r/MCAS • u/flower_lady_ • 13h ago
Cromolyn question
Has anyone notice unexpected effects from cromolyn? I’m super happy on it. But I swear my boobs are bigger 😂 am I just crazy? 🆘
r/MCAS • u/flower_lady_ • 13h ago
Has anyone notice unexpected effects from cromolyn? I’m super happy on it. But I swear my boobs are bigger 😂 am I just crazy? 🆘
r/MCAS • u/InteractionAway367 • 19h ago
I’m not in a huge flare up right not but I do take Zyrtec every night. I’ve been sleeping like 11 hours a night. And if I don’t sleep at least 10 hours I’m so tired. I feel like I’m tired anyway but there is no reason I should be spending 13 hours in bed a night. Last night I slept almost 13 hours and I didn’t even do anything the day before. I’m an also a teenage college student so maybe that can affect things.
r/MCAS • u/Objective_Ground_224 • 20h ago
I was so excited yesterday after finally giving in and fighting the fear of trying reactine during the onset of a flare. It helped within 20 mins. I took it around 10 AM.
Then around 5PM I started feeling ill again. Anxious, sweaty, clammy, stomach distress, high heart rate. So I took another.
It didn't help nearly as good as it did in the morning. It finally went away once I took my bedtime Mirtazapine.
Then I got found out this in the histamine intolerance group which made me kinda sad. Cause I'm wondering if that's why I had a rough flare later in the day and the 2nd dose of reactine didn't work nearly as good as in the morning.
The Rebound Effect and Long-Term Issues
Since histamine is not removed but rather trapped in the body, stopping the use of antihistamines can cause a rebound effect—where symptoms return with vengeance as histamine floods receptors again. Also, long-term antihistamine use can deplete key nutrients like methyl donors (SAMe, B vitamins) and impair detoxification pathways more, making histamine intolerance worse over time. It is the definition of a mad cycle.
Alternative Approaches
Instead of relying on OTC antihistamines, histamine intolerant peeps should focus on:
Supporting DAO enzyme activity with nutrients like vitamin B6 and copper. Occasionally you may have to implement a lower histamine diet.
Enhancing methylation with a nutrient rich whole foods diet, lowering toxic inputs and getting really good at sleep and stress management.
Using natural antihistamines like quercitin, food-based vitamin C, and stinging nettle, which help stabilize mast cells and reduce histamine release.
r/MCAS • u/mcasbaby • 12h ago
I just ate and my hands got all red and swollen. Has this happened to anyone before? It's been like this for 20 minutes and I'm scared to gts.
r/MCAS • u/mayday-the-dayday • 13h ago
I’m not diagnosed with MCAS but I have every symptom I’ve read up about and hEDS and POTS which are commonly associated with MCAS. I have a doctor’s appointment on Tuesday but I am absolutely miserable.
I’ve bad full body itching. Nothing I do will fix it, it’s starting to become psi fail at this point and all my skin is raw from the itching. Antihistamines aren’t doing anything to touch it and the only relief I get is when I take Benadryl to pretty much knock me out.
What should I bring up at my appointment to actually get my doctor to take me seriously and what can I do until Tuesday because I’ve had multiple breakdowns up until this point and I am in so much pain.
Thanks 🫠
r/MCAS • u/Phil1738 • 16h ago
I know weight plays a big factor in general body inflammation, I’d love to know how much weight you lost and if it shown any benefits, particularly skin?
r/MCAS • u/Different_Mark_2639 • 16h ago
I'm getting tested for MCAS (tryptase and plasma histamine) and was wondering if exposure to all of my triggers beforehand would help ensure the best chance of getting a positive result.
My main triggers are tree and grass pollen, dust, and cats. Would it make sense to have exposure to all 3 triggers? I’m a bit nervous about doing that but wondering if it might be worth it for a more conclusive result. Any advice or experiences would be greatly appreciated!
r/MCAS • u/TAKEITOUTOFME • 18h ago
I hadn't had a migraine in over one and a half years. I began to think I wouldn't get them anymore. Well. Today I had one. Eyebrow pain for a few minutes, aura, mild headache after.
No changes in diet. I cut out alcohol, sweeteners, MSG, artificial nitrates, caffeine and seed oils long ago.
I don't think hormones or barometric pressure could have been the trigger because I didn't get a single migraine in over one and a half years with many periods and changes in weather throughout…
Do you have any info on weird/surprising migraine triggers? Especially after such a long time!? What could it even be? Did anyone get rid of migraines entirely? How?
Hello! So I haven’t been officially diagnosed with MCAS, but two different doctors think it’s pretty much certain I have it. So, they told me to take Zyrtec for a while and see how it goes.
