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RA and PRED

Posted , 10 users are following.

constance.de
constance.de

Do those of you who take Prednisolone for PMR/GCA, or for anything else for that matter, and have RA, know what maintenance dose of pred one should take?  Also, does anyone just take pred alone for RA?

 

0 likes, 24 replies

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  • C2Anna
    C2Anna constance.de

    Posted

    My maintenance dise is 5 mg daily..althiugh not everyone is given a maintenance diose. Because prednisone is not advised for long term, it is typically adoctirs goal to get you off from this, or at least to get yiu at an extremely low maintenance dose. An anti inflammatiry medication is critical in treating and maintaining RA. No it is nit at all advisable, medically sound or ethical to treat RA only with prednusone.
    • constance.de
      constance.de C2Anna

      Posted

      I know most people don't like to take Prednisolone over long periods (this has been discussed on this site before!) but I HAVE to take Pred for PMR (have now been taking it for over 3 1/2 years, now down to 7 mg again - I recently had a flare).

      My question was really a query about other things rather than DMARDS - not well expressed, I agree!  I've tried two - MTX and Sulfasalazine.  Neither agreed with me as I have stomach and esophagus problems.  I fear most DMARDS would be the same.

       

    • C2Anna
      C2Anna constance.de

      Posted

      yes I was answering your questions about prednisone use and elaborated on yoyr questuon about whether anyone has ever only used prednisine as treatment.
  • dancingG
    dancingG constance.de

    Posted

    Hi 

    I have never been on Predinisone, so I don't have any informaiton. But you mentioned soemthing about MTX and esophagus problems. Did you develop esophagus problems becuse of MTX?

    • constance.de
      constance.de dancingG

      Posted

      No!  I had stomach ulcers some years ago which I presume were responsible for the esophagus troubles later on.

      As for MTX I have a phobia about it so am the last person who can answer your question.

      Have a good day.  Regards from C.💐

  • Rowbirdie
    Rowbirdie constance.de

    Posted

    Hi Constance

    i only have RA but on 5 mg pred currently while waiting for other meds to work. I understand it's a low dose.

    Another DMARD is hydroxychloroquine. Has that been suggested to you to hold back joint deterioration from RA? I would think it s important to find a DMARD you can take otherwise the disease will simply progress.

    hope you find an answer for your own situation.

    • constance.de
      constance.de Rowbirdie

      Posted

      Thanks Rowbirdie

      In the meantime I have found out that it is NOT RA but OA.  My Rheumy isn't much good I am afraid.  I have had the results of blood and x-rays and 'only' have - active OA, Gout, and of all things Migratory Arthritis (a weird type of arthritis that hits different parts of the body for a few VERY painful days, then disappears - only to start up in another part of the body at some later date).😡

      Apart from all that I still have active PMR so am stuck on pred for some time I fear (at the moment 6 1/2 mg - after nearly 4 years!)

      However, I am relieved it isn't RA, i.e. bones, so I won't need DMARDS.  I have tried two - MTX and Sulfasalazine - both made me sick and dizzy.

      Have a pain free weekend.  Keep smiling😄.

      Regards from Constance.

    • Rowbirdie
      Rowbirdie constance.de

      Posted

      That s great it s not RA..... Thanks for letting me know! But sorry you still have lots of pains . 

      I ve had a good week and trying to build more exercise into my week.

      Regards

    • mitalia37573
      mitalia37573 Rowbirdie

      Posted

      I suffer from RA due to MRSA.  i have been on many different meds and on my fifth biological to halt the RA.  All these meds are bandages because nothing has halt the progression of my RA.  My right hand has slowly become deformed and now after five years on all kinds of meds the left hand have signs of deformity, swelling, and pain. Lufadomide made my hair fall in clumps,  methotraxate made me nauseated and weak all the time, hydroxychloroquine gave me two eye strokes, sulfasazine gave me ulcers.  And just recently, 6 days ago i was release from the hospital from contracting Severe Sepsis.  Its been a down spiral for the past 5 years. I have been o everything just about and the disease continues to progress.  im in pain 24/7.  On a good day, my meds will work for several hours and thats not often.  I pray your RA will subside and the meds work for you.  Our bodies have different makeup, so what may not work for me may for for someone else and vise-versa.  Just got to keep plugging along.
  • grannyD
    grannyD constance.de

    Posted

    Hi, I have had PMR/ now RA and I was on Prednisone for 2 years for the PMR During that time I tried to reduce but hit the wall at 5mg. This is a warning to everyone on long term prednisone, it is hell to get off it!! You get bounce back so you think you still have the disease. My PMR had gone but when I reduced my prednisone by 1 mg a month I got very sore legs and arms, very fatigued. I was determined to get this drug out of my body, my Dr and Rheumy tried to persuade me to stay on 2 mg for the rest of my life but I had the bullet between the teeth, now on methotrexate which is a prednisone spacer and supposed to help you with the reducing dose of prednisone it was still a nightmare. I ended up reducing by 1/2 mg per month.

    it took 4 months after my last dose to feel well again. Now I just take Methotrexate for the RA with the occasional paracetamol for flares of pain.

    hope my journey of hell to get off prednisone helps. I found very little information out there so at times I was sure that the pain was RA, but it was prednisone bounce back! You have to go very slowly and carefully under Dr supervision, it is sometimes impossible to start your adrenal gland back up again after prednisone use ( both high doses and long term low doses) so please be careful with this drug. It is a wonderful for taking away inflammation and pain, but you pay later.

    • constance.de
      constance.de grannyD

      Posted

      Thanks for your comments, Granny.  (which is probably a laugh, because you might not be any older than me - 76)!!

