Scleroderma Support Group

Scleroderma is a rare, chronic disease characterized by excessive deposits of collagen. Scleroderma affects the skin, and in more serious cases it can affect the blood vessels and internal organs. The most evident symptom is the hardening of the skin and associated scarring.

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Skin & Hair
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CREST

deleted_user
deleted_user
Anyone out there been diagnosed with CREST (limited schleroderma) and want to share any thoughts or advice? I've been diagnosed with MCTD and possibly 2 or 3 of the 5 CREST factors in late May 2010. Have been back to the rheumatologist 3 times since than and all he says is to stay on the placquenil. At the last visit a month ago I told him the tightness and feeling of lumpy tissue under the skin of my forearms, chest and face was greatly concerning me. Same with the stringly painful tissuein my upper arms and neck. We took more blood and I go back next Wednesday after another month of worrying. I have some other issues but wonder if I'm worrying too much about disfigurement or organ involvement. His nonchalant attitude that it's "just CREST" and a "mild case of MCTD" kind of rattles me. I didn't know CREST was limited schleroderma until I looked it up online after he told me not to pay attention to blogs and websites on the internet. Thanks for any info and God bless.
dawnc4t
dawnc4t
I was wondering if anyone had developed dark skin patches on the face .I can't be in strong sun as it really affects me badly .I have photosensitivity and it I get some awful headaches at times bad migranes in fact .I checked with the optamologist and she says I was fine regards any cause from the plaquenil ..I wish I knew for definite what the other connective tissues disease is apart from the sjs .I saw sle on my chart which I believe is crest which they mentioned to me at one time
heliconia
heliconia
Here is a good site discussing the diagnostic criteria for all of these autoimmune diseases. http://www.medicalcriteria.com/criteria/reu_mctd.htm

This explains that with MCTD you have an overlap of symptoms from some or all of the following: SLE (Lupus), Polymyositis and Scleroderma. Depending on which of the three your symptoms are most predominant in then you are labelled MCTD SLE like or whatever one it is.
deleted_user
deleted_user
I would be running to another Dr. With the tightening of the skin and lumps etc you should be on more than plaquinal. mixed connective disease is serious enough in itself also. It usually has overlaps of Lupus polymyositis sclerederma and often more. Raynauds sjogrens etc.. Its not "just crest" for most of us. hugs Marilyn
deleted_user
deleted_user
i have mctd crest scleroderma since seventeen i am now 51 it has been hard but i am a mother and wife. i
deleted_user
deleted_user
Hi what is MCTD? I have been diagnosed with limited scleroderma, I have only heard the crest numonic when i went to see my gp who used it to explain the different involvements ofthis, ie skin, osephogas etc I am in UK.. I am lucky so far my disease is very slow, the biggest problem for me is the acid problem and the problems this can cause your osophegas.. I have been pretty stable with very bad muskoskeletal problems and continued to work although get so so tired.. my skin is very dry and my feet and hands get very hot and stiff.. I have regular lung and heart tests and I have been asked to take a drug called methotrexate which I dont fancy.. I have just started prosak which has thrown my digestive problems into a crisis again but as I have felt very down for quite a while feel now I have started I need to continue.
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