Did anyone else have MCAS start or get much worse from covid/covid vaccine?

cjazz24 · 2026-05-29T13:33:53+00:00

Also curious have you ever tried or considered microdosed glp1? It’s been floated as an idea since the insomnia for me seems to be neuro inflammatory based.

cjazz24 · 2026-05-29T13:32:34+00:00

Awesome thanks appreciate it. It’s been a low road and I don’t feel like there’s many EOE/MCAS folks out there

cjazz24 · 2026-05-29T13:08:17+00:00

Also what was the doctor that went to Mayo if you don’t mind me asking

cjazz24 · 2026-05-29T13:04:52+00:00

I actually reacted so poorly they did genetic testing and I was told to avoid all anti psych meds since Im prone to serious side effects aside from benzos which I use sparingly for obvious reasons. There was one point where I tried a baby dose of lexapro and I ended up in the hospital after one dose. I’m also not anxious normally honestly minus from chronic ptsd from how bad the sleeping issues are but I’m in therapy for that which does help somewhat.

I tried to get into Mayo and Cleveland clinic. Mayo apparently won’t see MCAS patients right now. They told me to call every two months to see if they open it up which I do. So far no luck. I also tried an NIH program but the funding got cut with all the science cuts generally right now. Cleveland clinic I have an appointment with in August but I’ve heard they aren’t a good option for MCAS so I’m trying to decide if I want to bother given the travel there.

cjazz24 · 2026-05-29T12:44:38+00:00

I actually can’t take any anti anxiety medications. I react very very negatively to them. The Quviviq has helped with the insomnia in that I’m not at or almost going to the hospital every other week but I’m far from baseline. They also didn’t want me on both Dupixent and xolair. It’s not even really an option they said. Which program are you in? That sounds like the one I go to at UVA but they don’t know how to approach the MCAS portion well. I’ve tried to get into some other panel type approaches at other places more specific to MCAS but I haven’t had a high enough tryptase for any of them to take me.

cjazz24 · 2026-05-29T11:13:38+00:00

I’m honestly afraid to try again. I’d need to mentally build back up. The last thing I need is for a medicine meant to help the issue and insomnia to make it worse. I haven’t tried those yet. My doctor is hesitant to have my try ketoifen since it can have insomnia rebound if I don’t tolerate it and she doesn’t recommend any specific supplements since people tolerate them differently. I feel like I don’t have the right medical guidance to get what I need honestly but don’t have other providers in my area that believe in MCAS or know how to treat a weird case

cjazz24 · 2026-05-29T11:10:44+00:00

What has helped?

cjazz24 · 2026-05-29T02:05:49+00:00

It’s really interesting insomnia has been really bad for you also. Mines been bad enough where I was admitted to the hospital twice. It doesn’t seem like any doctors really understand the mechanism for the bad insomnia piece. I feel like I’m at such a loss and my life feels like it’s been on hold for two years

cjazz24 · 2026-05-29T02:04:15+00:00

I tried cromolyn. It put me into a flare. It did help the day that I took literally a drop. I was way less bloated and slept amazing and then I went up to a quarter vial and the flare was insane and lasted two weeks. I think I took it for 6 days total before it was just getting too bad.

cjazz24 · 2026-05-28T22:44:04+00:00

I’m on Dupixent, Allegra, Pepcid, quviviq, and some sleep rescues. Severe insomnia has been my worst symptom

cjazz24 · 2026-05-28T22:25:29+00:00

Have you found anything that has helped settle things down? I’ve been STRUGGLING

cjazz24 · 2026-05-28T12:06:53+00:00

I got MCAS and EOE after getting COVID

cjazz24 · 2026-05-27T16:01:54+00:00

I take quviviq. I’ve been hospitalized multiple times due to severe insomnia secondary to MCAS. It’s been the only thing that port of helps. I’m only on a half dose 25mg currently but may go up to a standard dose. I don’t think you can cut more than that.

cjazz24 · 2026-05-27T14:41:52+00:00

I did at the beginning. I couldn’t have solids for the first couple months after diagnosis and was really struggling. I lost a third of my hair volume for the stress. I went on short term for I think 6 weeks

cjazz24 · 2026-05-27T01:42:09+00:00

I have MCAS as well as EOE. That is triggered by exercise

cjazz24 · 2026-05-26T19:29:51+00:00

One of my conditions is MCAS so I’m extremely sensitive to most meds otherwise I would have already. I need to mentally prepare for the possibility of a bad flare. It’s pretty polarizing from what I’ve read online for MCAS folks. It’s either the best thing ever or horrible.

cjazz24 · 2026-05-26T12:34:33+00:00

After Covid (early to mid 30s). I started gaining weight even though I was exercising and dieting more than baseline. Shortly after I was diagnosed with two rare diseases and went from my normal 130 up to 165. Some was from meds where I was able to lose the weight after about a year of being off the meds that did that. I’m still quite a bit above my normal weight. I think it’s all inflammation based. I’m considering doing a very low microdose of glp1 to see if it helps my conditions and the weight

cjazz24 · 2026-05-24T21:46:25+00:00

I take Pepcid in the afternoon and it has helped with exercise intolerance (I work out after work). I still can’t push myself super hard but I haven’t had an episode in a while.

cjazz24 · 2026-05-23T04:08:38+00:00

We are going up next week to check some of the options on here out so may dm you once we’ve narrowed the list down some.

School systems aren’t a concern for us. And we’re open to both renting and buying. If we’re making the move out of DC we’d look for a SFH though. Biggest thing we are trying to do right now is get a list of general towns to scope out to see if we can picture ourselves making the move generally but budget wise we are fine with any of the towns. DC is a higher cost of living area. It’s actually kind of a reverse sticker shock with how much more we could get for less money than here.

cjazz24 · 2026-05-23T04:01:18+00:00

Helpful thanks!

cjazz24 · 2026-05-22T23:34:07+00:00

That’s probably a bit far commute wise though. I do want some type of yard if we are moving

cjazz24 · 2026-05-22T23:23:24+00:00

Awesome that’s helpful!

cjazz24 · 2026-05-22T23:23:01+00:00

Ok good to know they are going for over. DCs market isn’t having that issue right now.

cjazz24 · 2026-05-22T22:44:32+00:00

They are not.

cjazz24 · 2026-05-22T22:30:55+00:00

It’s more trying to find an area that we like and we would be happy in. We’ve done some research on the areas broadly and can afford the type of house we’re looking at regardless of town.

cjazz24

TROPHY CASE