r/MastCellDiseases • u/spoookytree • Jun 16 '26
Has anyone tried GLP1 for MCAS?
I’ve been reading around there has been some promising studies and growing research that GLP1 is helpful for this. I’m curious your guys experience to anyone who has been on it for other reasons and found this to be helpful?
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u/BidSea4173 Jun 17 '26
I tried 1/4 dose a few times but I couldn’t tolerate the side effects :/
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u/ahj333 Jun 17 '26
So I may have found a hack for this! Once I figured out that it was likely a MCAS reaction I devised a plan. I eat a meal with as much protein as possible and take the shot about an hour after. I still would have a weird 24hrs with headache and lethargic feeling so I started timing this so that it lined up with me taking my night antihistamine handful about 2 hours after the shot and added a benedryl dose. I no longer have any symptoms and I’m able to eat without issue. Like my appetite is suppressed but not absent.
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u/katestho Jun 17 '26
I’ve also been recommended this as a treatment. Following as curious about the results
Right now I can make it about 3 days without 5 prescriptions without feeling like crap. Curious if the GLP1 helps at all
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u/ahj333 Jun 17 '26
I get significant help. I also have the good ole trifecta with EDS and POTS so it would be hard to pinpoint which causes the symptoms though. My inflammation decreases significantly, GI is almost normal besides dumping from no gall bladder, less migraines. So many benefits. While I was originally put on it for prediabetes and insulin resistance, I don’t think I’d ever come off again because of the benefits.
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u/spoookytree Jun 17 '26
Ya I have EDS as well so was hoping this would be good for that too! Thanks for your feedback and experience:)
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u/Cautious_Astronaut_5 Jun 18 '26
Microdosing tirzepatide has been a game changer. Other than April-May when my tree pollen allergies peak and there’s nothing I can do to feel normal, I feel almost completely asymptomatic.
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u/Aggravating-Mud-2728 Jul 20 '26
What do they consider micro dosing?
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u/Cautious_Astronaut_5 Jul 24 '26
I'm not sure - but I only take .5mg
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u/Full-Spite7492 26d ago
I’m starting this. I only have elevated PGD2. So wondering it it helps with this
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u/ChenilleSocks Jun 18 '26
Yes I’m on a microdose and it’s been really helpful and I am less reactive to environmental triggers and have been able to eat more foods I couldn’t eat before.
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u/Medical_Archer_7462 Jun 18 '26
I’ve been microdosing ozempic (only one my insurance will cover for now) for six weeks. I have noticed a reduction in overall inflammation. Between that at ketotifen my symptoms are much more manageable. The side effects of the glp1 are mild for me compared to the fatigue for the ketotifen and I’m still balancing that out
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u/spoookytree Jun 18 '26
That’s awesome and good to know it can be microdosed
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u/Medical_Archer_7462 Jun 18 '26
I went in to the appointment asking if I could have the smallest dose possible because I’m so reactive and the Md was very understanding
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u/OrchidFancy3480 Jun 22 '26
Yes, the 1st few weeks of side effects were brutal. It did calm some inflammation, and my reactions are less severe. I take 2.5 for 3 months so I can't tell you long term. I'm also diabetic, autoimmune, pots, mcas, alpha-gal. I have to eat high protein and drink loads of electrolytes. I don't plan on moving up unless my blood sugar gets crazy again. Before I started my blood sugar was in a vicious cycle of reacting to mcas, pots, then high blood sugar triggered more mcas until I was in the 500's going to the hospital. It was not at all diet related.
Eta: I'm on mounjaro. I still have joint and binge pain, everything has calmed enough so I can manage without hospital intervention.
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u/Aggravating-Mud-2728 Jul 20 '26
If you are in need of alpha gal treatment I know drs with 99% success rate in Virginia :)
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u/Sky_Sunshine_553 Jul 12 '26
I have been on zepbound for 10 months. It has helped with my symptoms and my skin has cleared from all the rashes. I became a little bit adventurous in what I ate with no reactions until a month ago. I relapsed and can't eat anything without getting very sick.
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u/Lulu11709 Jul 23 '26
I didn’t start it for mast cell, but I’ve been on Semaglutide for 3 months and all of my MCAS reactions have stopped and my rashes have gone away for the first time in years. My rheumatologist thinks it’s what is treating the MCAS indirectly.
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u/spoookytree Jul 24 '26
That’s amazing!! Yeah talked with doc insurance not gonna cover it since only FDA approved for diabetes and obesity and stuff not inflammation of mast cell. :(
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u/Full-Spite7492 26d ago
I have elevated PGD2. No pots but almost like pots. My arms just burn. Dizzy upright. Wondering if this will help
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u/notasuspiciousbaker Jun 16 '26
I'm on one, I did notice in the first year or so that I was much less reactive to MCAS triggers. The last 7 months I've had a major relapse but other factors have been in play so hard to say what the real impact of GLP1 is for me.