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Dermatomyositis

Can it take 8 yrs to diagnose dermatomyositis?? Can it be that slow progressing? First elevated liver enzymes 2006 with liver biopsy normal we just left it alone. 2011 creatine kinase was 1100 and other times as high as 3500 which over the course of several months seeing several specialist ended up having 3 muscle biopsies that showed chronic inflammation but no answers. Again left things alone for a bit. 2013 decided I wanted to pick it up and saw new docters since I had moved. Ended up a another rheumatologist who started treating me with prednisone and methotrexate. It's been three months and my enzymes are going up instead of down. Now he wants to try ivig treatment. He hasn't officially diagnosed me with dermatomyositis but believes that is what we are dealing with. I hear ivig is expensive .... What do I do? Does anyone else have this disease and have advice?
2 Responses
7592732 tn?1407252265
HI Williejee03,
sounds like your current Dr. is on the right path,  curious as to how much prednisone you are on or was started on.  if you have Facebook you may want to join a group called "myositis ramblers".   it is a closed group, you have to ask to join, and this is for adults with dermatomyositis, (DM) polymyositis (PM) and or inclusion body myositis (IBM)  hope this helps.  
Avatar universal
Any diagnose for your Issues?
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