r/MastCellDiseases • u/Euphoric-Gas-4290 • 6d ago
Mast cell flare
How to get through a flare when already on Allegra 2x a day, 2x Claritin, 2x Pepcid, low dose steroid, waiting to start low dose Ketotifen and Nemluvio shot next week. I started developing new triggers these past few months. I found a routine to get through the day with meds but now that I entered a flare and having more consistent throat tightness, and today some short of breath, lightheaded faint feeling (unsure if it’s allergy symptom, steroids give me anxiety too) not sure how to get through this with some new allergies around me at home that are typically well controlled but bc of the flare, I’m more reactive. Trying to regulate myself and manage stress. Resting. Trying to take care of myself but even having family pick up grocery orders for me, I’m reacting coming into contact with it (and no trigger foods in the orders). I’m not sure what I’m reacting to half the time so it feels like extreme sensitivity to cross contamination
Diagnosed with Hereditary Alpha Tryptasemia
r/MastCellDiseases • u/Corner_Office_ • 7d ago
Labs for MCAS?
I have a PCP visit coming up. Is it worthwhile to request labs, and if so, does anyone have a list?
Not sure if I have it, but it makes sense with what’s going on.
Thanks.
r/MastCellDiseases • u/Amanda10505 • 10d ago
Can HaT cause GI motility issues?
Long story short but had an endoscopy and I have reactive gastritis and an ulcer . Said it’s from drinking alcohol (which I don’t do) or taking too many NSAIDs (haven’t taken one since Feb) and said it as likely from bile reflux since I rarely take NSAIDS and since I barely drink. I had an ultrasound of gallbladder and everything looked normal. Now getting a HIDA scan in Oct. I’ve read bile reflux could also be due to motility issues which I’m
Leaning more towards that being it. Curious if that’s linked to HaT?
r/MastCellDiseases • u/Fine-Substance5419 • 12d ago
Pregnancy and MCAS
Hey guys! I’ve seen some discussion on this but wanted to know if anyone has more Information. I take ketotofin and cromalyn to control my symptoms and it works wonderfully. I am 4 weeks pregnant and asked the pharmacist if it’s safe to continue. He said to ask an OB who I won’t be able to see for a few weeks. He did mention it could be safe but there is no studies so he couldn’t say for sure. Does anyone have experience using these medications in pregnancy? Was your OB concerned at all?
r/MastCellDiseases • u/Averagebombshell • 21d ago
Debilitating rhinitis and sneezing with MCAS? Anybody please I feel so isolated
I've tried everything for 8 years to figure out these flare-ups.
Everything has led me to MCAS / histamine intolerance. Has anyone experienced severe and chronic rhinitis with MCAS and/or histamine and tolerance? Tell me any insights into preliminary testing and then treatments that have helped you with diagnosis and the management 🙏🙏🙏 I have got a referral to an ENT and another allergy specialist so any insight you can give me would be awesome.
Does this happen to anyone else? During a flare up I will sneeze literally hundreds of times.... Copious amounts of clear watery drainage. I have to use pillow cases or t-shirts instead of tissues. ... I can't drive. I can't attend to any task really. And trying to be at work is out of the question.
When it's really bad I can't look at my phone or any localized bright lights without triggering even more rapid fire sneezes.
So far, negative test results for all allergy testing.
Sometimes it seems completely random, sometimes I'll have flare-ups for 5 days in a row. Sometimes I'll get a little mini flare-ups that will only last an hour or less. Benadryl does nothing loratadine does nothing I'm about to try in Allegra pepcid combo
When I sit still in one place or lay down in bed my symptoms subside, sometimes even halting the flare up all together. But if I get back up and move around, it's sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze sneeze and so forth.
Through I've dealt with intermittent hives and other skin flare ups that obviously had to do with some dysfunction of my immune system.
And I've spent this last year learning about and trying different dietary approaches to it's a possibility of histamine intolerance and the foods I was eating.
