PMR, PREDNISONE, RECOVERY

Posted , 6 users are following.

does the PMR just disappear one day, or is it gradual? I imagine it is different for everyone, but can the PMR go away when you are still tapering the prednisone? How would you know? I am sure this has been discussed but I cannot find the thread. Does anyone remember being free of the PMR and the prednisone? Thank you for any input!

3 likes, 14 replies

14 Replies

  • Posted

    Just disappear one day- what a wonderful thought!!  We are all hoping for that.  Mind you, I have a friend (rather young, 52 then) who got up one morning, two years after starting PMR, went about her business and suddenly realized she had no pain - and IT NEVER RETURNED - she is 64 now.  We live in hope!
    • Posted

      Happy, pain free, Easter Margaret ( and everyone else )!

      She was a typical (according to the experts!) PMR patient.  You get it, you take pred, you reduce it, and it disappears after about 2 years!!!!

    • Posted

      Is it wishfull thinking do you think , seems easy to what i have read you ladies have gone through. Hope you have a lovely Easter too.biggrin x
    • Posted

      About a quarter of people get off pred in 2 years or so so it does happen. I even know a couple with GCA who were able to get off pred in about 2 years.

      Everyone has to reduce their pred slowly at some point. Once you have been on pred for some time you must reduce in steps because your body has become used to having it present and has to learn to make its own natural steroid cortisol again. You must NEVER just stop taking pred after you have been on it for a few months - you could make yourself very ill so always make sure you are not going to run out over a weekend or on holiday.

      The reason we say to reduce so slowly though is less that fact than that it is only by reducing in such small steps that you can find the lowest dose which manages your symptoms - you want your symptoms relieved but you don't want to be taking more pred than you need

  • Posted

    There is no way of knowing - that's why you have to keep trying a small reduction, if it works, try another step. If it doesn't work, it probably hasn't gone away. But if you stick at a dose because it is comfortable then you will never know if the PMR has gone.

    A couple of ladies who are off or almost off pred say they woke up one day and felt different - and they never had another problem with reducing although they still went very slowly to avoid withdrawal problems.

    " Does anyone remember being free of the PMR and the prednisone?" - do you mean pre-PMR? I remember life before PMR although it is over 10 years ago. I can still visualise the days when the symptoms started, when I found step classes harder and harder. Then 5 years of pain and stiffness before pred.

  • Posted

    Have not got to that position - yet!  I can understand, if like me, having reduced slowly down to 8 mg from 30 over 9 months, without hitting any major problems, you begin to think 'maybe I'm OK or it's gone'?  Its very difficult but  I firmly believe it's given to us to test our patients?  We are all different and I know I have to understand my own body and what it's telling me - and listen!!
    • Posted

      Be careful, I thought that, and at 7mg hit the wall!  Have been from 20mg down now to 15 mg since xmas and feel very ill, severe fatigue and still blurred vision, struggling to get out of chair!....will be glad when I see my Rheumy in two weeks time, although not sure what she can do, if can`t stop steroids, and no alternative..........wish me luckconfused
    • Posted

      oh take care linda, do what these ladies say love as they have been through and do know the signs, have a lovely Easter. Mags
    • Posted

      Thank you Margaret, I just wish I knew what was going on...after doing so well...I just know something really is`nt right.  I have a husband with a similar attitude to yours....who originally told me "no good will come of you on those steroids"....well, hope he`s not right!rolleyes
    • Posted

      its easy for them linda they dont have, and dont want to know, i skitted at my hubby yesterday and he said hope thats name aimed at me, i just give him a look, because i think i would have exploded, and it was not the right time,

      I was like that 2 days ago, talk abount panic but i am taking Eileens advice, what the doc will say on wednesday i don know, but i am not lowering just yet, my neck is swelling and the feeling in my head and temple keeps coming and going so i know its not time to reduce, i am sure i will be told by Eileen if im wrong. Have a lovely Easter, take care and try not to worry too much, we are all here for you.biggrin

  • Posted

    What a great question.  I have this in the backk of my mind all the time.  Especially, my symptoms of bloat and appetite, it really has gotten out of control and i am so looking forward to the day the PMR disappears!  My pain/discomfort is all but gone, i am on 10mg pred;next week i drop it down to 9mg.  I am looking for some hope that there is an end zone...

     

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