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Doctors' Answers to "Frequently Asked Questions" - Scleroderma


These comments are made for the purpose of discussion and should NOT be used as recommendations for or against therapies or other treatments. An individual patient is always advised to consult their own physician.

[posted 01/23/2000]
Question: In the name of god

Dear sir

I am very glad that I can write to you.We have a patiant that the experts could not cure her.these are her conditions:
her skin especially skin of her fingers and neck became like wood and had no elasticity.her tongue has became smaller because of loosing its elasticity.when the weather is cold her skin become something like black color.all thing about her,including
hematology, blood biochemistry, urinalysis and hormone ,special biochemistry are normal.
All docters who see her said that she had skin rheumatism and wrote these medicins for her by a little diference(thay all said that this sickness was unknown and thay did not know the exact way for curing her):


1-prednisolone, tablet ,5 mg. three tablets during eating every day
2-Methotrexat "Ebewe" 2/5 mg. three tablets during eating only on friday
3-D-penicillamine 250mg .one tablet each day
4-nifedipine 1mg. one tablet each day
5- folic acid 1mg one tablet each day exept friday and thirsday
So I have some question and I hope you can help me.I will be very happiness if you help me:
What is your opinion about her sickness?Do you believe that her sickness is skin rheumatism?If so what about those medicine and their dosage?

with grate thanks
sincerely yours


Reza Akbari
Imam Sadegh university
Tehran ,Iran

Answer: Sounds like scleroderma which can be occasionally diagnosed by biopsy of the tissue. Hard to know if any treatment is effective for this disease. Steroids would clearly be used in the US, methotrexate and d-penicillamine would usually not unless there were renal or pulmonary involvement which you do not mention. She should have pulmonary function testing with diffusing capacity(CO) performed as a baseline and done every 3-4 months. These patients also sometimes belong to a group called CREST. This is a combination of tissue calcinosis, reynauds phenomenon, esophageal motility problems, scleroderma and telangiectastas. Treatment is usually frustrating in this type of disease. But, the drugs she is on are clearly in the right direction, I would ensure there are some markers for the severity of the disease to be able to decide in a few months if the treatment is having any effect.

[posted 11/26/1999]
Question: I have been dx'ed with MCTD and the Scleroderma is effecting my fingers, feet and lungs. Is the disease likely to go into remission even if it is advanced?

Answer: Not usually, but each case is individual and the speed of progression varies markedly.

Scleroderma
Question: My 33 year old son has scleroderma. He had surgery on his hand in 1996. The bones in his thumb were fused and other adjustments were made to increase mobility. At first things were much better, but now he has constant pain. He gets discouraged and depressed. How can we stop the pain?

Answer: I am not sure from your description as to the location of the pain. That is, is this a nerve compression problem, scarring from surgery, or changes due to scleroderma. A pain specialist or neurologist might be able to help you figure this one out.

Scleroderma
Question: Please send me information for the diagnosis of scleroderma.

Answer: Scleroderma is also referred to as sytemic sclerosis. This is a disease with unknown cause which is grouped in the category of connective tissue diseases. It is thought to be a disorder of the immune system "attacking" ones own connective tissues. It usually affects multiple organs in the body with thickening or fibrosis. Women are affected about three times more often than men and the disease is usually seen starting at age thirty-and then more frequently with age. The skin becomes thickened and leathery the Gl tract thickens and motility is a problem-especially the esophagus, thickening of the renal system can cause renal failuse, thickening of the lung tissue-respiratory difficulties, and thickening of the heart muscle-heart failure. The course of this disease varies a great deal. Some patients with only minor non-progressive problems, others with rapidly progressive multi-organ failure. Drugs don't seem especially effective although d-penicillamine has been used and steroids are sometimes used for treatment of a specific organ. Diagnosis of this disease is usually by the characteristic clinical picture, although biopsy is sometimes helpful.

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