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Reintroduction of my story

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DebbieHurts
DebbieHurts

Story of Polymyalgia Rheumatica

First I developed what was eventually diagnosed as fibromyalgia at 34. Then had endometriosis and got a hysterectomy at ago 40. Then a left knee replacement. Then a right knee replacement. While recovering I scooted on a bath bench and hurt my back; I had two kyphoplasties and a third fracture that was left to heal by itself.

Finally about 2010, when I was about 57, two years after my husband died, I felt a new kind of pain, more intense than the fibromyalgia. This pain was through my shoulders and waist, arms, legs. I went to a rheumatologist and he put me on some prednisone to see if I had what he called Polymyalgia Rheumatica. Over the next few days, I felt brand new.

I gradually reduced the Pred to 13mg, but after a bad pneumonea, I went up again to 25mg. Now for the last five years I’ve stayed high on prednisone. I got down to 16 recently, but then went into the nursing home with what the drs thought was my fracture in my back. But I noticed the pain was fierce in my shoulders, arms, waist, hips, legs, just like the bad Polymyalgia. The xrays didnt show that the fracture was any worse, but I spent a month lying flat with horrible pain in my shoulders and neck mainly. The drs don’t want it to be Polymyalgia, I guess.

But yesterday, here at home, I accidentally took two doses of pred. That is 38mg. By evening I felt completely normal and free of pain! My mind stopped obsessing on my health. I read my book, played on the computer; I was myself again!

This, along with reading the papers from my rehab nursing home saying my back fracture wasn’t serious after all, I feel I have PMR, that the back problem wasn’t necessarily caused by Pred.

I wish I could get help . Is there anything to do besides prednisone nowadays?

0 likes, 3 replies

3 Replies

  • Anhaga
    Anhaga DebbieHurts

    Edited

    There is an expensive biologic called tocilizumab, Actemra, not available everywhere. Lots more information at a more active forum, HealthUnlocked the PMRGCAuk community. You will find most of the people who used to post here over there now, including EileenH (PMRPro).

    • DebbieHurts
      DebbieHurts Anhaga

      Edited

      Thanks, Anhaga. I thought the forum was busier; now I know they moved. I tried Actermra, but soon after starting, I developed a bad infection in my leg and stopped it. I am only just recovred from a mess of problems.

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