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.

Last two years, my mother got scleroderma disease and I found that antioxidant therapy could help her get well. I need to share this experience and share the information. Please joy Report Abuse

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:)

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.