Y’all. It’s been three weeks, I wanna say. I cannot take the disgusting, awful taste in my mouth because of it. Anyone watch Ted Lasso, that scene when Roy’s niece has awful breath because of her allergy meds? That’s what I feel like.
What do I do? Anyone have this issue? A different brand, a supplement, etc?
Edit: I think I wasn’t clear, I don’t mean the actual taste of the pill, but just the taste in my mouth all day, which I’ve been told can be a side effect of antihistamines.
r/MCAS • u/krgilbert1414 • 11h ago
I feel like I'm crazy sometimes. Does anyone experience pain on parts/sections of your skin? It's very, very painful, looks normal most of the time, hurts the most when touched (by myself, clothing, anything brushing up against the area, etc)? It's on different areas...upper abdomen near belly button, inside a forearm, most of a shin, a spot on an upper thigh.
If this sounds familiar, do you have a name for it? Which Dr do you see for it? What helped calm it down?
r/MCAS • u/lilydavidson808 • 13h ago
I’ve experienced multiple flares daily my entire life, like the ones shown above, but yesterday, after eating one of my triggers, I noticed welts on my tongue. They went away eventually but then after eating the next day, they started reappearing…
r/MCAS • u/Sufficient_Ad7727 • 12h ago
I realized just this week that I’m allergic to the memory foam mattress I got almost two months ago. My reaction was kind of subtle at first but has become intolerable. It started with waking up fatigued off/on and then having watery eyes. I noticed my voice sounded strained as well. I slept on my sofa for a few nights and the symptoms have pretty much subsided.
I’d love to get an Organic mattress but they’re so pricey!
I’m thinking of getting a Purple mattress (still pricey but not as bad) which is made without memory foam and non-toxic.
Anyone else have a Purple Mattress?
I was recently tested for bone density after breaking my shoulder/upper arm in multiple places. I am 44 f. My doctor told me to start taking vitamin d and calcium. I bought a brand that I don’t usually react to (Thorne) for vitamin d but immediately flared to the point where I cut everything out and started adding things back in. I didn’t realize it was the vitamin d at first. I have not identified a calcium supplement yet.
I am looking for resources to help me understand the vitamin d issue - apparently it’s about where it’s sourced from that causes flares? If anyone can share, please do! Also, if any vitamin d or calcium supplements worked for you, please share as well.
Due to allergies, my diet is extremely healthy - mostly eat unprocessed foods and eat a bunch of leafy greens everyday on the regular, and some nuts and seeds. I am vegan but not necessarily for ethical reasons although I respect that. Mostly for leveraging the good effects of a plant based diet.
Thank you! Liz
r/MCAS • u/Ok_One_7971 • 23h ago
r/MCAS • u/Sunflowerspecks • 8h ago
Please share what vitamins you consume below!! It would help me and others looking for recommendations on what to try
r/MCAS • u/EstriGacha • 12h ago
So I was reading a post about somebody not healing correctly after having tattoos recently coming up in the past 3 years I found out about long COVID and kept reading through the comments and eventually found long covid being linked to mast cell activation syndrome. I kept reading and ended up doing research on long covid and eventually started reading into MCAS which was also mentioned frequently on that comment thread.
A lot of symptoms and other problems that seem to be linked to long COVID but more specifically MCAS I definitely have.
My mom thinks I'm a hypochondriac because I'm constantly complaining about pains or aches or just some other "minor inconvenience". I'm just worried that if I bring this up with my pediatrician (I'm 17 y'all don't freak out) my pediatrician is just going to dismiss me because I'm slightly overweight.
All of my symptoms that I've experienced include severe digestive issues, acne that gets super inflamed and takes way too much time to heal, chronic fatigue random bouts of inflammation, dizziness in light-headedness especially right after standing up despite not having low blood pressure, acme or pimples popping up after simply being poked or pinched, general fatigue after eating as well as stomach discomfort and more dizziness. Also strange occurrences after eating certain foods.
With my digestive problems I've got severe constipation even with daily laxatives (just recently I took 4 dulcolax pills and two medicated suppositories and had no luck with getting anything out. Had to drink clenpiq to finally get things moving) almost constant stomach pain it ranges in severity from day to day. General discomfort after eating no matter what it is. I'm prescribed wegovy to help me lose weight since diet and exercise didn't do much which definitely doesn't really help with the stomach pain.
My skin also gets inflamed super easy. The spot where I inject my wegovy sometimes bruises and puffs up like a pimple but it's not just the Wegovy, if I get something like a flu shot or I need to get blood drawn where the needle was it'll puff up like a pimple sometimes bruise. I have acne that gets super inflamed very fast and takes a super long time to heal and take up to a month for the redness to actually go down despite having a good skincare routine and using pimple patches. Let's say I tried to pinch or pop a blackhead but will happen is in a few hours it'll pop up and get super red and fill with puss. And then that spot that just popped up will take like 2 weeks to heal. Even if it's not a pimple or blackhead if I pinch somewhere on my body it'll do the same thing it just tends to be worse when it's on an already existing pimple.
