CREST/Scleroderma?

I have been diagnosed with Crest/Scleroderma. I am only being treated for the main symptom which is Pulmonary Arterial Hypertension. My physician is a Pulmonary specialist and she tells me there isn't much they can do for Scleroderma so we treat the symptoms. She says Scleroderma won't kill me but Pulmonary Hypertension will and that is why I'm taking so many high pressure meds. Does this seem right? Is Scleroderma completely incurable? I have diffuse and limited, but most of the damage is internal. I am in phase IV. I seem to have all 5 of the CREST disorders but question the Scleroderma. I have made an appointment with a Rheumotologist but can't be seen before August 1. According to the research I've done, my body is manufacturing too much collegan. Should I avoid collegan additives in my vitamins?

i wish i could tell you but i don't think anyone here should even attempt to answer your questions.

this is a serious condition and you should ask your doctor.

sorry.

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CREST is a type of Scleroderma. The Pulmonary Arterial Hypertension would be a different condition altogether; unrelated to the CREST Scleroderma. By reading what you have written the Pulmonary specialist would not be right to treat your CREST Scleroderma.

Now, with a diagnosis of CREST the prognosis is usually very good. Treatment with Minocycline, oral Trental and calcium channel blockers are sometimes used. A recent advance is the use of Diovan (valsartan) which is helpful for the symptoms caused by Raynaud's phenomenon.

I would go ahead and avoid extra collagen as it wouldn't hurt, but I would go ahead and start researching which vitamins and/or minerals would be beneficial to both the CREST and PAH. There may even be places online for either and/or both conditions that you can join an online group and talk to others about the disease and their experiences. And finally, I know stress is not helpful to anyone with an autoimmune disease to do your best to take a deep breath (figure of speech) and take it one day at a time. And, be persistent with the Dr to see if you can get in sooner.

To be Honest, I cannot say I really know alot about it:( I would try my best to see another doctor soon as you can rather then wait!! Good Luck to you:)