i have sarcoidosis which is a lung problem?

Question

i would like to know if anyone out there has sarcoidosis.its kicked in big time and my dr. says there is nothing he can do for me.i would like to know what your dr. does for you if anything.i was told theres nothing anyone can do for me.what do you do for it.oh and there is no such thing boarderline.you either have it or you dont .i had someone tell me she was boarderline.

thank you
kathy

Answer 1

YOW! I was told I had sarcoid also! Turns out I didn't, but at least my lung biopsy confirmed I didn't have emphysema either, and the results of the biopsy were mixed. For the sarcoid I was put on Prednisone, a steroid with nasty side effects, such as thinned skin, distended abdomin along with un-deserved weight gain and redistribution of limb fat to the abdomin - moon face, eventually cataracts (young age is no defense), and many others. However, the Prednisone is supposed to combat the inflammation of Sarcoid, thus helping you breathe. Other organs can be affected, including the brain, but usually is the lungs. I really can empathize with you. HOWEVER, I must tell you that 2 years after MT SINAI in NYC, I went to Yale Medical, and then Mayo Clinic - both said no to sarcoid. And at Mayo I found out my heart valve (Mitral) was worse than I previously knew, that it could have cause my whole lung condition. If you haven't had a second opinion, PLEASE DO! When I was treated for Sarcoid, I was on the Prednisone, then also Plaquenil (hydroxichlorquine) which is used for Lupus and Malaria. Was never put on Methodrex..something, but that is a chemo drug. I never got better from these, even on oxygen therapy. If you do have Sarcoid, it is possible it will go away in months or a year or two. When I was diagnosed the cause was not identified, but I think it has been proved to be an autoimmune disease. Good luck to you, Kathy. Email me if you want.

Answer 2

Hi Kathy, you are only the second person I have ever heard of having this lung disease. My friend was diagnosed about 7 years ago, and it came on fast and furious. She was on many meds including high dosage of predezone and some chemo as well. She is feeling ok most days, but has never been able to return to work. Hope you never develope a serious case as this. Take care.

Answer 3

Sorry to hear, baby. Hope you live as long and as healthily as Bernie Mack, the comic and actor. http://www.google.com/search?hl=en&safe=off&sa=X&oi=spell&resnum=0&ct=result&cd=1&q=bernie+mack+sarcoidosis&spell=1
I'll say a prayer for you! Be blessed.
No, I do not know anyone with the disorder. Have faith
that you can be healed and healthy, okay? Okay.

P.S. Angie Stone (soul singer) is on VH-1's Celebrity Fit Club and she just said that she overcame Sarcidosis. She was on prednisone. Maybe she and Bernie can give you motivation and inspiration, huh?
http://www.vh1.com/shows/dyn/celebrity_fit_club/series.jhtml