Thanks junkcrap50,
What should I get my doctor to prescribe for me? How much and when should I take it? And what about all the literature out there that state that quercetin works better than cromolyn?
Well, the oral cromolyn does not work systemically, I believe. It only works on the GI, which can still be a major source of mast cell reaction & inflammation (as there are a lot of mast cells in the gut). But it is unlikely to open your nose up if you have mast cell reaction in your nose (ie stuffy nose, trouble breathing through it, etc). So, if you have MCAS + nose issues, you'd need nasal cromolyn. Same with eyes - cromolyn eye drops. Etc. I still think it's worth trying regardless as MCAS treatment is kind of trying a whole bunch of things and finding what works for you. But if you have a lot of mast cell reactions during/after eating, the oral cromolyn will likely help a lot. For example, it has cured my parent's 5 year IBS-D. In my other parent, while eating, he/she no longer starts sweating profusely, gets very red in the face and neck, and feels overall better. If my parent with IBS-D doesn't take the oral cromolyn far enough before meals/dinner, it doesn't work.
I believe the drug info included in my oral cromolyn recommends 4 ampules up to 3x/day, 30 mins before meals, on empty stomach. You can start with taking less say 2 ampules before meals, and build up to 4. Also, I think it's okay to take more than 4 ampules at a time, but I'd double check online the max doses. So I would have the doctor write a script for that: "Cromolyn Sodium, Oral Solution Concentrate, 4 ampules, TID, taken in water, taken 30 minutes before meals."
As for the literature and Quercetin, I don't know. That may work more systemically than locally in the gut. I've gotten tired of trying only supplements for many other things and not seeing results. I would rather try the more powerful prescription drugs. But if you have confirmed MCAS, I'd take all / as many things as I could for it, including the Quercetin. But my parent(s) and I do take PEA (
Palmitoylethanolamide) for MCAS, which is a supplement, and I think it works a bit. I would also recommend trying
Ketotifin, a mast cell stabilizer, which is very helpful and a "game-changer" for many people.
I have very mild MCAS. I didn't see any benefit from 3 months of oral cromolyn, so I stopped it. My left over medications my parents tried and had success. But I take Ketotifin and PEA. I still treat it as mast cells can drive overall inflammation, and I have wide spread inflammation that I've been tring to reduce.