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Old 10-19-2009, 09:45 PM   #10
sammyandcompany sammyandcompany is offline
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Join Date: Oct 2009
Location: ohio
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Re: Help - Just diagnosed with Dermatomyositis

Glad things seem to be stabling for you. Are you on anything beside prednisone? If not, you really are lucky the pred is keeping it under control. I was not that lucky, I started 60mg pred and methotrexate for almost one full year before my symptoms began to get a little better. cpk was over 5000 when first diagnosed. Stayed on Methotrexate 8 tablets per week (taken all at the same time) once per week, but Dr. started lowering the pred as the cpk began to get lower. After 4 yrs on the methotrexate, started getting really scarry side effects and told Dr. I would not take it any longer so we switched over to Imuran. It has done fine. As far as your question, my disease has "always" remained active, never have I gone into remission. The way you can tell is as your meds are decreased, if your immune system is still attacking your muscles your cpk number will go up. My dr. just plays with the doses and every 5 weeks I am tested for the cpk. If it goes up, he raises the dose. If it is stable, he tries to lower the dose of the pred, and keeps doing that until he finds what "maintenence" dose will keep it under control. Unfortunately, the side effects from the prednisone (8 yrs worth) has caused me as much agony as the disease. Over time, the pred can cause bone deteriation my bones are like paper. Crack ribs when I cough, broke my ankle doing nothing at all, and both of my hip sockets collasped and I had to have two total hip replacements. The side effects from the disease itself and from the methotrexate and the Imuran also can cause lung problems. Mine are severe. I have intertitial lung disease now, (that is when the scar tissue infiltrates your lungs) And unfortunately I also have emphezema and COPD. I even tried IVIG infusions for the Dermatomyositis in the hope that I could get off the prednisone and the other drugs, and made it through 4 sessions, and it seemed to be working but before the 5th session, I had a blot clot to the heart and it caused a heart attack. It may have happened anyway, and no way to tell if the infusions had anything at all to do with it, but I was too scared after that to try again. Right now, the muscle disease is remaining stable, but the lung issues are getting progressively worse. The lung doc keeps raising the pred now to help me breathe, along with about 4 different lung meds. My cpk seems to stay around 225 for about the last year which is a far cry from 5000 So I count my blessings. I try to take each day as it comes and deal with whatever comes my way. I will tell you 8 years ago when I was diagnosed, I honestly didn't think I would make it this long, so I am thankful. I hope you stay stable, and I will pray that all goes well for you.

 
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