I’ve read a couple of stories regarding scleroderma being treated with the antibiotic minocycline. Trial clinic at John Hopkins. Where can I find the info?
Systemic Sclerosis Q & A
I believe my scleroderma is diffuse, but the question is the same for either form…….is memory loss associated with scleroderma? I’m having an increasingly difficult time with memory – both short-term and long-term.
My mother aged 47 years, is a known case of hypertension for last 5 years. Currently taking Losartan 50 mg twice a day, Ditide 12.5 mg twice a day, Amlodipine 10 mg once a day and Prazosin 5 mg once a day. She is also a follow through case of hypothyroidism, taking Eltroxin 150 microgram per day. She is also a follow through case of CREST syndrome. For past 2 years she is having dyspnea on exertion and cough. She was recently done CT thorax demonstrating early changes of interstitial lung disease. On PFT there is restrictive lung pattern. I am an MD physician and wants to know whether I should start Cyclophosphamide and Predinosolone or I should go for less toxic drug like Mycophenolate mofetil. What are other alternatives?
I am a former patient of Dr.Wigley.He followed me for a few years while I lived in Baltimore and worked at JHH.I have CREST syndrome.My PFT has gradually gotten worse and my breathing is worsening.My rheumatologist is suggesting Cytoxan.How are you treating ILD in your patients with CREST or Scleraderma?Are there any clinical research studies that I could be involved in?I am very concerned about my condition and the related shortness of breath and weakness.
My wife has recently been diagnosed with CREST/scleroderma. Can anything be said about the overall life expectancy of people with this diagnosis?
I’ve been seeing Dr. Carole Dorsch of York, Pa. for several years for treatment of schleroderma crest. I have several spots of calcinosis on my right index finger. Dr. Dorsch retired in June this year but before leaving she mentioned a Doctor at Hopkins was successfully removing calcinosis spots. Do you have any information on this Doctor? I would greatly appreciate it.
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