Guest guest Posted July 3, 2007 Report Share Posted July 3, 2007 Ken, Yes, the reply was from me. I'm always glad to add some understanding to what we are all going thru. Like you, I've had this disease for many years. I've actually had pulmonary and ocular sarcoidosis for 15 yrs. It went into remission for about 5 yrs, after a 5 yr process to get to that point. Then it came back with the systemic, neuro, pulm, ocular, and sarcoid induced arthritis. My doc decided to ignore me when I told him that the original Pulm said "don't let them put you back on prednisone- you are not a candidate because of the side-effects." However, Doc ego wouldn't listen-- so I went thru a year of hell trying to get the monster tamed. Fortunately, I had a GP that sent me to UC to Dr. Stanley Naguwa. He is an excellant Rheumatologist, and he was able to coordinate my care with the Neuro's, ENT's, Pulm. thru UCD. Even their pulm wanted me on prednisone, and wasn't willing to budge on his opinion. The Rheumi put me on imuran, liver went nuts, then he went to MTX, and added Plaquenil. I then found a clinical trial and was able to go to USC LA-- and participate in a Remicade trial. For me, it has been excellant - stopping the progession of the pulm disease and making it so that the arthritic pain has greatly diminished, at least for 3/4 weeks. My "inside the bone" pain has also greatly diminished. For several members, Remicade darn near killed them with allergic reactions. So it's truly what works for you. The "cocktail" needs to be taylored to your needs. I know the "left-side" story-- it is my left frontal lobe, where all the "executive" functions take place, our problem solving skills, our cognition, our short-term memory, our personality and sexuality- are all functions of this part of the brain. The neuropsych tests confirmed by the fact that those tests require a different section of the brain to function to complete the tests-- what areas of the brain have been effected by the TIA's or vasculitis. As far as how to convince the MD's- take these articles in-- the ones in our ARCHIVES and LINKS section. Order a copy of brochure from FSR--FOUNDATION FOR SARCOIDOSIS RESEARCH. WWW.STOPSARCOIDOSIS.ORG. I have alot of info and articles written by Dr. Om Sharma-- the head of Pulm at USC LA-- he is the #2 world specialist in sarcoidosis. If you are in San Diego, it may be worth making an appt with him-- he's only an hour drive away for you. (On a good day.) If your MD's won't work with you, and go over the articles-- find someone that will. We are only an "orpan" disease because they've not updated themself from the 1953 Merck Manual that says this is a benign disease that needs no treatment. Hope this helps, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.