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.
Is it advisable for someone with scleroderma to use only alternative methods such as vitimans, herbs, and natural health products for treatment and refuse any and all approved drugs for treatment.
My rheumathologist, has told me that he will be using Embrel to treat my scleroderma/ mixed connective tissue illness. What is your advise on this? I am on metotrexate and plaquenil, but I have noticed that I am deteriorating very fast…finger, hand wrist, arms, knee pain is so bad, so bad, it feels that I will brake bones at any moment, a weeks ago I was not able to close myy rt. hand, the bone and tendons in my wrist were frozen and the pain was horrible, he injected me to reduce the swelling. please advice. Thank you. I am thinking of making an appt. with Dr wigley.
Dear Dr. My MOM has been has scardoma and is in pain daily as the days get colder here in NY her hands hurt her so bad and her lower back a long with other pain, but I was wondering if you have any suggestions how to keep her hands warm and comfortable she is in such pain it breaks my heart.