First, I want to say thank you to all you have responded! The support means a lot to me!
The doctor was wonderful! He was caring and treated me like a real person and was compassionate. He took the time to read my chart files and really listen to me.
He is the head sarcoid doc in the pulmonary clinic at a large hospital in Detroit. Apparently the top two sarcoid dr's are from Ohio and California. He stays in contact with them to keep up on the new treatments and such.
Remicade is a drug that has been around for a few years, about 8 I think and is primarily used in Crohn's and just recently in rheumatoid arthritis. There have been some very promising studies in its use for sarcoid. This doc was skeptical so he went to Ohio to talk with this other colleague who has been using it to treat his sarcoid patients.
This other doctor had him go talk to all of his patients that day to get there responses from the drug and almost all of them said it was wonderful and has greatly improved there lives! So, my doc decided to give it a try and has had great luck with it as well.
He confirmed that all my symptoms that I have had for the last 3 years or so have been from the sarc. He was amazed at the amount of swelling I still have even after I told him that the swelling in my joints and hands is down. He said the heart problems I have been having are from the sarc as well and is setting me up with an appt at there cardiac unit.
It will be a few weeks before I am able to begin treatment as they have to get prior authorization from the insurance as its very expensive. From my understanding, I will go for my first infusion, than again in 2 weeks, than once a month from there. The infusions are done at the hospital and can take several hours to complete.
This is a big gun drug and can have some serious side effects but I am hopeful that it can give me back some quality of life!
I feel as though a weight has been lifted from me now that I have a doctor who is going to help me. I am nervous about the treatments, what if I have a reaction to them or they don't work but I am also very excited. Please keep your fingers crossed this is what I have been looking for and will help me get well!
-------------------- Taking it one day at a time.....
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Re: Update from dr's appt!!!
