Mastocytosis & Mast Cell Disorders

What do you all do for your angioedema/swelling? I react too much to attempt Xolair.

22 Answers

Answered Dec 25, 2017    reply

Cold, ice packs(or if you live in the north go outside) hydroxyzine. I’m also on nifedipine and that seems to help a bit.

Answered Dec 25, 2017    reply

Thank you! I do try to go out as often as I can.

Answered Dec 25, 2017    reply

min-I know that cold is a trigger for some people, but it always helps me when I get angioedema.

Answered Dec 25, 2017    reply

Same for me! My body loves cold. Doesn't mind heat so much either though.

Answered Dec 25, 2017    reply

min-lucky! Heat is a baaaad trigger for me. So I prefer the winter over summer. I can’t imagine reacting to both


Answered Dec 25, 2017    reply

Benadryl and time

Answered Dec 25, 2017    reply

I have swelling 24/7. I'm in a constant flare. It's never 'gone.'

Answered Dec 25, 2017    reply

Ugh! Sorry to hear that


Answered Dec 25, 2017    reply

I started to wear maternity clothing (that don't scream maternity) most of my angioedema is in my abdomen. I refuse to not be comfortable anymore, it's been 5 years of caving into maternity clothing.

Answered Dec 25, 2017    reply

That is most-likely SIBO. I don't believe that stomachs swell enough to really look like balloons or you have to wear maternity clothing unless you have SIBO/overgrowths/dysbiosis. Maybe you can see improvements by healing your gut? Berberine/biocidin/Allimax is a beautiful thing, if you can tolerate those.


Answered Dec 25, 2017    reply

I was In Your place too...in and out of ER every week until I tried Xolair. hoping you feel better soon.

Answered Dec 25, 2017    reply

So glad to hear.

Answered Dec 25, 2017    reply

min exactly how I started! I wasn’t in ER for Ana initially but for dizziness so bad I walked into walls and fell over, temporary blindness, brain fog so fuzzy I just had to lay around. I also progressed to gut problems, ana, etc. My heart is with you. You are me two years ago. I will think of you, and if you don’t mind, pray for you too.

Answered Dec 25, 2017    reply

min you are what my doctors call a “textbook case” of MCAS.

Answered Dec 25, 2017    reply

Imelda Ugh yes, that sounds about right. How long have you been on Xolair if you don't mind my asking? I also have SEVERE MCS, can't be around fabrics and all chemicals swell me. Sleeping on fabrics is actually what keeps me in a constant 'attack.' If I slept on plank boards, things would be different.

Answered Dec 25, 2017    reply

I so appreciate your sweet words and prayers.

Answered Dec 25, 2017    reply

min I had to stop working in my own retail store because fabric dyes on synthetic fabrics caused me to hive and swell. One of my first reactions. I’ve been on Xolair 18 months. I wear a mask for chemicals so I don’t have seizures and got a handicapped parking permit so I don’t have to walk through parking lots (exhaust). My home is chemical free and plastic free now as much is possible

Answered Dec 25, 2017

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Answered Dec 25, 2017    reply

Imelda I sure will! Amazing to hear how similar we are!


Answered Dec 25, 2017    reply

rehydration salts, like TriOral, are a must when you’re suffering like that, so you don’t get dehydrated...

Answered Dec 25, 2017    reply

I didn't realize that it could make you dehydrated! I will have to get those. Coconut water helps me so so much but I can't tolerate the sugar.

Answered Dec 25, 2017    reply

min fluid can leave your cells when reacting and go into your body cavity...salts replace the fluid In Your cells. Also switch to pink Himalayan sea salt for food..it’s higher in minerals.


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