I'm also a patient of your doctor, and have autoimmune MCAS and A1 and M4 antibodies, so I might actually be more similar to you. I had immunodeficiency also, and started at .75g/kg IVIG every 3 weeks. For immunodeficiency alone, I believe the dosing is closer to .4g/kg every 3-4 weeks.
We decided to try to raise the dose to try to attack the autoimmunity, so I'm currently getting the equivalent of 1.5g/kg every 4 weeks, like the patient in the attached case study, which discusses IVIG used gor autoimmunity. My other doctor saw Dr. Weinstock present this case at a recent conference and was very impressed with his talk and that I was already on the protocol.
I've been told 70% of the IVIG in the US is prescribed for autoimmunity.
@Learner1 , ah, I'm so happy to know you. It puts my mind at ease just having a comparison. Thanks for responding.
I was diagnosed with CVID and have been on 10 grams a week subcutaneous for the last 8 months (it's the equivalent of 0.9g/kg every 4 weeks). I was half that dose for two years before that (10g every week, which worked out to 0.45g/kg/month). I'm happy to know that my dosing thus far is similar to your examples.
Is your current dose of 1.5g/kg every 4 weeks for IVIG (not subq)? That's higher than he wants me to go, which, again, makes me feel better about the whole thing because I want to be sure mine isn't
too high. My order is to change from subq to IV at 35g every 3 weeks (which works out to 1.05g/kg/month -- only a tiny increase from my SCIG dose, but, being that it's IV, it's more potent, I guess).
The thing is, we are working up to that dosage over FOUR months. Starting at 2.5g every week for a month, then 5 grams, then 7.5 grams every 2 weeks, then 10 grams every 2 weeks and, eventually, I hope, 35g every 3 week. The big problem is, I've only had one 2.5g IV treatment (at a slower rate than I've ever heard of others going) and I had a horrible 2-day migraine. With subq at 10grams, I never got any headaches. It actually energized me. I can't imagine how bad it'll get as we raise the dose. Plus, with the IVIG, I have to deal with a nurse (which was a very bad experience this first time).
Can you tell me how you know for sure that your MCAS is autoimmune in nature? That might make me feel more at ease. I have had my thyroid ablated with radiation and my endo said it's autoimmune, but I never actually had high thyroid antibodies (until I started gammaglobulin, which is a false positive, I assume).
Thanks so much for the links, very helpful. Are you in California?