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Is there anyone who suffers from severe sarcoidosis?If so have you found anything that helps besides pain meds |
I have sarcoidosis on my lung post and its spreading and growing.So far i have 4 masses.It affects me every single day.I cant find anything to help me.I"ve tried prednisone,and it didnt work.Pain meds help but dont control the pain very well or all of the other symptoms i have.Its affecting my heart and my doctor wants to put me on some kind of immune pills that will slow down my immune system therefore slowing down the growth of the disease.I'm tired of trying new things only to be let down when they dont work, I also suffer from sarcoidosis. Where is yours? Mine is not in the lungs, but in between the heart and lungs. I have a very large mass, that is putting pressure on the trachia now. I take large doses of prednisone. Taking that for two years now, with terrible side effects, like swelling..water retention,high blood pressure,and weight gain. I havent experienced pain from it though. I do have a sarcoid lesion on my arm too. What kind of pain are you experiencing from your sarcoid? Have you tried anti inflammatory meds? I have been living with sarcoidosis for ten yrs. I was evaluated for a lung transplant and it was decided that I could best be treated with medication. I have been taking 200mg of hydroxychloroquine 2x a day. It seems to keep me in remission. Report It I do. I was diagnosed 5 yrs ago with it. There are some different treatment drugs out there but depends upon your symptoms. Dr wont allow me pain meds cause of heart trouble. I find nothing helps now as many symptoms as I have developed now. but go to webmd.com and see what meds they suggest may help. also look in their clinical trials to see whats offered. |
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