Hi all! I 21F been diagnosed with pots for about 3.5years now. I have history of idiopathic hives and sometimes anaphylaxis which my allergist previously thought was a horomone allergy?Recently I’ve learned about mcas and I was wondering if my legs and arms looking like this post shower was a more pots issue or mcas issue? This is also about 20-30minutes post shower it still looks like this as well as some facial swelling. I am worried if I go in and show my doctor they are not going to take me seriously due to how they first reacted when I was said I was having symptoms of pots and try to pull the anxiety card.

So once a month for the past 3 months. Starts with extreme cramps diarrhea vomiting (sometimes) and wheezing. The first two were not as bad but tonight my fave hands and feet blew up! I had to call 911. I itched alot this time too.

So long story short I have been “sick” for 5 years had tons of tests everything that’s the Dr. could think of, everything normal nothing that points to anything being wrong with me, I went to an allergist 2 years ago they suspected EoE or MCAS my allergist recommended getting another endoscopy to test for the EoE, I had that done and again nothing everything normal except my lower spinster isn’t opening and closing like it should, at this point my GI Dr recommended a motility study, wich was horrible by the way I am awaiting the results of that test I had it Thursday last week, so I went back to my allergist after the scope showed no EoE on how to proceed and we are continuing to treat the suspected MCAS with 2x famotidine 10 mg 4x 10 mg ceterizine 2x azalastine nasal spray and 2x Flonase I just added cromolyn sodium with meals and large snacks and montelukast and it’s only been a few days but I really don’t notice any improvement. Now I find myself just spinning, how do I know I’m even treating the right thing with no official diagnosis, I am so frustrated and just at my whits end all my symptoms come from eating, am I on the right track. Any advice is appreciated thanks in advance. My symptoms are Problems swallowing Short of breath Throat tightness mins to hours from eating Chest pressure Nasal congestion Extreme tiredness after eating Choking and hacking food and pills water back up Shooting pain in throat Hiccups

Anybody with MCAS has experience with Ivabradine?

Does it help you without making your mast cells degranulate?

If you have ME/CFS too and if you have some level of chronotropic intolerance (your HR doesn't go as high as expected during an effort)?

Thanks

What symptoms do you get from eating eggs?! And is it possible to only react to them when eaten as fried or soft-boiled egg, but not to react to them when eaten as an ingredient in foods like meatballs or desserts?

Every time I have a good laugh I get rashy and itchy. My rash is always a burny itch. Like it's itchy with a mild burn and when I touch/itch it feels like it's on fire.

Is laughing a trigger for you and what do your MCAS rashes feel like?

Hi! I’ve been on an NG tube for 5 weeks and I believe my mcas is causing an intolerance.

Background: I have diagnosed Ehlers Danlos which led to the mcas diagnosis. I have severe IBS, lost over 20% body weight in 6 months and was hospitalized with failure to thrive twice, mainly due to visceral hypersensitivity. I got the tube the second time and was doing great, everyone’s goal is to get me off the tube but me personally I’ve always hated food, that’s a story for another time though.

After about a month, my stomach revolted. I’m writing this at 2 am on the toilet at Disney because it’s been like I’ve had a perpetual stomach bug. Stomach is so loud all the time, cramping and sharp pains, throwing up, and severeeee diarrhea. Like colonoscopy prep severe. I am on the toilet at least 10 times a day pleading for mercy and for someone to either fix this or put me out of my misery. My GI was so happy I gained 15 pounds that they aren’t addressing how this shits trying to take me out, literally and figuratively.

Does this sound…mcas like to yall? Every time I start something I last a month before my stomach just loses its mind. I’m in health therapy to deal with my gut nerve hypersensitivity but I’m not even thinking of having symptoms, they just happen and only stop when I stop with what’s caused it. But it takes at least a couple weeks to a month to start. I am on famitodine, amitriptyline, and hydroxyzine for my mcas. I also have been strongly suspecting ME/CFS since the longer I’ve been on this feed, the more severe my fatigue is and I’m normally home bound. I’m basically resort room bound now since I didn’t have a choice.

Just wondering if anyone else has had formula and needed to switch. I’m on nutren 1.5, 5’1, and 120lbs(yay!)

