Log: MCAS with Primary Immunodeficiency

[Blake2e]

Will you be stopping Rituximab or continuing some level of maintenance infusions?

Likely not, as with IgE down so much the sensitivity of MCAS is still much less than what it used be. Main problem is that I now react to literally everything, so while that drastic cut in sensitivity helps, that 20% or of sensitivity still present is still wreaking havoc. When its under 10% its extremely manageable for me.

I just Googled Tofacitinab (Xeljanz) and it sounds dangerous! I couldn't quite figure out, is it an infusion or oral pill or something else?

It is definitely takes a bigger toll on the immune system. Mainly pill, but sometimes via infusion depending on case.

Do you have problems with absorption of meds, supplements/ vitamins, etc? Meaning do you have to take supplements or higher doses of certain things just to maintain a normal levels on blood tests? With most meds, I take tiny micro doses compared to the normal person but now with Armour Thyroid and certain supplements like Vit D, I have to take a much bigger dose but still not maintaining normal level on blood tests. Also with Potassium, B-12, Folate, Iron, etc, I have to supplement to barely maintain a normal level on tests and we think I have a malabsorption issue from MCAS. Do you have this, too?

Well the drug resistance I've mentioned a few times is pretty much that. And I've confirmed with blood tests that I indeed am not absorbing drugs (EDIT: to add, this happens with subcutanous and intramuscular, and maybe with infusions as well hence my issue with Ritux now). I have to take massive amounts of a drug for them to work and even then they still stop working.

Only deficiency I have is folate b/c of my MTHFR homozygous SNP that impairs metabolism of it, which I also conformed with blood tests. Simply adding folate, or methylfolate, to diet does nothing for me in my everyday life nor does it change lab results.


Edit: added a little above




***EDIT2: I migrated to the private forums members only and will continue my log there. Hopefully I'll see some of ya'll there!

 

[btdt]

I have a family member who uses these type of drugs for an immune disorder and repeatedly has to switch drugs as they so far eventually stop working.
I came today to post a link and found I posted it already on a different page ... but still think it may have something helpful so putting it here... hope it is useful
https://www.liebertpub.com/doi/full/10.1089/eco.2017.0003

here is a bit from the link
"
Based on the findings in those other illnesses, it is likely there are subgroups of patients with MCS. Testing for the autoantibodies seen in other respiratory illnesses might be productive in a potential autoimmune subgroup of patients with MCS, especially female patients with respiratory symptoms and HT-related autoantibodies or ANA. Among the other tests that may be useful in MCS are included the BAT and LTT, which can measure in vitro reactivity to chemicals.
As for the limitations of this review, there was not enough time to discuss all the possibly pertinent research on other hypersensitivity illnesses, and there was a paucity of research on MCS with which to compare it. Many of the markers found in other hypersensitivity illnesses have not yet been tested in MCS except in individual patients by their doctors. In addition, often in MCS research and sometimes in CFS research, when markers have been tested, only one team has tested them, making it difficult to say for certain whether they represent most patients or just that cohort due to the methods that were used, including exclusionary criteria.
"
I am sorry I could not catch up I don't feel well enough to do that now.. peace all