Thanks
@justy and
@Hip and I am going to research this as soon as I am able and will be seeing my mast cell doctor very soon (a few days after IVIG #3) and will ask him what the mechanism is that put this in remission. Last night I went out to dinner with my husband at a regular restaurant and had my food cooked with regular spices including black pepper and even had a piece of sourdough bread and no reactions to anything.
It is mind-boggling b/c last summer I was having anaphylaxis to all food but water and ended up in hospital on IV Benadryl. Then for about six months all I could eat was lamb, rice and sweet potato taking 6-7 meds pre-food plus Cortef. Then I slowly added low histamine foods to where I had more variety but I still had unpredictable reactions to foods and smells resulting in having to take my rescue med (Atarax) at least 3-4 times a month. But at present it is gone. I know tomorrow it could be back but at present it is gone.
Great news!! Dr Afrin talks about this in his book, but then dismisses it as a treatment as he says it has to be taken forever and is too costly.
I am embarrassed to say that I still have not read Dr. Afrin's book! But am curious, since you read it, did Dr. Afrin actually say that IVIG does not work as a treatment for MCAS or did he say that it can work but dismissed it b/c he feels a patient would have to do it forever and b/c it is too costly? No worries if you do not remember. When my doctor consulted with Dr. Afrin re: my case last summer, he (Afrin) felt I might need to have a PICC line with IV Benadryl for the rest of my life and never mentioned IVIG as an option.
I don't know how it works though - in fact they don't really know how it works for autoimmune issues (I think). I wonder if
@Jonathan Edwards might be able to say something about this?
Agreed and no one seems to really know how it works for autoimmune diseases but I suspect it is modulating my immune system back to the center (away from the crazy allergic reactions) and hopefully it is lowering or reducing the level of auto-antibodies. I have not re-tested them yet but plan to in future. The crazy thing is that I am nowhere near the autoimmune dose for my weight which starts around 55 grams minimum. But historically I do better with low doses of things so maybe this is the same thing? I've done two IVIG's at 24 grams and #3 will be 36 grams.
For me the low dose SCIG is not enough to affect the MCAS - the ketotifen is helping, but often I react to the SCIG with feeling awful for a few hours after taking it - dizzy, sweaty, low BP etc. I keep up with it though because it helps me function better - without it I am bedbound and with it I can be up and about and do more in the day. My Dr doesn't know why this works for me in this way or the mechanism of action (perhaps it IS helping my MCAS fatigue?), but as it does do something positive we keep on with it.
Have you thought about trying IVIG vs. SCIG or is this not an option in the UK and you'd have to go to Belgium to try it? I don't really have what I would label as "fatigue" and for me the problem is muscle weakness and dyspnea which prevent me from walking. I have noticed an increase in arm strength (while seated) from IVIG and an increase in my very low BP but this lasts for about two weeks and by the third week it is gone. It has not yet improved my autonomic or breathing issues but I never dreamed it would put the MCAS into remission so I am hopeful that as I increase the dose, it will lower the autoantibody and then I will be allowed to try RTX to really wipe out the antibody.
No clear ideas as to why intravenous immunoglobulin has put your mast cell activation syndrome into remission,... but maybe you have made medical history.
I doubt I have made medical history but I do wonder how common vs. rare this is?
Although since viral, fungal and bacterial infections can all cause mast cell activation, one could speculate that you may have had some chronic infection underpinning your MCAS, which the IVIG wiped out, or brought under control. But that is just my uneducated guess, as I know next to nothing about MCAS.
Anything is possible and I am certain that toxic mold exposure was the final trigger (but not the only trigger) of my MCAS. I feel that somehow the IVIG has modulated my immune system back to the center and away from the mold reaction, away from viruses, and most crucial, away from the crazy allergic reactions to food. I am still avoiding dyes and preservatives and the absolute highest histamine offenders to be safe but for all I know, even those might be okay now?
I don't feel that it has yet gotten the dysautonomia or autoantibodies under control which I suspect are weakening my muscles and breathing. If it could do that, it would be a dream come true. Am supposed to see my Neuro after IVIG #3 and if she works in conjunction with my ME/CFS and MCAS docs, am hoping that my insurance will allow me to increase to the higher dose. I really want the opportunity to try the autoimmune dosing in the future.