Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> New to site: diagnosed MCAS http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1392603241 Message started by Angela on 02/16/14 at 14:14:01

Title: New to site: diagnosed MCAS
Post by Angela on 02/16/14 at 14:14:01

This past week I was diagnosed with MCAS by Dr. Castells after 1 1/2 years of symptoms and 16 anaphylactic reactions. I've had symptom improvement on high doses of antihistamines (6 Zyrtec, 2 Allegra daily) but nothing stops the anaphylactic reactions. Dr. Castells lowered Zyrtec to 2 daily and added aspirin and Ketotifen. Turns out I'm reacting to Ketotifen and needed Epi. Was very hopeful after appointment with Castells and now very discouraged because I can't take the new meds. I see her in a month to go over test results and see if I need bone marrow biopsy. This disease has been life changing and I do everything I can to avoid triggers but continue to struggle daily.
I have read a lot of posts here to prepare for doctor appointments and am grateful it is here to use.
AJ

Title: Re: New to site: diagnosed MCAS
Post by Joan on 02/16/14 at 16:52:58

You are in good hands with Dr. Castells. Don't get discouraged. There are a number of meds to try, and it's really trial and error to find the right combination that works for you.

Has she suggested an H2 antihistamine, such as Pepcid or Zantac? Those are sometimes easier to tolerate than ketotifen. Some people do well on Gastrocrom. It can be tricky to start, though. I had to begin with a small part of a vial mixed in a pint of water and then work my way up.

Hang in there, and don't be shy about calling Dr. Castells in between appointments if you're continuing to have problems. No need to wait for an appointment.

Let us know how you're doing and feel free to post any questions you have.

Title: Re: New to site: diagnosed MCAS
Post by mikev on 02/17/14 at 09:28:37

angela:
first i'm sm not mcas, so a leaker not a shocker & each one of us even if diagnosis is the same are so different. my first efforts with ketotifen didn't go well. i was getting it on a script from canada for zaditan-which i name brand for ketotifen & it didn't go well, so went then tried the liquid version, again not a good result as found out the liquid version had alcohol ibn it. so went back to gastrocrom that i was on but from everything i read ketotifen was a better drug, used world wide but not in usa as not approved by the fda. i tried again 2 years ago getting it from a pharmacist in washington state who componds without all the additives that where present in the zaditan. as i stated now on 2 years & it's ended up being only drug that helped me. i had to change my zrytec to allegra as i was experience a good amount of fatigue. so i guess what i'm saying is because a drug fails one time don't rule it out forever as we are so complicated another set of circumstnaces could have cause the bad result. it's a shame but trial & error is our only method to find what works best for each of us. the advantage you have is you working with a true masto specialist, i sorry to say was not.
mikev