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Polymyalgia

Joanne

Message 16 of 55 Previous Next



I have also been diagnosed with Polymyalgia Rheumatica and am on Prednisone. I started with 60 mg per day and am now down to 20 mg per day; however, with the last cut from 30 to 20, I could tell a big difference in the way I felt. I have some stiffness which I did not have with the higher dosages. I despise taking this drug and refused for 2 years; however, the pain became so intense that I had to give in to my Doctor. I am also taking 1200 mg of Neurontin and 40 mg of Ultram and 2 different muscle relaxers daily to help combat the pain associated with Polymyalgia Rheumatica. I can sympathize with anyone who has this dread disease and unless you've had it, you can't imagine the pain associated with it. I was so stiff and sore that I could only get up out of a chair by rolling over on my stomach and bracing my legs and push up with my hands. I now also have carpul tunnel in both wrists and I feel sure it's from all of the weight that has been lifted for the past year or so solely by my hands and feet. I am hoping that the day will come when a drug will replace the prednisone as I have side effects - some good - some bad. I have loads of energy, but I have difficulty breathing since I have such a mass amount of fluid retention and I have the "moon face" that comes with large dosages. I've always had very slim facial features and I now have one as round as a ball. I have only been on the drug this time for a little over 2 months. I had been on it about 2 years ago but gained so much weight (mostly fluid)that I refused to take it any longer. However, this time, when it stopped the terrible pain, I decided I'd stick with it for a while. I feel sure that my dosage will remain at the 20 mg or higher daily and my doctor says I may always have to take it. We'll see. Surely, someone can come up with something that would help and not destroy bones and the other things that Prednisone does. I guess this doesn't help you any, but sometimes it helps to talk with someone who really knows what you're going through. I do a lot of research on the disease and in one article I read, it stated that if it were taken consistently for a long period of time, that a person could sometimes come off of the drug and still be free from the pain of Poly Rheu.

 


   
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