Systemic Sclerosis Q & A

I’ve seen references to an increased risk of stroke in people with Raynaud’s syndrome. In particular I see references to research by Frederick M. Wigley of Hopkins. Can you tell me about this and if there’s anything that can be done to lower that risk?

I have diffues scleroderma and my main problem is the fast and strong stiffness of the muscle and joints,I tried many kind of steroids(oral,IV,IM) but there was not much good,so do you have any other treatments for this problem,and is there any kind of surgery for hand fingers to improve there movement.

My sister recently saw a rheumatologist at Pennsylvania Hospital in Philadelphia. She had been diagnosed with fibromyalgia, and was looking for a second opinion, although she has been suffering with this for years. The Dr. affirmed the fibro, and also diagnosed scleroderma. He did not give her any info or indication of the seriousness of this disease. I have been researching and am alarmed at the casual attitude with which this diagnosis was given. He prescribed aerobic excersize, and wanted an MRI of her legs, which is where the most severe symptoms are presenting: muscle wasting, major differentiation in size and shape of legs. My main question to you is this: Who is the foremost expert on this condition in the US? Next, are there any drug or other treatment trials going on in the Philadelphia area that you know of? And finally, what are the questions one ought to be asking their rhematologist when diagnosed with scleroderma?

Should I be seeing a specialist in scleroderma or is the average rheumatologist capable of the best care? Also, I would like an opinion on treatment with penacillamine or some other antibiotic etc that is presently giving good results

My father in law was diagnosed with Morphea. Although this diagnosis is questionable to me because he also has pulminary hypertension which seems to be a more common sympton in systemics. He has also lost so much weight even though he eats to gain. Which seems to mean that nutrients are not being aborbed by his intenstinal track. He has been treated by a renound clinic for the past year. He has been on chemo drugs and even receieved a stem cell transplant, which after the 100 day, showed no signs of working. In fact, proteins were higher. He has been to 2 clinics and seen by several Drs. We to find, like many of your posters, that there is a casual attitude concerning the seriousness of this condition. He is now taking thalidamide (spelling) and Dioxon (spelling) chemo drugs which have caused a PE which he is in the hospital for now. He is miserable and seems to be getting worse and any advice you could give would be appreciated as we dont know what to do next. Thank you.

My husband is 36 years old and in relatively good health. He was recently diagnosed (through biopsy results from his hands and feet) with dermatomyositis-scleroderma overlap. His hands are rough, and he has a couple of patches that come and go on his elbows, tops of his feet, knees and eyelids, although none of them are serious at this time and they are smooth normal skin most of the time. He also has joint pain, but nothing very serious yet. He was hospitalized last summer for bilateral pneumonitis last year and has pulmonary fibrosis. He is on oxygen at night and very little during the day (just during exertion). Otherwise, he functions on a fairly normal level. I did read your response to another person’s question that there is not a specialty clinic within Johns Hopkins that targets dermatomyositis. I also read, however, that someone with the DM-SCL overlap disease participated in one of the Johns Hopkins clinical trials (it was a scleroderma trial, I believe). If he could not participate in one of your clinical trials, please let me know if you suggest someone else in the field.