I'm glad I could help and apologize for my delayed reply! We are assuming that my b-cells grew back healthy based on blood tests and the remission of my symptoms. I do not know if there is an absolute way to know for sure. But I need to do everything possible to avoid triggers that could provoke and reactivate the autoantibodies which is why I've made the choice not to get the vaccine (because it is incredibly immuno-stimulatory and could reverse the benefits from my 3-years of infusions). I feel like my remission is still very fragile (if that makes any sense)?!
My former MCAS specialist told me that he had many patients go into remission from IVIG. He viewed it as an immune-modulator that could tamp down the allergic reactions but he never used the word autoimmune with me (in regard to MCAS). I had three other autoimmune diagnoses in addition to the MCAS.
IVIG is one of the most helpful treatments I have ever seen and works for all types of immune system irregularities from immune deficiency to autoimmunity in both acute and chronic disorders. My doctors said that often the precise mechanism of why the IVIG works is not always known.
I apologize that I don't remember the formulas used to calculate IVIG dosing. Math is not my strong-suit and my doctors calculated the dosage that they felt was best for me (which actually ended up being much higher than I was able to tolerate so we ultimately went w/the dose that I tolerated which was 82 grams in a 3-day split dose).
I did not have any immune deficiency either. Which autoantibodies are you positive for? (and I apologize if you have just explained this)! I am talking to a few people at the moment who have asked me questions re: IVIG and I don't want to confuse anyone
I don't think a lawyer would be helpful at this stage unless you have exhausted all levels of insurance appeals. There are definitely situations that IVIG is prescribed off-label but it is nuanced. Please feel free to PM me if it would be helpful. It really depends on your diagnoses and type of insurance (and other factors).
I just Googled privigins and was not sure what it was (but it sounds like a specific brand of IVIG). The only brand of IVIG that I had for the entire two years was Gamunex. My MCAS doctor felt that I would not be allergic to Gamunex and he was correct. I think this is what you meant when you said "gamutex"?
I have not posted in those groups since 2018 but they literally talked about everything. I can give you the name of the two IVIG groups in a PM if it would be helpful. I don't want to post it publicly since they were private groups.