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This might be a stupid question, but.......

Posted , 7 users are following.

constance.de
constance.de

As far as I know, Methotrexate, Sulfasalazine, Planquenil are all medicines that 'help' to relieve RA in one way or another.  But surely, they only reduce the pain?!!  The silly question - what happens if you just put up with the pain?  Do you just seize up?

I'm new to RA.  I am, however, 76 - and am 'afraid' of taking any more medicines (I am taking Prednisone for  PMR at the moment).

Looking forward to your comments.

C.

0 likes, 26 replies

26 Replies

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  • lodgerUK_NE
    lodgerUK_NE constance.de

    Posted

    Methotextrate is the gold standard treatment for RA.  However it is also used with PMR, partlcularly if the RA is what is called Late Onset RA and then the metho really helps.

    Talk to your medics and get them to explain it all to you - you should have a contact number for a Rheumatology Nurse and also a Methotextrate Nurse contact details.  Don't be afraid discuss it with those who can allay your fears.

    • constance.de
      constance.de lodgerUK_NE

      Posted

      Hi Lodger!  No chance of a Rheumy/Metho nurse over here (Germany) and its my rheumatologist who is trying to put me onto Metho or Sulfasalazine, he's a 'get off pred asap' man.  But I can't see that the above mentioned medicines won't harm you just as much as pred does.

      However, I really must think carefully.  C2Anna has pointed out what CAN happen if I just ignore them.  Drat!!!

  • C2Anna
    C2Anna constance.de

    Posted

    Hi, RA is a systemic connective tissue disease, and serious auto immune disease, which means it is not just the many joints and tendons this is about, but the many organs in the body such as the heart and lungs, that are hugely effected by what could be fatal inflammation taken over by systemic fungal, bacterial, or viral infections. If you were to stop the medications, inflammation takes over, as a cancer does, and the disease takes over systemically, which can lead to very serious all over body sickness, and very swollen lymph nodes, from massive infection or cancer itself. Infections such as these with a greatly compromised immune system from the RA, spread quickly and profusely, and is very dangerous for those with auto immune diseases. Please talk to a specialist who can explain this and the importance of RA treatment!
  • slm222
    slm222 constance.de

    Posted

    Hi Constance, it all depends on what your diagnosis stage is as well. You say you're 76; is the RA new or is this a late diagnosis? Do you have joint deformation? Have you had xrays? Methotrexate (MTX) is a DMARD drug which means Disease-modifying antirheumatic drug. They have many of them, but MTX is prescribed the most. I personally don't care for it as it makes my symptoms worse. But you should definitely find either a DMARD or bilogic that will curtail your inflammation. Prednisone is OK in small doses for a short time, but the long term effects for long term use are horrible, so please be careful with prednisone. I won't touch the stuff. 

    Make sure to get more info from your doctors. They should be able to explain everything to you about this disease and about your diagnosis of it.

    • lodgerUK_NE
      lodgerUK_NE slm222

      Posted

      ', so please be careful with prednisone. I won't touch the stuff'. 

      You would if you had GCA and it was that or loss of vision.

      Pred is a most powerful drug, but because it has been around a  long time all its side effects are known.

      Many Children and Adults would not be living without this drug and they take it for life.

    • EileenH
      EileenH slm222

      Posted

      Sorry to but in to the conversation - but Constance isn't on pred for her RA - she is on it because she has PMR. DMARDs don't work to change the disease process in PMR - the only thing they can do in PMR is to allow the same result to be achieved with a lower dose of pred and even that is disputed. She does have RA as well though - hence the question.

      Used properly in PMR it isn't a horrible drug - it gives us our lives back and nothing else does. PMR in many ways is like RA without the joint damage - but it can be just as painful and disabling without any treatment. 

    • constance.de
      constance.de EileenH

      Posted

      Meant to add - I only have RA in hands and ankles at the moment. (Not sure whether hips are now PMR or RA)!!  Time will tell!