Ok, first some background (again, skip the list if you want):

• got covid 10/23, seemingly fully recovered in 2 weeks, it messed up my guts mostly
  
• 3 weeks after covid my minor wifi sensitivity increased a lot, i could not use wifi at all.
  
• 6 weeks after covid i try to detox from wifi for 2 weeks, after that things are back to normal
  
• 8 weeks after covid i get a yersinia enterocolitica infection from eating cooked food out (probably salad or sauces). minor 3-4 days of diarrhea, but leaves behind reactive arthritis on the knees (still present in some form), never had this before.
  
• 12 weeks after covid i get a colonscopy, with prep, and probiotics after. for 6 weeks i feel fully fine minus the arthritis still present.
  -4.5 months after covid i develop a pain in my back, quite superficial, between left shoulderblade and left collarbone, that exacerbates with specific arm positions (such as typing at the pc), it slowly improves itself. My guts health and poop begins to deteriorate
  -7.5 months after covid, suddenly (initially i thought as consequence of a minor blepheritis, but clearly impossible), i develop progressive and severe CFS and PEM symptoms, panic attacks (but i had some signs of this for maybe 1-2 weeks before, i just didn't know what it was as i never had it before), muscle pain, some sort of kidney involvement, etc, elevated creatinine, CPK (within range), inversion of leukocyte forumla (retrospectively suggesting possibly herpetic reactivation).
  ~8 months after covid i take 10 days of doxycicline. During which i feel generally better, but the effect ends after 11h from each pill.
  
• after this i start to develop groin issues and only towards the end of june i realize there is a swell on my right epydidimus. Sperm odor also modified, smells stronger of ammonia. Sweat odor also begins to modify, turning more poop-like (it will worsen later on, with only sporadic moments of normalization -few days-).
• End of july, whole august i spend in a room with AC on all time (i cleaned the filters but i suspect the unit was never cleaned). In this period the problems at the epididymus worsens. So far i had no change to my diet, eating plenty of fermented diary, beans etc.
  
• Mid september while staying in a place that gets water infiltration from the outer wall due to heavy rain, i develop VZV reactivation. few days after mold on the bedroom wall appears. I move out of there, treat the mold with a chlorine based product, and rarely enter it back, keeping shutters open and door closed at all time. At this point i also develop a needling pain to my left thumb, that is only occasional at start and resembles a foreign body in the thumb or something.
• Mid october i start to worsen, with headaches, shivers on both sides of the face, also rash on both sides of the face (with VZV it was only under my right eye). I eventually discover only later the headaches were again re-developed ipersensitivity to wifi.
• I get misdiagnosed repeatedly (even VZV passes undiagnosed), eventually i get a 1 month therapy of doxycicline again, with which i feel better, again, for 11 hours each pill, that i start 11/19 when the symptoms were no more bearable and i didn't know what else to try.
• during doxy my epydidimitis improves for like 10 days, confirmed 11/30 with Ultrasound, then relapses (while still on doxy). as of 11/30 prostate is ok.
• i stop doxy 12/18, i am not cured but everything seems more or less bearable. 12/22 i mistakenly use my left thumb to press something hard, and i feel a strong diffuse pain at the thumb. from that night on i develop needling pain mostly on the left side of my body (starts from penis, extends to left shoulder, left armpit, arm/elbow, hip, knee, foot) similar to what i have on the finger. At this point i believe it must be some foreign body in the finger.
• 2025.01.21 after seeing a "doctor" claiming to have found a 1mm foreign body in the finger with ultrasound, i am told to soak that finger in hot water with salt. I do this for 2 hours, after which i literally begin to die. I feel thrash for 2 days straight, i take blood test the next day, creatinine, CPK, ESR shoot over limit. I repeat 2 days after, values are even worse. I am traveling after this in really poor conditions. I also start developing Terry's nails.
• 2025.02 i moved to a really cold place, and it seems that freezing temperatures of the outside help me with my condition. One day after almost freezing my hand i felt almost ok for 2 days straight.
• 2025.03.10 I am diagnosed with MCAS; prescribed LDN etc. I test low in DAO, am told to change my diet. I eliminate fermented/aged cheese, beans etc. I also start pacing. My condition becomes manageable, blood tests improve (esp. CPK). Foam in urine decreases, and some days it's absent. The swell on the epididymis is still there but i don't feel pain, i can sleep left side or right side with no issue, sperm odor seems normal (sweat odor improved but not "mine" yet). I don't start LDN right away as it is messing up my sleep. But it seems to help a lot.

