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Old 09-28-2008, 09:41 AM   #1
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Finally some Success with Dermatomyositis Skin Condition

I developed the dermatomyositis skin rash about 13 months ago. Went for all the cancer scans and they were negative. Never developed any muscle problems either (thanks goodness). Went to see a noted Dr. at the Hospital for Special Surgery in NYC after 6 months of getting nowhere fast. He started me on a course of Plaquenil, which had no effect, although he is still keeping me on it. After that, I was started on a regimen of prednisone which also had no effect. In early September, the doctor set me up for IVIG....4 days straight at 40 grams per day. After about 10 days, things started to happen. My shoulders and back are now clear, the redness in my face is down about 80%. My upper chest is almost clear and my arms are now showing signs of improvement. The only area with little progress are my hands which are still purple and scaly on all my joints. I am scheduled for another 4 days of IVIG starting October 6 and hopefully I'll see even more progress. Thank goodness for insurance because I understand the cost of each course of IVIG is in excess of $10,000.

 
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Old 10-04-2008, 09:45 PM   #2
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Re: Finally some Success with Dermatomyositis Skin Condition

hankster sounds like things are finally getting there for you. My hubby has DM but he also had the cancer and severe muscle weakness along with the rash. He still has the purple, red hands but not scaly. The docs always comment on his hands but he doesn't put the sunscreen on them when he goes outside and is always doing something and using hot water.

So glad to hear you did not get the muscle weakness that was awful. Hubby gets an injection once a week of methotrexate for the muscle inflammation and uses topicals for his rash and facial redness which have really disappeared.

Glad you are getting better
Glojer

 
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Old 03-05-2009, 06:16 PM   #3
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Re: Finally some Success with Dermatomyositis Skin Condition

Just an update.....about 90% of my rash is gone. Haven't had any IVIG treatment since the beginning of December (just to see what happens) and so far everything is great. Still taking plaquenil but other than that after 3 months no reoccurence.

 
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