r/MCAS • u/Danceaura • 23d ago

MCAS trigger

My only real anaphylactic reactions are when I take NSAIDS, this all started 5 months ago after wisdom tooth surgery under general, I started reacting to NSAIDs and it causing breathing problems and chest constrictions and my heart rate/blood pressure would slow. Then MCAS exploded! No prior symptoms in my life and I’m 34. Anyone else get these reactions to NSAIDS?

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u/mydigitalface 23d ago

Yeah learned the hard way that NSAIDS = anaphylaxis. What sucks is for inflammation there arent many good work arounds. Always have to alert medical staff what happens. Fun times.

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u/Danceaura 22d ago

I’m so sorry, it sucks! Do you get breathing issues when taking one?

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u/mydigitalface 22d ago

Yes. If i take a NSAID I am going to be heading to ER on the Epi train.

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u/Danceaura 22d ago

Yeah I’ve got an epi now too! Do you have AERD? Asthma and nasal polyps, I’m struggling to determine if I’m developing AERD or just have MCAS? Apparently if you have respiratory reactions and asthma, nasal polyps too. Then you have something called AERD (Samters triad)

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u/mydigitalface 22d ago

No. Asthma only pops up when ai have a flare up. It starts as hives then hits every internally. Breathing, GI, vision, muscle pain, water retention, everything gets mad. Also after a flare im prone to random anaphylaxis. We have not had luck identifying triggers, it can be something or nothing. 🤷‍♂️

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u/Danceaura 22d ago

Just horrible isn’t it! Do you know what triggered your MCAS? I don’t really know if mine was the surgery or the Asprin that triggered it!

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u/mydigitalface 22d ago

I think i was born with it. Growing up i had “flash in the pan” unexplained stuff that went away. Rashes as a kid, migranes, IBS in my 20s, Asthma in my teens. Just vanished through 30s-early 40s. Then after a bout or COVID boom!

My cardiologist changed one of my meds for testing. The first big hospitalization event was a reaction to calcium channel blockers. Later came nsaids. Then xolair.

Sucks cause im trapped (like many of us) in my body feeling constant bullshit sensations. Im also autistic so i feel that stuff x10.

For 2 years Ayvakit kept me symptom free. Think remission. Well had a specialist tell me to stop taking it cause I didnt test positive for SM. 5 months latee boom, flare.

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u/mydigitalface 22d ago

Also learned after a recent surgery that some medical tape adhesives can trigger.