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.
Systemic Sclerosis Q & A
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.
My husband is on peritoneal dialysis after losing his kidney function, and almost his life, in a scleroderma renal crisis 18 months ago. He is reluctant to consider a kidney transplant. What is his life expectancy on dialysis? There is no lung involvement that we know of yet, but esophogus, stomach, digestion all affected.
My friend was diagnosed with scleraderma at age 13 and is now 36. She has had numerous operations over the years and on 4/21/06 underwent surgery that was to remove the Achilles tendon due to an infection that had gone bad (not healed correctly). Since that time she is now on life support (as of yesterday) due to respiratory arrest. She has fluid in her lungs and also a pooling of blood in her lower back. They are currently trying to figure out what type of infection she has to get her on the correct antibiotics, to do that they are going to remove some of the fluid from her lungs and test it. After the surgery she lost all appetite which has been common in her previous surgeries from the pain medicines(currently demerol). She is now considered malnourished because of that. She is probably right about 100 lbs, 5’6″. She has been on low dose prednisone for the past 20 years. My question is what can be the cause of her respiratory malfunctions. I know that you cannot diagnos but possibly give us another direction to look.
I’ve been ill for 8 months. It all started with numbness in hands and feet and weakness in forearm muscles and calves. Then joint pain in thumbs and toes and then knees. Lots of Crepitus and tendon pops. After a couple months the numbness went away. But the joints remain sore and “crunchy” to this day and maybe they’re getting a litle worse. Joint pain comes and goes. The skin around my eyes and forehead feels tight and there is a bumpy texture to the skin in this area. Heart palpitations come and go. Always have irritation in the chest with a dry cough. I’ve had pretty thourough blood work. All negative accept elevated Ana on the first two tests 6 weeks into my ordeal. 640 and 160 speckeled and diffuse. Then 3 subsequent tests have been negative. I’ve read everything there is to say about rheumatic disease. I don’t fit any particular disease, and I have fear that it could be early diffuse scleroderma, even though I would not be typical at all. I purchased a microscope at radio shack, and decided to take a look at my nailfold capillaries. Well of course I’m no expert but there are some very large capillaries mixed in with mostly thin ones. Also there are some tortuous ones too. Since my symptoms have not gone away for 8 months, I really think I have a CTD. My local rheumatologist looked at the capillaries with a otoscope and said…”yeah they’re dilated but nothing significant.” I’ve learned that many mistakes are made and to get a second opinion. Where can I go to get a thourough capillary exam, by an expert. Judging the results appears to be for experts only. And any comments on my saga are always welcome!!