Hi @Aerose91 ,
I was diagnosed with mcas. However I am now questioning that diagnosis because after about 5 years I am no where near where I was then. I do still take loritadine and ranitidine. However, some of the other meds didn't seem to work for me. Which is making me question the diagnosis.
At one point I could only eat 6 foods and was needing to live in a bubble because scents and environmental stuff was causing me to break out in hives. I spent a long time detoxifying my environment and trying to let my body heal before I started working foods back in. When I did it was the smallest amount, one at a time. In case I had a reaction.
I still can't eat gluten. But I've been able to work most other things back in. I also work really hard at keeping my inflammation down if I can. I also did a major gut cleanse recently and have noticed more improvements with that.
So I'm slowly digging out of the hole... Again not sure if I actually had mcas but was diagnosed with it.
Sorry, I did not see this thread or get an e-mail alert that I was tagged! I developed severe MCAS in 2015 which ultimately resulted in me having anaphylaxis to all food but water and being hospitalized. I was on IV Benadryl and then Benadryl injections and a boat-load of meds which I had to take 30 min before eating about 4-5 foods. I also had severe reactions to odors/smells.
I believe that I had sub-clinical MCAS for most of my life and matched on about 35+ of the 50 symptoms listed by the Masto Society (even obscure things like being allergic to aspirin, being allergic to Yellow Dye #5, having unexplained bruises plus all the major symptoms). We believe the final trigger to my immune system was several years of toxic mold exposure in my former rental as @Wonkmonk mentioned.
Once I started high-dose IVIG, the MCAS went into remission. It went into remission from IVIG alone, almost a year prior to starting Rituximab. The Ritux put the rest of my symptoms into remission but it was the IVIG alone that put the MCAS into remission. My MCAS doctor said that IVIG put many of his prior patients into remission so he was not at all surprised by it (even though I was)!
I stopped my entire MCAS med regime and no longer take any MCAS meds 30 min prior to eating. Because I am now done with IVIG and in the process of tapering off Cortef, I continue to take one set of MCAS meds in the evening to be safe. One set for me used to be nine different meds but it is now four: Zyrtec, 1/2 Pepcid, Ketotifen, and Quercetin. I've had days that I have not taken the set of 4 meds (at all) and had absolutely no problems. But b/c of the Cortef taper and stopping IVIG, I am continuing to take them and see no down-side (and prefer to be safe than sorry).
I continue to avoid the foods and meds that I was allergic to life-long, and my MCAS doctor told me that for as long as I live, I should avoid iodine based IV contrast dyes. I also continue to avoid FD&C food dyes (especially Yellow #5 or "Tartrazine" which caused my absolute worst anaphylaxis reaction). I have no other food restrictions but continue to limit the highest histamine food offenders. If I was at a special event and they were served, I can eat them, but in general, I prefer not to put the extra stress on my body if not needed.
So while I am cautious b/c I never want to re-live the horror of 2015, I consider myself to be in remission from MCAS. I will never say "cured" b/c I believe it is possible for my symptoms and allergic reactions to come back, especially if I were to be exposed to toxic mold again in the future.
I did lots of treatments, but yes, the worst of the MCAS for me was in 2007-2009. I fully crashed in late 2009 but the MCAS reactions were milder at that point than the other MECFS symptoms, long before I’d had any of the thousands of treatments I eventually tried.
So, I do tend to think relapse and remission is normal and that it is possible for severe flares to reverse without aggressive treatment as well.
I can PM you but I have confirmed (since writing that prior post) that my MCAS doctor is no longer taking new patients. He works at three hospitals and is planning to retire in the next year (which is a bummer). I tried without success to refer other patients to him but he is no longer seeing new patients at all