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Off pred. and in pain.

Posted , 9 users are following.

afabchic
afabchic

Hi all.  I have taken 2 and a half years to get off the pred.(down to just 1/2 mg every fifth day) I am now in pain again and am taking only paracetamol as all other stronger pain killers give me really bad tummy pains ertc.  I have lost so much weight and all the other side effects of pred. that I am very very reluctant to even think about going back on it.  My ESR was 158 on the last test.  But all other indicators were clear.

I have no muscles at all and find even basic lifting etc. very hard.  I am thinking about walking in water and arm movements underneath so there will be little strain etc.

Is there anyone out there who has been in a similar position and managed to stay off the pred?  Here's hoping!

0 likes, 10 replies

10 Replies

  • constance.de
    constance.de afabchic

    Posted

    GO BACK ON THE PRED!!  You know it makes sense.  Wirh an ESR of 158 there is obviously a lot of inflamation still there.

    Pred is a beast, but it is a kind beast - it helps you to be pain free (or nearly)!

    I habe been on pred for 5 years (down now to 4mg).  Eileen has been on it for over 8 years, Nefret for 13+, many others between 4 and 6 years.  We're not dead yet, so why are you worrying after only 2 1/2 years?

    Paracetemol will only help a little.  Have you asked your doctor if there could be anything else keeping the inflamation high?

    Regards fr Constance. 💐

  • EileenH
    EileenH afabchic

    Posted

    I had 5 years of PMR not on pred. Nothing would induce me to go back there. Constant pain and disability is too draining. 

    You do have to bear in mind too that it isn't "just" a benign case of sore muscles. The unmanaged inflammation in your body puts you at risk of other illnesses in the longer term such as cardiovascular/peripherl vascular disease and some cancers included. To have a level of 158 in PMR is suspiciously high - and I think you possibly need to get your doctors to do some more investigations. Since you say you have lost a lot of weight and "have no muscles" - is it REALLY PMR? Have they ever checked your creatine kinase level? 

  • daniel08939
    daniel08939 afabchic

    Posted

    I had pmr for three years and then was off prednisone and pain and all symptoms free for three years. It came back six months ago and I am back on prednisone.
  • ptolemy
    ptolemy afabchic

    Posted

    Dear afabchic, as the others say I would definitely increase the pred, you would be mad not to. I panicked when my CRP went up to 132 the other day and so did my GP. An ESR of 158 would also panic me. There must be some reason for such a high reading, it is not to be ignored.
  • Anhaga
    Anhaga afabchic

    Posted

    It seems to me your reluctance to go back to a higher dose of pred is based on your experience of the side effects which I completely relate to.  I think it would be wise for you to follow the advice of Constance and ask your doctor if there could be anything else other than "simple" PMR keeping your ESR high.  If you do have to take more pred again, ask your doctor what you can do to mitigate the side effects.  I lost a lot of weight pre-pred, and I've lost even more over the past two years, plus have lost a lot of muscle mass and strength.  I can't imagine returning to the pre-pred pain.  Throughout this unpleasant journey I've stayed physically very active, and I'm also trying to do a lot of other things which may reduce inflammation so that when I get as low as you (I'm still a few months away, at least, although nearly to 1.5, fingers crossed) there will be something else helping to keep inflammation levels low.  For me, initially, it was hard to accept that I would have to change my lifestyle, but I have to say I seem quite settled into what I once would have considered immoral laziness.  But now I'm having to accept that even if I complete the transition to zero pred I may never again be the healthy person I always perceived myself to be.  Given that I may now always be weaker anyway I have to learn to accept that at least pred enables me to move without disability, and at these vanishingly small doses it's almost certain that the benefits are greater than the disadvantages.  

    • ptolemy
      ptolemy Anhaga

      Posted

      Hi Anhaga, my sister's godmother had PMR in her sixties. She is now in her nineties. She is still very glamorous and looks like someone out of Vogue. She has seemed a lot fitter than others of her age since she stopped the steroids over twenty years ago. There is hope for you! Also a friend who had PMR is now back to playing competitive tennis and leading a whirlwind life. 

    • Anhaga
      Anhaga ptolemy

      Posted

      Ah, well maybe she looked like that before pred?  Reminds me of the old joke, Doctor, when my arm is better will I be able to play the piano?  Yes, of course.  Oh good.  I always wanted to be able to play the piano.

      Although people are very kindly saying to me that I don't look seventy (had my birthday a couple of days ago).  Don't know if I can believe them, but I'd like to. cool

    • ptolemy
      ptolemy Anhaga

      Posted

      Yes she always looked like a model, but PMR did not stop her looking and acting like one!
  • afabchic
    afabchic

    Posted

    Thanks to all who have posted!  

    I have seen my GP today and she is looking into possible reasons for the ESR level, which by the way I was informed was 158 but it would appear to be only 102 which is much better.  I am having monthly bloods and keeping an eye on the weight loss.

    Also I have decided to 'pulse' dose 1mg pred. as and when I feel I cant cope.  I have read about this and it does seem to help sufferers through the first year off pred completely.  I do not take any at al - I am sorry if I implied otherwise!  My NEW GP says this is a perfectly logical way to top up cortisol levels in the short term.

    I will try to keep up wth the posts and give information because I feel this is a way forward for people who are so much better off the steroids.  I realise I psrobably put up with more pain but I do feel healthier for it.

    Has anyone use walking etc. in the swimming pool to build back muscles - in a very gentle way of course?

    • EileenH
      EileenH afabchic

      Posted

      Sorting back muscles probably requires rather more targetted exercises than merely walking in a pool. I used to do an aquafit class followed by Pilates a bit later in the day - that was with PMR but without pred. Walking, in the pool or anywhere else will help leg muscles - but not the back.

      Your best bet would be to get an appointment with a physiotherapist and discuss it.

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