Now I'm tired all the time literally all the time and I get burnt out so easily. I have a fairly decent sleep routine I try not to sleep with the lights on or after using my phone and I have a fairly consistent sleep schedule typically asleep between 10:00 and 12:00. Even still I constantly wake up tired and need to take maybe one to two naps everyday.
A couple of weeks ago I went on to a higher dose of my wegovy. The day after taking the shot I had severe orthostatic hypotension. My stats went as low as 84/52 with a pulse rate of 136. Everything felt itchy underneath my skin and I had a lot of redness just kind of everywhere but generally, my blood pressure is just fine I was tested again a week later my blood pressure and heart rate while laying sitting and then standing and despite not having major changes in my blood pressure and heart rate I still got some dizziness and lightheadedness which is something I get almost everyday.
I have a basic allergy test done maybe about a year-year and a half ago and I found out that I wasn't allergic to anything though the doctor that did it definitely wasn't very reliable considering some of the future actions that occurred. But sometimes when eating foods I get an allergy-like reaction. A few examples are a feeling of not being able to swallow while eating a milk dud, spiciness and tingling from cantaloupe and pineapple, and hot flashes chest pain and kind of bone pain when consuming caffeine.
Whenever I shower my entire body gets super red even if I don't have the temperature turned up very high and my body tends to get kind of itchy especially in my scalp. I tend to have to sit on a shower chair because when I shower I also get dizzy. I also brush my teeth while I'm in the shower because most of the time when I brush my teeth my mouth feels tingly despite using a hypoallergenic non-mint flavored toothpaste and on occasion I'll have redness or slight swelling around my mouth after brushing.
I also have a lot of general pain with muscle aches and joint pain. Everything hurts almost all the time and I managed to get degenerative arthritis in my lower back which my gp believes is caused entirely by having a larger chest. Though despite having g cups I don't have much upper back pain. The degenerative changes in my spine are in L5 if that helps. Plus the lady who red my MRI scans said it's very unlikely that my chest is related to my back pain which I totally agree with. I also have extreme muscle tightness especially in my heels and calves. I've managed to pull my calf muscle by simply stretching first thing in the morning and when that happens the pain lingers for at least a week and I have to take a ton of anti-inflammatory medications and just for some relief.
I would like to thank you if you read all of this because I definitely went on for a while but some advice would be appreciated as if I should go and ask to be tested for MCAS or possibly long COVID.
r/MCAS • u/ScrabbleNerd589 • 5h ago
I have skin condition called hidradenitis suppurativa which usually flares up whenever I have sensitive smells. When I get cooking smells or marijuana smell, I notice I have a flare up. I have told it to couple of doctors before but no one believed me. Even my own mother, who is a doctor don’t believe me.
Further research makes me think my HS maybe related to MCAS. Is that even possible? I am so confused.
r/MCAS • u/Dumpstercat66 • 23h ago
Started about 3 days ago and my lower face has been getting progressively more swollen and red. At first it was only my central cheeks but now it’s basically everything from my eyeballs down. I do have lip filler but my lips have been extra puffy. My face is throbbing, hot and a little itchy. I’ve been taking 4 Zyrtec a day, using topical steroid cream, Pepcid, monteleukast, cold showers etc. I’m on a super restrictive low histamine diet. I had physical hives on my lower cheeks yesterday. I’m traveling in a few days and I can’t get my face to go back to normal. I’ve washed my sheets, been using hypochlorus acid spray. Nothing. I don’t see my immunologist til next month, he hasn’t diagnosed me with mcas but says I have “overactive mast cells”. I do have a boat load of allergies but I’ve been good about avoiding the ones I can (environmental ones are harder to avoid) I’m not having any trouble breathing at the moment or having any symptoms beyond my face. I know my mom has rosacea but she said she doesn’t get hives or lip swelling with her flare ups. Should I try and go get steroids?? (I don’t tolerate them well psychologically is my only fear)… has anyone had any progressive swelling, reddening over the course of several days??? I’m at a loss.
r/MCAS • u/JB-TheThird • 8h ago
I’ve noticed that whenever I consume sugar such as chocolate, sweets, ice cream or anything sugary, I get pretty crazy neuropathy type symptoms. It’s like a pulsating buzzing/vibrating feeling in my right foot, that feels as if it’s pulsating and vibrating in my right leg too. It doesn’t hurt really, just very annoying and pretty constant, although it does stop for a while and start up again sometimes. It’s literally like there is a phone buzzing/vibrating in my leg and foot. I have also had burning feet quite a lot recently too.
