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I was diagnosed late 1999 along with RA. The first started me out on high dose of prednisone along with methotrexate. Then they took me off methotrexate and put me on immuran My cpk levels came back down to normal but every time they try to take me off the prednisone it would flare back up. Finally back last Sept (05) was completely off the predinsone and slowly come off the immuran. I had little pain but was feeling better. Then late March (06) I had a relasp. I could feel it coming on again. Well, I am back on the prednisone and now cellcept.(60 mg every day of prednisone) They have been lower prednisone since the earlier part of June. (as of date 60 mg on even days and 30 on odd days) By Sept. I should be taking 60 mg every other day. At this time I am not feeling any pain but thats the prednisone covering it up. Good luck to all and keep the fight up. If you feel that your doctor is not helping you. LOOK for another doctor. Some of the doctors have never delt with myosits.
[QUOTE=tschreib1]I am a 36 yo female that was just diagnosed with Polymyositis last month. My doctor sent me to the hospital with a CPK level of 39,000. I spent a week in there on IV Fluids and high doses of Prednisone. I start Methotrexate this week and will be off the steroids in 5 weeks. My CPK level is now 94 and I feel good. I am hoping to never have a relapse again but of course I have no way of knowing if that will happen. I am wondering how other people have faired after being diagnosed and how long they went without a flare-up. Also if anyone knows of any side effects for the Methotrexate I would appreciate hearing that as well. I originally went to my doctor for muscle pain, I had felt like I was hit by a truck. I heard it was rare to have the pain...[/QUOTE]

I only took 10 mg of Methotrexate and I feel so weak in 3 days that my voice fades away when I talked. My Physician removed it from my treatment and replaced it with Imuran 150mg. In addition I was also taking Prednisone but 40 mg made my muscles weaker and brought my blood sugar up. My doctor reduced it to 20. It took 1 1/2 years to wean me off 20mg of Prednisone. I am down to 50 mg of Imuran, continue taking Fosomax and multi vitamin. I am closely monitored by my doctor followed by scheduled blood work. My CPK is 43 on my last check up. I also have a bone density test to check bone lost. I am 54 years old and I'm back to be able to do things like play 18 holes of golf walking. Good luck.
Yes, one of the my symptoms is difficulty swallowing and I also can not hold my head up when I get up. I have to turn to my side and push myself up. I was told by a specialist at UW that if not treated, I will be in a wheelchair and probably be in tube feeding. I had a feeling I was heading down that road if not treated soon. My doctor started me with 10 mg Methotrexate in combination of 20 mg of prednisone 3 times/day, Vitamin E, mutivitamin and Fosomax. He has to replaced methotrexate with 150 mg Imuran. I got so weak with methotrexate I don't have the energy to project my voice. Within 2 weeks he changed the prednisone to 20mg once a day ( very slowly wean me off for over a year). My treatment started in April 2004, June 2004 I was walking OK but my CPK still in 5000 range. He added the Gamma Globulin infusion 3 consecutive days in a week/month for the next 3 months. It's been 1 1/2 years and I am only taking 50mg of imuran, Fosomax and mutivitamin. I have blood work done on regular schedule and see my specialist doctor every 4 months besides my PCP. I am hoping that Polymyositis will never come back. Listen to your body, work with your doctor in your treatment. Sometimes it just a matter of adjusting the dosage or finding a right combination of medications. Good luck





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