      I'm delighted I'm down to 5mgs pred - long may it last!

    • EileenH
      EileenH constance.de

      Posted

      Me? For PMR? Probably not - but I have got the PMR and the pred under control. Used properly I don't believe that most people need anything else to manage PMR. But it is how it is used that is important. 

      Having RA is a different kettle of fish altogether - but I'd also want another opinion and proof that it was RA and that it was causing damage. It doesn't always do so in LORA.

    • EileenH
      EileenH

      Posted

      Oh - I forgot to say that most doctors would accept 5mg as a very low dose that could be continued over long periods. I'm at 5mg, my doctors are perfectly happy. So am I.
    • slm222
      slm222 lodgerUK_NE

      Posted

      I have no idea what PMR or GCA are. All I know is I have had many friends who have taken Prednisone for many different issues and years later, they're still dealing with the effects from it. I'm sure many people get along fine with it. I was just stating my own fears of it due to the horrible effects my friends have had that I have witnessed. And there's a long list of them (both friends and side effects). I wasn't trying to tell anyone to not take it. If that's what it sounded like; my apologies.
    • EileenH
      EileenH slm222

      Posted

      PMR (polymyalgia rheumatica) and GCA (giant cell arteritis) are related forms of a vasculitis (inflammed blood vessels). PMR causes rheumatic symptoms and can progress to GCA, GCA can lead to irreversible blindness if untreated - and the only management option at present for both is pred.

      Whatever the unpleasant side effects there are few as bad as loss of vision. My granddaughter is on high dose pred for severe brittle asthma - without it she would be dead because she doesn't respond well in a crisis to the other drugs. The pred reduces the incidence of attacks.

      Pred used unwisely can be bad, I won't deny that, and is often unpleasant but there are instances where pred is a lifesaver and, in our case, prevents disasterous longer term effects of our illness. Believe me, we wouldn't be taking it if there were a better alternative! We do have great problems though with patients on forums and who come to support groups who are terrified of taking pred because of the stories they hear. We are often in the position of explaining the whole story - not just to patients but also to doctors who are also scared of big bad pred which leads to them trying to force reductions of dose in patients who are not able to reduce, either because it is too soon or because they need just a low dose to maintain their relatively good health. There are two sides to every story - pred too.

    • Light
      Light EileenH

      Posted

      Thanks Eileen!

      Once again you bring the right balance to the terrible rumours about preds that bounce around our auto immune universe.

      I am a 10-year sufferer from RA who has managed a normal life (albeit often with much pain) thanks to prednisolone used wisely under the guidance of a terrific rheumatologist. And I'm now down to 2.5mg.

    • constance.de
      constance.de Light

      Posted

      Hallo Light (what a wonderful nickname)!  I am new to RA, thank goodness, and would just like to know what tablets you use for pain?  Also, do you use any of the medicines that are listed at the beginning of this post?

      Greetings from Constance. 💐

    • Light
      Light constance.de

      Posted

      First diagnosed 2006.

      Have been mainly on prednisolone, methotrexate, sulfalazine.

      Also Arava.

      Doses have varied widely depoending on how severe the symptoms.

      A number of different painkillers but mainky paracetomol.

      Was on the biologics Actemra and Rituximab.

    • slm222
      slm222 EileenH

      Posted

      Thank you Eileen, for clarifying what these illnesses are and how they are treated. I wasn't trying to start an argument about Prednisone; I just have several friends that are dealing with life time side effects from taking it. Obviously, if it's all there is to treat something, then you take it and deal with the side effects; and I'm sure there are some people that don't have any from taking it. Sounds awful and I wish anyone who has any of these only the best. As a sufferer of RA, I know how it changes your life. <3 >
    • EileenH
      EileenH slm222

      Posted

      Didn't imagine for a moment you were - i was just explaining. People have heard of RA (sometimes) but rarely of PMR and GCA!
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