"fast" forward to last 2 days: i have very recently started with LDN 0.1mg that is helping me further, together with the rest of the supplement stack. I feel in a state that is mostly manageable. After i started LDN even my left thumb/index that were problematic before and required me cooling them down during most of the day have improved and now i can sleep almost normally, just keeping that hand out of the blanket.

Yesterday evening i had, among other food, 2 eggs. And i now realize i started to feel worse after. My hand, my testis.. First half of the night i had light pain on my testis and on the left hand's fingers. But it eventually improved at the end of the night. Both of them.

I didn't yet write that i had 3 bacterial sperm cultures between 2024.09 and 2025.01, one sperm gram, and a sperm culture for fungi last month, and everything came out clear. I also tested for stds, all clear. I also had a urine PCR std panel a couple of weeks ago, again, clear.

In 2024 I have seen 6 different infectious disease specialists, took tests for most diseases, all clear except Yersinia IgG. (no borrelia, rikettsia, bartonella, etc. Only one untested is babesia, but i have never been bitten by a tick in my life).

At some point i began to believe this issue must have been doxycicline related, as it started after the first cycle. But now I start to wonder: could this issue with the epidydimi (i started to have it on the left side too, in lower amount, lately) be MCAS related? I searched a bit and i found this: https://www.reddit.com/r/MCAS/comments/14qgf92/testicular_redness_and_itching_could_it_be_mcas/

I don't have scrotum problems, but i do have needling pain on the penis itself occasionally (actually it's where i had first, the 22nd of december), i suppose on cortisol release? idk..

Has anybody had anything similar?

My partner has been on ketotifen for 9 months now with no problem, increasing the dose always made them feel much better, very minimal side effects. A few weeks ago, they noticed they were starting to feel worse after taking it, so reduced the dose. It maybe helped for a bit, but now they're feeling awful after taking it. Their hands go ice cold like their blood pressure is tanking, they feel intense fatigue, brainfog, eye itchiness, etc. We're not sure what's wrong, if it's the long term use, their MCAS getting worse and reacting to the med, or their dysautonomia worsening and it being triggered by the ketotifen. Has anyone else been on ketotifen for a long time and suddenly gotten bad side effects? They've similarly started feeling much worse after Cromolyn, which makes us think it's more to do with their condition than the medicines.

I’m fairly certain I have MCAS and am going to my doctor about it next month. I’m worried he won’t know much about it so I was wondering if there were any tests that might be helpful that I should push for.

Also if there are any tips or links or anything for newbies (I’ve dealt with it for a while and haven’t figured out how to feel better, just realized my problems could be MCAS recently), I’m open to them!

I noticed that certain fabrics make my throat get itchy and hot. It’s almost like I can breathe in the fibers of the fabric and it gives me a sensation like my throat is closing up. Does anyone else get the sensation like you can breathe in the fibers? It’s such a weird feeling.

How do I get rid of the itch? The only thing that has helped me so far is getting under a cold shower but I cannot do that when I’m out and about.

My head is already starting to itch an incredible amount again and it isn’t even warm yet. I don’t have eczema or psoriasis or anything, and since finding out I most likely have MCAS I feel like that might be the issue.

I have been told before it was a yeast infection and got a special shampoo for it but that never worked so I don’t think it’s that.

Is this MCAS? Is this something I can get help for? Anyone with tips? I am absolutely dying, I already hate it so much and it isn’t even hot and sweaty weather yet😭

Hi guys! Need some help. My immunologist told me to try loratadine to see if it helps my symptoms. I haven’t been diagnosed because my tryptase is normal apparently but my symptoms are so bad. I never get anaphylaxis though. My main symptoms are:

Edema all over,Facial flushing (new symptom), Severe heart palpitations/struggling to catch my breath sometimes, Brain fog, Lightheaded/faint feeling, Confusion/memory loss, Fatigue, mucus in nose, Itchy skin sometimes/sensitive to products, Intolerant to many supplements/adverse reaction to meds, Mood swings and probably more. But mainly it’s the heart palpitations and body puffiness with the rest that affect me a lot.

