Janet
I, too, have had the pleasure of having sarcoidosis. Mine was diagnosed nearly 20 years ago and not much was known about it. Unfortunately, I took the Prednisone four different times. It does help, but has bad side effects. I gained weight (almost 40 lbs. each session), still had joint/muscle pain and swelling AND, although I'm sure I'll never have a doctor that will admit it, but after much reading I feel it set me up for Non-Hodgkins Lymphoma. Steroids do as much damage as they do good sometimes. Don't know the intensity of yours, but both of my lungs were full of nodules (excuse spelling - my 1/4th of one good brain cell has lost the ability to spell), involvement in spine and legs - especially knees. There are still a lot on unknowns, but I am curious what area you live in, if many pine trees are near by, your sex, race, body type, and age -- I was told this disease was found mostly in young, thin, black males, living in the southern part of the US. I did not fit many of the "norms" - I was mid 30's, heavy set, white female - only fit was I live in Louisiana near many pine trees. If you can get by without the steriods, please do so. I have found long, hot soaking baths help some. I have two friends that also have the "curse" and have similar experiences. One even had to have back surgery as his was so involved and wide spread. Not much help to you, unfortunately, but hang in there and never give up. If you need to see one or two more doctors, please do so - especially a Rheumatoligist (again not sure on spelling - my kids said I only had one good functioning brain cell when the lymphoma was diagnosed, and with all the chemo, medicines, and steriods, they have down graded me to 1/4 of one and slipping fast). There are support groups that might help you - if nothing else, to know others are going thru what you are and swap information. It also helps to keep a good and positive outlook and don't let it beat you. Good luck and God bless