Systemic Sclerosis Q & A

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?

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.