kind of control

  • Emily1234
    Emily1234 vickiann49

    Posted

    Hi there how bad do you feel? Where is your pain? What are your blood test results your CRP and do you have the RF test ? I'd you feel really poorly I don't think no meds are the way forward however if you can cope without go for it diet is key gluten free no sugar coffee x

  • timothy11402
    timothy11402 vickiann49

    Posted

    You really, really need to go back to your rheumatologist. This disease can really deform your joints, not to mention attacking your lungs and other organs if left unchecked. I had a friend who ignored his symptoms until his hands were so crippled they were useless. He went to the same rheumatologist practice that I go to and they told him they could have PREVENTED all that damage. They started me right away when I was diagnosed on plaquenil and mtx and I am grateful to them for controlling my disease. Please do not put it off. Best of luck to you.
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