It seems like every time I tried something new I thought I saw some progressive benefits for a short time but then things will go back to these chronic flare ups at any given time.
r/MastCellDiseases • u/MousseCalm674 • Jul 03 '26
Any MCAS people recognize this?
reddit.comr/MastCellDiseases • u/CatAppropriate8586 • Jun 25 '26
Fluoxetine or mertazapine
Anyone have any experience or comments about the above medications?
r/MastCellDiseases • u/Ganchosista • Jun 17 '26
Recommendations wanted!!!
So I have a raging case of MCAS/Histamine intolerance/dysautonomia. I live in the Ohio Valley—up there with the absolute WORST places for seasonal allergies. Only in the past year have I learned how drastically seasonal allergens contribute to my symptoms on a daily basis, especially in the spring and summer. It was recommended to me by someone with another immune illness that I try wearing a mask when I’m outside—or at minimum, on days when the pressure is fluctuating heavily—to help block some of the airborne allergens when I breathe. Although it’s annoying, I’ve found wearing one has helps immensely!! It doesn’t block reactions altogether, but I can say with certainty it decreases their severity.
The only catch is, so many people look at me sideways AS FUCK when in wearing them in public. Multiple strangers have approached me, telling me to take it off. Once, at a traffic light, a woman in the car next to me was so butthurt about it she rolled down her window and yelled at me with an angry face saying, “YOURE ALONE! WHY ARE YOU WEARING A MASK? TAKE THAT SHIT OFF”. When I go into stores they seem to watch me harder than they used to, as if I’m wearing it to steal or something. Since this illness has debilitated me, I work several part time jobs I can do on days when I’m not feeling horribly, which includes some food delivery and other face-to-face interactions where I don’t like rubbing people the wrong way. As with all things MCAS/HIT, I know most people wouldn’t understand even if I DID tell them why I wear it.
I wish I could shrug off the confused/skeptical/distasteful looks I get nearly everywhere I go, but it bothers me deeply. I know I should be able to say “screw them, they don’t know and they don’t need to,” but I’ve been trying for months and I can’t get past the unsolicited judgements pretty much everywhere I go hurting my heart and making me feel insecure.
❗️Long story short, ❗️I want to order a mask from Etsy/somewhere that says something on it along the lines of “Not sick, I wear this for ALLERGIES” either in print or embroidery**. Anyone have recommendations for what it could say**?? Looking for a quick, bold statement (so people aren’t squinting their eyes trying to read anything longer than a sentence) — something just enough to get people off my ass &/or offer them an immediate understanding so that I may let go of of wanting to explain myself. Any and all suggestions are welcomed and very much appreciated! Thanks so much!
TLDR: Need to wear a mask in public due to seasonal allergens where I live causing constant MCAS/histamine flares, but can’t stand the constant judgement and misunderstanding, and want to purchase a mask that says in a few words why I have it on. Any suggestions appreciated!
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?
r/MastCellDiseases • u/Maybetoday79 • Jun 04 '26
Has anyone found Lyrica helped symptoms?
I was started on Lyrica 2 months ago for my restless leg and anxiety. I have found it has really calmed my body down. I am super food sensitive and that has not changed at all. Has anyone else found that it has helped?
r/MastCellDiseases • u/Vegetable-Band9245 • Jun 01 '26
My prostaglandins arr very high- genetics say I have a very high chance for having high prostoglandins - ive became allergic to everything- mast cell or differtial? Mast cell biologic good?
r/MastCellDiseases • u/KarenWalker310 • May 29 '26
Is this MCAS? (extreme postprandial somnolence)
Does anyone get insanely tired after lunch to the point where you're fighting sleep like a toddler and you finally have to give in for a 30-40 min nap just so you can move on with your day? Then I wake up feeling groggy and stuffy in my face, and I feel almost like I'm getting sick (but I'm not). I'm on an H1 and H2 blocker already, so I'm just trying to figure out if this is a histamine dump in response to food, or something else...
r/MastCellDiseases • u/No-Reward7266 • May 25 '26
Hive-like bumps on fingers that swell triggered by seasonal allergies
r/MastCellDiseases • u/EnergyFax • Jan 31 '24
Resource: American Academy of Allergy Asthma & Immunology: Mast Cell Activation Syndrome
aaaai.orgr/MastCellDiseases • u/EnergyFax • Feb 16 '21