      I do realize that Pred is addictive, I have had PMR for 4 years (very a-typical - ESR 132 and CPR 100+ when I started).  It 's been a long journey.  Luckily, one year ago, I found this forum and it has helped me to understand and deal with this pesky illness.

      I too had a flare at 5 mg - a lot of us do - and had to go up to 10 mg for a couple of weeks. Now down to 6 again and, on doctor's orders, must reduce by only half a mg per month from now on.  

      I can't take DMARDS.  I have tried two, MTX and Sulfasalazine, and was allergic to both.

      It appears now, as title suggests, I haven't RA but OA, Gout and Migratory Arthritis.  I cope by taking Pred and pain killers (only 2, max 3) per day.  If I have to take these for the rest of my life - so be it!

      One thing I have learnt very recently is to stop worrying and take life as it comes.  There are soooooo many people worse off than me.  Life's too short - I intend to enjoy whatever is left of it.

      Kindest regards from Constance.💐

    • EileenH
      EileenH grannyD

      Posted

      This to both of you, Granny and Constance too (although I know that you know most of this post already).

      ​

      Can I just say: pred is NOT ADDICTIVE. Your body may become dependent on it but that is a very different matter. 

      Granny (and anyone else of course): If you follow this link

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      and go to the replies part of the thread you will find a description of a very slow reduction plan for pred - slow in the sense that each step is small and smoothed over several weeks.

      This has been worked out to reduce the steroid withdrawal problems you describe and is about to be evaluated in a clinical study in the form of vasculitis that Constance and I have which leads to symptoms off arthrtitis/rheumatism and for which long term pred is the only option for management. Nothing else works as effectively and if we go on to develop giant cell arteritis only pred is the sure way of avoiding loss of vision if it affects the blood supply to the optic nerve. No side effect of pred is as bad as that. So - we are on long term pred, the main option is stop the pred and end up immobile and in great pain, just like RA except there is no joint damage so the DMARDs aren't necessary.

      There is little evidence that using methotrexate works reliably to reduce pred dose - in some people it changes the way your body processes pred and you get a better effect for the same dose. As you are finding it doesn't really help the steroid withdrawal problem, especially if you are trying to reduce by 1mg at a time at such low doses - 33%, 50% reductions. The recommendations for less uncomfortable reductions is not more than 10% at a time. At these low doses that is obviously very difficult since by cutting the tablets you can get 1/2mg (in the UK at least). By using this reduction plan you have one day at a time and then you are back to the old dose you were comfortable at for a few days - by the 3rd or 4th day your body is getting used to what you are doing and the steroid withdrawal problem gets less.

      If I were told I needed to stick at 2mg for life I'd be ecstatic and take it and run! Not all the problems are to do with inflammation - as you say, some are to do with the adrenal glands not being back to full production - and the way to deal with that is a low dose of pred as replacement therapy for life. Just like having insulin injections for diabetes or thyroxine for hypothyroidism. Nothing to be feared at all. But using the very slow reduction I describe has allowed many people to reduce their pred dose with little discomfort AND their adrenal glands have almost all managed to keep up and get back to normal. We also recommend that a synacthen test be done at about 5mg (plus or minus a bit) to see if the system is capable of recovery - in some people the adrenal glands are working less efficiently because of age and that is a perfectly normal part of aging which may be there anyway.

    • constance.de
      constance.de EileenH

      Posted

      Hee Hee!  "Pred is not addictive but your body becomes dependent on it".  I can't really get my head round that one. 😃😏
    • EileenH
      EileenH constance.de

      Posted

      Addiction is something different technically. Dependency is when your body requires a substance for normal physiological processes and you will become ill without it. Effectively, pred replaces cortisol in that sense and as you remove the pred your body must produce a bit more cortisol to replace it. You can't go cold turkey on pred - it isn't only unpleasant, it could be life-threatening. Going cold turkey on addictive substances you have abused for pleasure is unlikely to result in life-threatening collapse but it isn't something to be undertaken lightly with any substance.
    • grannyD
      grannyD EileenH

      Posted

      First of all I have to thank you Eileen, I read every word you posted on the PMR site and I followed the reduction table that you listed, took it to my Rheumy who agreed it was a good reduction and asked for a copy! I too would take 2 mg of prednisone for life it that made me mobile and pain free, but my problem was being told I no longer had PMR I now had RA. I was in denial as I believe is common to start with. I decided to take the prednisone out as the methotrexate is more than enough to deal with. The problem I had was trying to differentiate the pain from PMR/RA and prednisone withdrawal symptoms. As PMR is sore aching muscles and so is prednisone withdrawal. I was trying to convey to Constance that the symptoms (for me) were the same. The only way I could tell the difference was through inflammation markers in the blood test. While I was working through the prednisone reduction ( and I agree the methotrexate did not appear to help in that regard at all) I had no increase in my inflammation markers so I knew the muscle pain was withdrawal symptoms. Sorry if I am not making much sense. If I am dealing with RA I didn't want any other medication clouding the issue. To everyone out there who have multiple issues to deal with you have my full admiration, keeping mobile and pain free is a full time job! 😍
    • EileenH
      EileenH grannyD

      Posted

      Thank YOU GrannyD! 

      I'm sure you know it is something we go on and on about - you can't tell the difference between the 2 pains so taking one out of the equation helps a lot! 

      My question to them though is - how do you KNOW that this patient no longer has PMR as you have no definitive test and it is perfectly possible to have both. We keep coming across patients whose doctors have told them the PMR is gone, they must stop the pred. When they do so - having been perfectly happy at 2mg, sometimes even 1mg, weeks later they are almost as bad as at the beginning and back to 15mg all too often.

      Once they have a real test - not the inflammatory markers which can be pretty meaningless - then they can tell me I haven't got PMR/GCA.

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