Are you able to sum up how useful ivig was to you in the end now that it's 5 years on and whether you feel it was instrumental in getting you to where you are now.
I am happy to summarize my experience with IVIG but wasn't able to re-read this thread right now (so please let me know if there was anything specific from earlier in the thread that you wanted me to address).
Overall, IVIG was incredibly helpful for me and it was the combination of high dose IVIG and Rituximab that led to my remission. Each played a critical role in my case and I would not be where I am today without each of them (and the sequence that I did them).
I did IVIG from approx July 2016 to July 2018 and when I wrote the last post in this thread (in 2016), I was still very new and early to IVIG and still had a LOT to learn about it. It is currently approx four years since my last IVIG infusion (in case that makes the time-frame more clear)?
Also are you able to tell us your level of function now Vs what it was in 2016?
My level of functioning when I started IVIG was almost non-existent. I could not stand or walk without a wheelchair for more than about 30 to 60 seconds, I could not drive, and I required assistance from family, friends, and a paid caregiver throughout the week. I had extreme shortness of breath, chest pain, severe muscle weakness, uncontrolled POTS, and uncontrolled MCAS with constant anaphylaxis reactions. I had reached the point of being allergic to all food but water and ended up in the hospital.
My level of functioning now is that I can walk unlimited distance (several miles) as long as it is on a flat surface. I still have some difficulty with stairs but I can climb one flight of stairs if there is no other option (vs. for many years, I could not climb one single stair/step). I no longer require assistance from anyone and I can take care of everything at home that I need by myself and I can drive.
My muscle strength and my breathing are completely normal again and once this went into remission (from the IVIG & Rituximab), the muscle weakness never returned. In my case, this weakness was from Lambert Eaton Syndrome (LEMS) and ME/CFS turned out not to be my diagnosis (even though I also had severe POTS & MCAS which commonly occur with ME/CFS).
And did the ivig eventually fully resolve your mcas or did you continue to take various mcas medications to control it?
For MCAS, I still take Ketotifen daily (1 mg) vs. I used to take 4 mg. I no longer take any MCAS meds except the Ketotifen (vs. I used to take 8-9 MCAS meds just to eat a few bites of food without anaphylaxis). Prior to IVIG, I was receiving IV Benadryl and then Benadryl injections. I still carry an EpiPen in my purse and wear a Medic Alert bracelet (for life) and will always be considered an anaphylaxis risk.
I avoid all dyes (in food & meds) and everything I ingest is dye-free. I also still carry Atarax (which is similar to Benadryl) as my "rescue med" but I very rarely need it (maybe once a month at the most)? If I am doing something that could trigger an allergic reaction (like dental work), then I will take the Atarax as a pre-med to be safe. I no longer take Zyrtec & Pepcid (my prior H1 & H2 blockers) b/c I don't need them unless I'm taking Zyrtec for regular allergies (not MCAS) but this is also rare at present.
I currently take 6 prescriptions daily (for different things) but the only one for MCAS is the Ketotifen. I debate (with myself) if taking 6 meds (plus 5-6 supplements) to maintain this level of functioning is truly considered "remission" (because I took zero meds before I got sick). But at this point, I use the word "remission" for lack of a better word and will never use the word "cure".
I will always have to be very careful and I feel like my remission is fragile. I avoid anything that is immuno-stimulatory and could re-trigger my MCAS, POTS, LEMS and other autoimmunity that is in remission. I also continue to have endocrine issues that I carefully manage (with thyroid medication & hydrocortisone) and I continue to take Atenolol for POTS.
I'm considering sub q ivig for very low igm and low igg.
I never had low IgM or IgG and my IgM was actually very elevated to the point that my doctor ran some tests to make sure that I did not have MGUS or cancer. Luckily, I did not and we suspect that the elevated IgM was all part of the autoimmunity in my case. So I never did SubQ IVIG (SCIG) b/c it would not have been a high enough dose for autoimmunity (in my case).
Edited to Add: In case it is helpful, the brand of IVIG that I used was Gamunex.