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What comes AFTER PMR?

Posted , 11 users are following.

constance.de
constance.de

I was diagnosed 3 1/2  years ago.  Many ups and downs.  I've now been told - PMR in remission.  Inflamation and blood count almost normal.  However, I still have quite bad pains ( shoulders/arms/wrists/hips).  Thought Dr said PMR was in remission!!  Has anyone else suffered like this?

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  • old_nanna
    old_nanna constance.de

    Posted

    never know weather to click on reply to ,,, or just reply lol here goes anyway , i have lost "replys " before ............now i can only go on my experience constance , i too was diagnosed 2 years ago , and gradually weaned myself off prednisone and have been "clear of paqin since last august , BUT , my siatica and left side of lower back gives me hell at night , now i feel the prednisone must have been hideing that lol but its in my hands to fix that problem , i dred going to the physio , and i know its my fault from not continuing with the exercises to start with and its the inflomation that causes the pain , so its back to basics and watch what i eat and drink lol but im a believer in that anyway lol and i am tempted to sway off sometimes ... im sure my building up my imune system is the go , but i will be checking my blood every 3 months anyway , BUT again , lol im 85 years young , so im fighting against OLD BONES as well   maybe check what you are eating good luck anyway 
  • old_nanna
    old_nanna constance.de

    Posted

    i forgot to mention , i only take a couple of PANAMAX  some times , maybe at night , i find they could cause more trouble in the lineing of my tummy , ,, one question , are you any better after you move around , or worse , 
    • constance.de
      constance.de old_nanna

      Posted

      During the night and early morning I have quite a lot of pain.  However, as the day goes on I have fewer pains and can move around easier.  As the saying goes as one gets older "keep taking the tablets"!!  All the best for the future.
  • joan123456
    joan123456 constance.de

    Posted

    I had the same experience, however, I was not in remission.  Once I went back on the prednisone I was better again.  I am from Canada, and they don't appear to be as informed as doctors in the U.K.  After being off the prednisone I contracted an infection in my sinuses that was absolutely impossible to get rid of without a long term doses of antibiotics and the raising the prednisone levels up.  Now feeling better but it took a good 5 months.  I am back up to 4 mg of prednisone now but hips r still a bit sore but not unbearable.

    • constance.de
      constance.de joan123456

      Posted

      Good morning Joan (well it is here in Germany).

      When I read the caption I thought "that is exactly the same question I started with on this forum" - I didn't think it was my own question from three years ago!!  Three years - I just can't believe it.

      Unfortunately I am still suffering with PMR and a lot of side effects.

      I have now had very aggressive PMR for 5 years.  It is, of course, much better than it was, after many flares, 4 two week stays in hospital, etc etc.  I am at last on 3 1/2 mgs.  The doctors and rheumatologists just didn't know what to advise next.

      Keep reading the posts on here.  I do not know how I would have managed without this forum.

      Greatings and wishes for a speedy recovery.  Constance 💐💐

    • EileenH
      EileenH constance.de

      Posted

      "The doctors and rheumatologists just didn't know what to advise next."

      I'm sure I'll have said before - patience! I, after all, would be delighted to be on 3.5mg after 5 years! My 7mg after 13 years of PMR/8 years of pred makes your dose look fine! One third of patients still require pred at 6 years - shown in a study. It's fine.

    • constance.de
      constance.de EileenH

      Posted

      I know Eileen.  I am patient - now!  It took a long time for me to believe that I was going to be one of the "long termers" - not me I thought.  'I am such a healthy person'!!! I've accepted it now (thanks to you at this forum).  I was just so very surprised that someone had answered a post which I wrote 3 years ago.

      I go my own way now - I don't visit the doctors (luckily I can always get repeat prescriptions.  I still have my blood tested every six months - an agreement with my rheumatologist - mainly just to 'check', but he insists because of the polyarthritis (my main bugbear now).

      The thing I miss most is 'movement', every day and journeys.  We used to travel such a lot.  Still we're both still here (78 and 82) nearly 60 years of marriage.  Hey who is moaning?

      Keep smiling.  C.

    • EileenH
      EileenH constance.de

      Posted

      Someone answered a post the other day that was in a thread that was started even before MY time!
    • Anhaga
      Anhaga constance.de

      Posted

      I discovered this forum by reading an old post about tapering pred - I'd asked Google if one could increase the dose if pain started to return after tapering.  Can you believe it?  What did I know?  But the archives here helped me, and I joined.  

    • constance.de
      constance.de Anhaga

      Posted

      I was "hooked" as soon as I sent that post in.  Eileen made me laugh and I thought "this is great, not all gloom and doom" - it was a long post and, not being one who dieted or stressed out I was amazed at some of the answers.

    • julian.
      julian. constance.de

      Posted

      but, hopefully, even after "a long time" and "patience" we never stop asking "what's after PMR?".

      we'll know when we get there ... but in the meantime we do what we can, and occasionally find we can do the things we think we shouldn't,

      we've only been married 43 years ..... I'm hoping the pollywhatsit will have faded away by the time we get to 60 years.

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