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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Polar opposite reactions to what's normally good for MCAS sufferers http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1397975002 Message started by LiveHive on 04/19/14 at 19:23:22

Title: Polar opposite reactions to what's normally good for MCAS sufferers
Post by LiveHive on 04/19/14 at 19:23:22

Hi everyone,

First, I'm new. I plan to write some more detail for anyone interested in my story in the coming days, but I just want to start by asking a question. I believe I could have MCAS. I have many of the hallmark symptoms and clearly struggle with some kind of histamine issue -- I've had allergies all my life, and began getting chronic urticaria in my teens.

The real kicker is most the of stuff you guys are using to treat are punishers for me. For example, I can't take anti-histamines. I actually break out in more hives when I do. I've taken Allegra, Benadryl and Zyrtec with the same result. Covered neck to toe in welts.

Second, Quercetin is another no-no for me. Strangely, it causes my skin to become very thin, transparent looking and feeling, and weak -- easily breaking open with the slightest of scratches, like cutting myself on cardboard box edges.

Choline is another one. Same result as Quercetin.

So, what gives? If I have the same issue or something in the ballpark as a lot of you guys, why am I reacting to the opposite of what's supposed to help me. Can anyone relate?

To add one more out-of-the-box factoid to my situation. When I first started getting chronic urticaria from heat, sun and exercise, we tried to treat it with anti-histamines. I shared my reaction, but I quickly learned that alcohol (any drinking kind) would immediately resolve my hives within minutes... :o I wish this still worked, but it actually makes me feel worse now.

Title: Re: Polar opposite reactions to what's normally good for MCAS sufferers
Post by Bruce Hart on 04/19/14 at 22:26:52

Unfortunately with mast cell activation disorders (MCAD) it varies per person what is tolerated and effective, partly because of different mutations causing different mast cell mediator release. So some people's hypersensitive mast cells may release a lot of histamine and other people's may release a lot of prostaglandin or leukotrienes.

And many with (MCAD) do have trouble finding meds they can tolerate, but often it's the inactive ingredients, such as dyes and fillers, so people try a different brand or get it compounded at a compounding pharmacy to avoid the untolerated ingredients.

Zantac ironically gives me strong heartburn in seconds of taking it on an empty stomach but I tolerate Pepcid AC. But Zantac is tolerated fine for a lot of people with MCAD. It may be an inactive ingredient in Zantac I don't tolerate.

So yeah, antihistamines triggering your symptoms don't rule out MCAD. I'd like to hear more of your story about your symptoms and triggers. I'll try to remember to check back in a few days after you've written your story.