My name is Jean-Francois Neron and i live in Quebec city, CANADA. I have received a diagnostic of Mast Cell Activation Syndrome/Urticaria last week. I am now looking to get in touch with other people suffering from this disease. I have so much to learn!

My problems started in 2008 after I returned from a 2-month stay in Afghanistan (I work as a photographer for the Canadian Armed Forces). Don't know if it was caused by the stress of being there or by all the vaccines that I had to get to deploy in that country, but I became very sick as soon as I came back home. I suffer from low back pain, diarrhea, inflammation, blisters in my mouth, burning mouth syndrom, arthritis, chest pain, sleep apnea, POTS...

JF

Welcome to the group!

I have heard of people using Xolair to treat chronic urticaria... ICUS is a good source of information about that (http://chronichives.com/).  A few people in this group have tried it too.  In the US it's very expensive and difficult to get your insurance to pay for unless you have asthma.

Have you tried any H2 antihistamines like Zantac, Pepcid, etc...?  Another common treatment for MCAS is a mast cell stabilizer, either cromolyn sodium or ketotifen (which should be pretty easy to get in Canada).  It takes a few weeks to reach full effect, but oral cromolyn helped a lot with my GI symptoms and joint pain.

Heather

I have a prescription for Zantac but have tried to take it many times and it gives me severe low back pain when I wake up in the morning... when I stop Zantac back pain is gone, if I start Zantac again back pain is back!! The immunologist told me to stop it.

Zyrtec and Singulair are helping me a little bit withour side effects, fortunately. But I am still far from being OK, that's why the immunologist want to start me on Xolair. My employer the Canadian Armed Forces is not paying for it for now but the doctor will send them a letter supported with scientific results to support our request to have this medication refunded. I just hope it will work...

JF