I’ve ruled out so many other things and keep going back to histamine and MCAS.

Anyway my question is, I see the specialist again next week and if he makes me retest for some things is it a bad idea to try loratadine again? It just made me sleepy but he said I was supposed to take a high dose for a few weeks to see if it helps. I don’t really know whether to bother trying if I get more tests done because I assume I have to wait for the antihistamines to be out of my system. Thoughts?

Also, anyone know the dosage to try to see if it helps and how long for?

Wanted to reach out and ask everyone how they are doing and handling everything. I had a rough weekend and Monday officially had my MCAS problems affect picking my kids up from school so it hit me pretty hard.

Just wanted to take the opportunity to check in on you beautfiul souls, and create and ranting/venting opportunity if anyone needs it.

I'll listen and reply. ❤️

Also I try and create a positive loving vibes on my tik tok handle. Recently started to post stuff about mcas and meal ideas. @blossomyourlight94

Anyone else had neck pain and stiffness following xolair shot?

I'm on month 3 of xolair. So far it's only made me feel worse with each month bringing a different set of complaints. Usually after the first two or so weeks the issue decreases but never goes away. Then the next shot adds a new issue, and so on.

For reference, I have mcas diagnosed by a Dr at Mayo. My main complaints have been digestive issues and food intolerences leaving me a very short list of what I can eat without issues, fatigue, and mental fog. When I eat a "bad" food in the latter part of the day I will end up awake all night or waking up in the middle of the night (if I ate it after 6pm) with indigestion. I have a host of other issues that I've either had so long I thought they were normal or that are just minor in comparison to the main ones.

Month 1 - increased hives and itching beyond anything I've had before. I just wanted to tear my skin off for the first 3 weeks.

Month 2 - massively increased fatigue. Prior to this I'd get a day or two a week where I at least felt like I could do a bit around the house. Now, I'm back to struggling to even get out of bed. But, I can at least sit up which is better than those 3 weeks.

Month 3 - I wouldn't say I've had one single major issue get worse. The only new issue is I get random bouts where my neck hurts and gets stiff. This started almost immediately after I got the third shot while I was still in the office. It almost feels like muscle spasms.

And, I'm not sure when these issues started but they've been much worse since the last shot. Food intolerences - most of the foods that were safe aren't anymore. Having more allergy type reactions (scratchy throat after eating many things). High blood pressure (and generally labile pressure) and dysautonomic responses.

Fun times.

If I have alcohol, pop, energy drinks, or fast food, then I get dry mouth, insomnia, heart palpitations, and I constantly have to pee. Same with a lot of medications. I went to the doctor last week telling him that I suspect MCAS, and he said it can be a long process to get diagnosed. First a bunch of lab work, then an allergist, and then maybe a tryptase test.

For the most part, I seem to know the foods to avoid. What are the benefits of getting officially diagnosed? I'm trying to decide if it's worth the money, as I'm sure it won't be cheap.

Thanks

I also take 1 24 hr Allegra & 1 Pepcid AC & 1 mg Ativan. I’m hoping to cut out the Ativan at some point. But I take it for the internal shaking. I’m praying the hydroxyzine will help with the internal shaking. Again , any input greatly appreciated 🙏

Hi all! I have been thinking that I might have MCAS for a while now and just saw an allergist/immunologist last week. I had a histamine test which just came back. The reference range was 180 to 1800… my morning level was 1033. This was while I was not in a flare and had taken a dose of antihistamines/PPIs (which were prescribed by the allergist due to my symptoms). This seems high to me considering this was my level one feeling good right after waking. Any thoughts on this? Do you guys have similar histamine levels? I have almost all the symptoms of MCAS, but also have Hashimoto’s and I am trying to rule out possible glucose/cortisol issues versus MCAS. Thanks so much if you take the time to read this!! :)

I need to have a CT scan done of abdomen and pelvis. I cannot see my doctor soon as it’s hard to make an appointment so I’m not sure how to directly speak to him. It’s always a nurse answering his my chart.