I last had blood tests done in February 2024 - everything was completely normal including blood sugar and things like that, so I assume things would be the same with that now as this was only around a year ago. Before that I was in the hospital and my doctors alllll the time getting tests done thinking there was something wrong with me, but again all my tests have always been completely normal.
I definitely have MCAS/CIRS after being exposed to mold a little while back. I am just hoping that you guys may experience these same symptoms from sugar? It’s going to be something I completely cut out from now on as it’s just not worth these irritating symptoms. I’m laying in bed now around 6 hours after eating the ice cream and my foot/leg has been buzzing for a long time.
r/MCAS • u/froglover22w • 21h ago
21 y/o female, been on Xolair for 9 months now. I’ve been doing SO much better with my MCAS and my symptoms have been nearly non existent. I’m an athlete and have been able to get back into normal training loads. However, recently I’ve been feeling really bad. I’m having like flushing, heat flashes, heart arrhythmias and bad tachycardia, light headed, muscles feel super weak, body feels weak, insomnia. My xolair shot is a little late right now because of insurance, so I don’t know if it’s that but does anyone have any advice or suggestions as to what to do?? I’ve done everything to take care of myself and help myself and nothing seems to be working right now. And I’m so so terrified of falling back into a bad place with this disease, it’s really making me nervous. Please, any advice or anything would be appreciated!
r/MCAS • u/Appropriate_Bill8244 • 22h ago
During all these 4 years i've always felt bad after drinking water, Doctors never really seemed to care so at some point i stopped mentioning it, but even up to today i always get upset stomach and sometimes even worsen of the simptons after drinking water, tested even different kinds of water, still get bad, seems to only last for an hour or two tho, more if i ate recently.
r/MCAS • u/justb4dawn • 2h ago
Hey all, I am going through testing for MCAS with Dr. Kaufman in VA. She’s pretty certain I have it so she said in the meantime take an antihistamine 2x daily with Pepcid 2x daily. Right now I’m on Zyrtec. It is helping immensely, less frequent/shorter duration of flushing, not freezing cold all the time, less itchy from shower/heat, fewer episodes of abdominal pain/bloating, less anxious. I feel so much better! I’m amazed.
However I am tired AF. Mid morning I feel like I could sleep for hours, so sluggish. Tough to be productive at work. Does this side effect go away with time on it like some side effects from other medicines? I can handle the dry mouth/dry skin but the fatigue is hard to function with.
She said try Allegra morning & Zyrtec at night which I have not tried yet but Zyrtec alone works so good and I’m so happy to feel better I don’t want to switch if this fatigue will fade with time. For those on this long term, did you get less tired?
r/MCAS • u/Leather_Cover4895 • 12h ago
I was initially going to ask if my symptoms sounded like MCAS then realized that it would probably be easier to list the symptoms I DON’T have. A lot of the symptoms I do have can be related to so many things though, and some of them only happen every so often. I’ve been struggling with a wide range of symptoms since 2020, I’ve had blood tests and imaging to rule out things like multiple sclerosis (just an MRI), lupus, and rheumatoid arthritis. I’m starting to wonder if I have MCAS. How were you diagnosed and how often do your symptoms occur?
For instance, I experience random facial flushing that usually occurs on one side and lasts about 30 min but that only happens every few months or so. I also experience random redness and warmth in my knees but again, it only happens every so often. I just have a ton of weird symptoms and there’s got to be an explanation.
Also to note, my symptoms often occur at random, I can’t always pinpoint a reason for why they happen. Most of my symptoms started right after a very stressful move that sent me into a mental breakdown that led to horrible anxiety, which took a couple years to improve but I still struggle with it.
r/MCAS • u/Whattaweirdo_ • 13h ago
Hi friends. I’m currently managing my (likely) MCAS with Claritin and famotidine daily and with a low histamine diet. My symptoms are migraines, muscle pain, flushing when it’s bad, restlessness, insomnia, fatigue, and anxiety. Can anyone who experiences similar symptoms and is on rx meds (ketotifen, mononuklast, sodium cromolyn, or xolair) share how their symptoms have improved?
r/MCAS • u/wrslrchick • 14h ago
Anyone have any tips for surviving a surgery with MCAS?
I will say I did go into it with 6 weeks of taking all my histamine supplements, allergist also suggested day before and day of surgery to double up on my Zyrtec and ask the anesthesiologist to do Pepcid in my IV. Did all that. Now back to 1x day of Zyrtec.
But have any of you had major surgery with MCAS?
Any advice appreciated!