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Re: Daughter has dermatomyositis/possible juvenilemyositis

Re: Daughter has dermatomyositis/possible juvenilemyositis

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Posted by Colleen Buckley on February 20, 2000 at 14:17:38:

In Reply to: Re: Daughter has dermatomyositis/possible juvenilemyositis posted by Louise on February 13, 2000 at 11:06:45:

: : My niece was diagnosed with dernatomyositis. This is my first time on a message board and I am not sure what I'm doing. She has several red dots on her face. Can anyone tell me anything about this disease?
: yesterday was my first time using a message board and I obviously did not get it right!
: My husband had dermatomyositis 16 years ago, was treated with steroids and azothyoprine and eventually made a full recovery. My 29 year old daughter was diagnosed last September and is being treated with steroids and methotrexate. She is managing to work in a sedentary job but everyday living - shopping, housework, bathing etc is difficult. this web site has lots f information but the disease is obviously very variable. keep in touch.

My daughter was diagnosed with dermatomyositis when she was 13 years old. Our family doctor had told us there was nothing wrong with her. He said it was all in her head and prescribed valium. At this point she had a rash above her eyes and on her knuckles, a positive ANA, and severe muscle weakness. She couldn't sleep at night and would cry because of the severe muscle pain. She had a difficult time walking up and down stairs and lifting her arms to comb her hair. We took her to the A. I. Dupont Institute in Wilmington, Delaware. They did a blood workup and an EMG, and made the diagnosis of dermatomyositis. Dupont had only treated two other children with this disease. She was put on a low maintenance dose of prednisone with monthly checkups for bloodwork. One year after being diagnosed, she had calcium deposits in her legs, which eventually dissolved. During her high school years, she was able to remain active in cheerleading and track activities. She was followed at Dupont until she graduated high school. She is still bothered at times by muscle tenderness and fatigue. She is now 27 years old, a college graduate, recently married, and doing very well.

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