Hi Ginger - really praying that you get the insurance approval for the IVIG, and that it helps you.
Thanks
@justy and I really appreciate it.
I'm interested to know if your MCAS Dr thinks it will help the MCAS as well as everything else? I have just started the low dose sub Q GG as I had become more or less bedbound again. I am sure it keeps me out of being bedbound, but not sure how this is working. I had to stop for a while as 8 months in to twice weekly injections I had an atypical anaphylaxis twice to one particular batch and it scared me off for a while, but im so desperate to at least be back to gentle pottering a little in the house that ive tried it again. new batch was OK so far at tiny doses.
My MCAS doc does think that it could potentially help my MCAS and ideally bring my immune system back to the center or normalize it. I have several autoimmune markers and autoantibodies now (besides MCAS/allergic reactions) but also still have some abnormal viral titers and immune deficiencies. I will be doing it at the infusion center at his hospital where the nurses are specially trained to administer IVIG to his MCAS patients with a super slow infusion rate (like 8-10 hours) and start with the lowest dose and slowly build to the autoimmune dose. They know how to do the pre-meds and you can even bring your own meds since people with MCAS usually only tolerate certain brands. He is working with my main doc and it is like the dream team if only insurance will approve me.
I remember when you had the atypical anaphylaxis, which sounded scary, and am glad your new batch is better. I am not scared at all to try it at his infusion center but am too high of an anaphylaxis risk to do it at home. Although, he said in reality, someone with MCAS is no bigger of an ANA risk than someone without it as long as the infusion speed is very slow. It really remains unclear how the autoimmune dosing works but the theory is that the new antibodies replace the bad autoantibodies that I have? I am the last person to ask about anything scientific LOL. (And we did not talk about SCIG which may be totally different.)
My dream is that if the attack on my phrenic nerve and breathing is either viral or autoimmune, that it will repair it back to normal or at least improve it a tiny bit and after a while on IVIG, I want to try RTX (also at trained infusion center and nothing at home!)
Its annoying that it is so expensive in the US. It is possible to get it in Europe at a fraction of the cost.
IVIG is called "Liquid Gold" here and my co-pay alone will still be thousands of dollars but without the insurance, it is not an option for me. It's the true downfall of our system b/c I have my ME/CFS doc, MCAS doc, cardio, etc, all saying I need IVIG and submitting all the proper blood work and paperwork and insurance can still deny me.
Yes it is very costly and they don't like to pay because they know it could be life long and cost them BIG $$$ I know you wouldn't give up, and heck maybe they will approve quick !
I don't think it will be lifelong although if it worked, I would be willing to do it lifelong. And you know me too well, Bill, that I will not be giving up! I already know they will not approve it quickly but hoping by the end of June?
As for us several different doctors have now told us this will not work for him ( but I am still not convinced ! ) . So we have given up the IVIG fight for now .
I am not convinced either and think it could very well help your son but insurance just does not want to pay. I am amazed when I hear of so many people getting it. A close friend of mine was just approved after eight months of fighting for it so I know I might be in for the long haul...
