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diagnosed in March2017

Posted , 14 users are following.

carol_ann35477
carol_ann35477

I am 70.  Experiencing weakness arms, thighs, increasing fatigue over two years before finally being diagnosed in March 2017.   Was on and off prednisone every two to three months, as GP kept saying it was not good to stay on.   Each time it was stopped I was back in bed within a day or two.  Finally saw a ruematologist and diagnosed in March.   Started on 20mg Prednisone,  and told to decrease every few weeks till 5mg.  It is very difficult to decrease it without fatigue and pain returning.   Have had to go back to 20 and am now decreasing by 1/4 mg. every four weeks.   this week stated on 13 3/4mg.  However I am experiencing pain in my shoulders and left arm, and increased fatigue.   The pain I can deal with but the fatigue is really hard.  I have always been quite active,  plus my husband and I have been and still are raising our grandson since he was 4, now 13.  My question has anyone stayed on 20 mg for a long time say months,   I am reluctant to do this because of possible side effects.  I cannot take Fosomax or the other med for prevention of loss of bone density because of side effects.  I would just like to have a few months of feeling able to function at a near normal leval.   I would really appreciate hearing from anyone who is on 20 for any length of time.   Thanks 

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  • Whisper2003
    Whisper2003 carol_ann35477

    Posted

    Hi, Carol Ann. You didn't mention Vitamin D in your supplements. My rheumatologist thought that was the most important one to always take.Has your level been tested? Vitamin D levels need to be correct to allow calcium to reach the bones. Also magnesium and K2. I hope you will be pain free soon. Good luck!

    • carol_ann35477
      carol_ann35477 Whisper2003

      Posted

      Thanks,  yes I am on Vit.D asmy levals were low.  I take a multivitamin but do not know if it povides adequate levals of K2 and magnesium.   
    • sandy08116
      sandy08116 carol_ann35477

      Posted

      I take magnesium as well (occasionally). My doctor didn't prescribe it but said it wouldn't hurt to. 

    • Michdonn
      Michdonn carol_ann35477

      Posted

      Carol Ann 35477, I have read equal dosages of Calcium and Magnesium so I take 1200 mg of both and have for years.
  • Marla0415
    Marla0415 carol_ann35477

    Posted

    Hi Carol,  Sorry you have joined those of us who have PMR.  I was diagnosed in July of 2015 but actually started symptoms in March of that year.  I never dreamed at the time I would still be dealing with it.  If you are looking for someone who has been on a 20 mg dose of Prednisone for a long time I'm your gal.  I started at 15mg when first diagnosed and after 3 months was told to reduce to 12.5. All my symptoms returned so my RA  Dr told me to go back to 15mg for a month and try again which I did.  However this time she wanted me to continue to reduce.  By the time I was at 10mg all the original symptoms were back in full force......lots of pain, needed help getting dressed, could barely get in and out of the car.  To make a long story short I ended up being put on 20mg in order to get the inflammation and my symptoms under control as 15mg would no longer do the job.

    Although I am now only at 17mg a day I was on 20mg for many months. I did try to reduce but without success.  I have all the usual side effects of Prednisone...moon face, weight gain, thinning skin etc etc.  I would rather not have to take so much and I have taken other drugs to facilitate reducing the Prednisone but so far with little success.  This isn't to advocate taking 20 mg Prednisone by any means.  You take what you need to in order to control the inflammation and be able to function.  For me that was 20 mg for a long time.  I still don't know where the road leads for me.  I currently take Methotrexate injections to help facilitate the Prednisone reduction.  But still it is a slow process for me.  I'm really not sure if it is doing anything at all except making me more tired than I am anyway with the PMR.

    • Marla0415
      Marla0415 EileenH

      Posted

      I used the method recommended on this website. Originally I just dropped like the Dr told me but of course I didn't know any different 

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