Sarcoidosis Support Group

HI: I'm a new member. I'm fortunate in that I did not get sarcoid (to my knowledge) until I was 59 years old. I have had, however, low thyroid for at least ten years, and wonder if there is any connection. (Is there any other "oid" disease I can get that leaves you feeling like a blob?!) I have had a dry cough for at least three years. I have used spike lavender for that, and it does help. (5 drops of spike lavender essential oil in a teaspoon of grapeseed oil - I make it in a roller bottle and roll it on the base of my throat.) I had no idea that I had sarcoid and just thought I had congestion at the base of my throat. I have also had mental blurriness for several years, can't think of any other way to describe it. My brain just doesn't work as well as it used to. My eyes have been quite dry for several years - I have found Theratears supplements (not drops) to really help with that. In the fall I started noticing that I can not draw breaths as deep as previously. I do deep belly breathing; so this was strange - but since I mostly noticed it when exercising and it was fairly mild, I did not pay that much attention to it. I also had been having frequent headaches at the base of my skull. My husband had noticed for the past few years that I seem to tire more easily than I used to and than he thought was normal. Then in April, I got a fever which lasted for over two weeks. So, finally, I went to the doctor! He did an x-ray and found sarcoidosis in my lungs. How did that get in there!?! So I have been working with a pulmonologist. But it seems to me that he talks with me for about 15 minutes, tells me they don't know much about sarcoid, and sends a bill for $500. Fortunately, my insurance pays it. I started on prednisone at 40 mg/day. After about two or three weeks, the dose was lowered to 30 mg. After a few more weeks, I started tapering to an every other day dose, first 30-20 for a week, then 30-10 for a week, then 30-0 for a week, then 20-0, which is what I am currently on. My symptoms started returning pretty soon after I started tapering. Today I have headaches, fever, a little cough, fatigue, body aches. I am considering going to the Cleveland Clinic Center for Sarcoidosis - or Johns Hopkins. Johns Hopkins believes in using integrative medicine, which appeals to me. Use everything and anything that works without hurting you, is my philosophy. Questions: 1.) Has anyone gone to the Cleveland Clinic - or Johns Hopkins? 2.) How quickly do you usually taper from prednisone? Is going down by 10 mg at a time too much?
Sorry for the long entry. Thanks to everyone for being here, and best wishes for keeping up a positive frame of mind!
Posted on 08/13/09, 01:08 pm