He didn’t order contrast after I told him about my mast cell issues but I called to schedule the scan and they said I need to drink barium.

I do not think that will go well considering I could barely drink colonoscopy without violently getting ill.

How do you guys get imaging done when necessary? Can I ask for something else?

For over 4 months I have had daily flares. I started a low histamine diet almost immediately and have been taken high dose antihistamines yet I still have all my symptoms. In fact....I'm getting more. I'm reacting to all food, medication and now vitamins. No idea what is going on. Immunology has shown up as no allergies. They can't find what is wrong and can't provide a way to treat it. My symptoms are daily and mostly oral angioedema, lump in neck under jaw (waiting on a scan), itchy skin, itchy throat, itchy neck, anxiety attacks, fatigue, some hives. The low histamine diet hasn't helped. I thought MCAS, but as the antihistamines haven't stopped it, I'm not sure. The antihistamines have helped the itching but not touched the angioedema. I'm waiting to see a histamine and MCAS specialist and waiting for results from DNA test. I live in the UK so treatment and research is limited but I'm willing to pay for private help.

Any ideas what route I can take next?

am i able to prep my cromolyn and store them in the fridge or something? i am at my wits end fighting my adhd and autism to remember to take my cromolyn before meals and also the entire chore of prepping them in water (i realize it’s not that difficult, but it’s something my audhd really struggles with)

for instance, could i use oral syringes or small bottles for each dose and leave in the fridge prior to? normally i’d love to just ask my doctor a question like this, but my allergist is notoriously impossible to reach in between appointments.

Trigger warning because this would seriously trigger my own anxiety reading it from someone else:

I just need to vent or panic vent online. I had an anaphylactic reaction to a wasp sting. Impending doom, dizziness, constant repetitive swallowing and while waiting to get an epipen injection I started having crushing chest pain. It was effing terrifying.

It's spring here and now wasps are out. But to make it worse they are showing up in my house!! Twice in the last week I have had a nightmare about wasps. Awful nightmares. And then the next day a wasp shows up out of nowhere inside our home and I don't know HOW they are getting in.

This afternoon I was about to crash on the sofa due to my horrible sleep lately. But then one of my cats started acting really weird. She was staring at a piece of a furniture or under it and then kept acting jumpy. I could not see anything. Then she leapt and swatted at something. I thought it was a big spider and I'm leaning in without my glasses looking at what I think is a big spider and then realize it's a paper wasp kind of opening up on this basket I'm storing books it that is right against the sofa I'd been sitting on for a couple of hours and was about to crash on.

Thank God my husband works at home and I called him up right away to catch it. Multiple times my kids have spotted a wasp in the house and we couldn't find it at first. Which is completely and totally unsettling. I'm losing it here. My dad and husband are going in the attic and try and find any nests. We always have tons outside. I was stung by a paper wasp for the anaphylaxis. Not that long ago I read a discussion of someone somewhere mentioning they had spotted a wasp in their bedroom and then couldn't find it. They went to sleep and were stung in their sleep.

It's destroying my sleep which was already bad and seems histamine related. But my uncle has a severe anaphylactic allergy to honey bees. Last year he was stung by a honey bee in his bed while everyone else was out of town, except his disabled son needing full time care. It was a home care aid that found him unconscious in his bed and in a pool of his own vomit and he spent several days in the ICU.

I have a lot of health problems. And I also have severe health anxiety for what seem to me obvious reasons. It's hard to keep telling yourself everything is anxiety when it's repeatedly NOT anxiety. It's an allergic reaction or it's a severe health issue that's being ignored and I'm super anxious dealing with it on my own till I finally get help. I just feel like crying. I want to go to a hotel. I want to be able to relax and feel safe in my own home.

I would like to ask them for Crommelin to help with my histamine dumps. Is this something that they do? Does anybody go to a rheumatologist for their MCAS? TYIA 🙏

Does ketotifen cause weight gain at all?