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[QUOTE=pattianne24;4259470]I have joined several forms and read all i could about this illness. I realize that not all of us suffer the same. My muscle weakness is mostly in the legs, and the pain is horrible. I have had cronic severe pain for 15 years now. I have been on several prescriptions, currently take morophine and oxycodine. My legs have gotten so bad that I can't walk 1 block. My husband of 43 years died suddenly and now I am left alone to battle this on my own. As much as I want to get on with my life this illness is holding me back. I don't know that there are any answers for me. I responded well to prednisone and also took immuran and methatrexate for this illness. Unfortunately these meds can cause other problems, one of the side effects of the immuran was early cancer and I needed a hysterectomy. It is a nasty illness, and seems that when you get one autoimmune illness others follow, at least this has been my case. I now also have hypothyroidism, and psoratic artheritis in most of my joints. As I said, all I can do is try my best each and every day and try not to worry. Life can really suck and to think I might have another 25 or 30 years with this makes me terrified.[/QUOTE]
Pattianne: I see that you responded well to prednisone and methatrexate but do not have those drugs now because of the side effects, right? I was diagnosed almost two years ago. Responded well to prednisone, in April CPK had gone up again and in June, it had gone to 450 (after a year in the 100's; it got as high as 6,500 before the meds). Now, I am injecting methatrexate once a week with idea that it will absorb better. Question is this: did you do injections? I am not in pain but feel really tired out--just draggin' tonight. I have the idea that things will get worse, not better. At least I read that injections is a second line of treatment. Arrrrgghhhhhh! Good luck to you. We may need some good luck, don't you think? I just wonder what happened!
julie
[QUOTE=pattianne24;4259470]I have joined several forms and read all i could about this illness. I realize that not all of us suffer the same. My muscle weakness is mostly in the legs, and the pain is horrible. I have had cronic severe pain for 15 years now. I have been on several prescriptions, currently take morophine and oxycodine. My legs have gotten so bad that I can't walk 1 block. My husband of 43 years died suddenly and now I am left alone to battle this on my own. As much as I want to get on with my life this illness is holding me back. I don't know that there are any answers for me. I responded well to prednisone and also took immuran and methatrexate for this illness. Unfortunately these meds can cause other problems, one of the side effects of the immuran was early cancer and I needed a hysterectomy. It is a nasty illness, and seems that when you get one autoimmune illness others follow, at least this has been my case. I now also have hypothyroidism, and psoratic artheritis in most of my joints. As I said, all I can do is try my best each and every day and try not to worry. Life can really suck and to think I might have another 25 or 30 years with this makes me terrified.[/QUOTE]

I have had Polymyositis for 25 years and pain was my biggest problem. I was near suicide when I was diagnosed because of the pain. All I could do was lay flat on my back and not move. Any movement was so very painful and I did not want to live if I had to deal with that pain for the rest of my life. I was 39 at the time. I am now 64. I just retired from teaching. Teaching kept my mind off of myself. Pred. did not work for me so we changed to Medrol and it works great. I don't know why, they are both steroids. Immuran and methatrexate did a number on my liver so the GI told me not to take that POISON. So I stopped, my Rhume was really mad at me when I stopped, but I figured the GI knew what was best for me. I am now trying to get off the Medrol after 25 years, but I think it is not going to happen. My adrenal gland just wont kick start. My Endo says he will be happy if they can get me down to 4 mg a day. My cortisol level drop very low when we start going down and I feel like I am dead, but I keep trying. Let me know how you are doing.





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