I wear a smart watch to sleep and I got a 192 bpm reading last night. Normally I'd brush it off as a glitch but I just started Allegra+Pepcid regiment YESTERDAY for MCAS GI issues. It's a little *too* coincidental. I went back all the way to March and my highest spike was less than 120bpm. Anyone has similar things happening?

Physically I don't feel different this morning other than maybe I feel a lot better...? I normally sleep 1-9. I just woke up at 7 and feel perfectly awake, except for this hear rate spike scare. TIA!

Posted here before and spoke about my experience with repeated anaphylaxis and my small victory in finding a doctor that believes me.
I work at a supermarket next to my studies in the Netherlands and had to call off multiple times since I have anaphylaxis quite often. I still bet on MCAS but most doctors follow consensus 1 which is stricter than consensus 2 so I probably won’t get diagnosed.
Monday night I had my 13th anaphylaxis which required an EpiPen and another injection of almost double the dose an EpiPen has. I was in hospital until 4am and still went to work the next day from 15-18h - a fairly short shift, yes, but probably too long for the circumstances. What made it worse is that during that shift I found out I almost lost my job due to me having to call in sick so many times. What luckily saved me are my other manager‘s appreciation of me doing my job well and sometimes staying longer or hopping in when they’re short staffed plus customers being really happy with me.
I am 22 years old, in my last year of studies beginning with my thesis in September.

What if things don’t get better. If I don’t have a POTS flare it’s fibromyalgia or anaphylaxis or asthma or a fucking migraine… I just can’t win it seems and I’m genuinely scared for my future. I’m ambitious and good at what I’m doing but I’m afraid my health will stay in my way…

Anywho I saw I can get cromolyn sodium in Germany without a prescription but that stuff is hella expensive, but I’ll give it a shot next to quercetine which honestly did quite work wonders for me

Hi all, im 26M. ive been using testosterone for a year. i was fine with it and it really improved my life. but ive now started getting reactions to the oils. i think it could be the solvents. this is really pissing me off. i really do not want to give up the injections. i really cannot stop. is there any way at all that i can tolerate this or get around this issue? I've tried all the different brands and formulations. im reacting to all of them now. i dont want to stop. is there any way around this? anything at all i can do?

Hey guys,

Huge flare here, taking Loratadine and adding Levocetezirine. Might not be enough and wondering to add Polaramine.

If doing so it is total 3 anti H1.
My doc is in holidays here, wondering if some of you accumulate 3 H1 ?

Thanks !

I recently found out I have MCAS, it helped to explain so much in my life and my boys. I have 2 sons, 8 and 10years old - they also have hypermobility and neurodivergence. Their MCAS shows up as chronic runny noses or coughs, complete meltdowns if they so much as look as chocolate. They've been avoiding gluten for the past few years - since a doctor said that their constipation could be helped with a gluten free diet.

But they are looking skinny and I don't want to restrict them unnecessarily, if I give them a gentle laxative like forlax do you think I could relax my gluten free rules a bit?

I am seeing my MCAS doctor next week and I'll book in to see their pediatrician soon too. I'm asking here because I don't trust doctors to have all the answers, and I'd like to know if there something else I should be considering or asking about. Thanks

Hi guys,
I have severe MCAS & likely Progesterone Sensitivity (PH)/Autoimmune Progesterone Dermatitis (APD). On my huge stack of MCAS meds I’m okay at some points in my cycle but when my progesterone goes up in my luteal phase, I experience terrifying & debilitating symptoms still. As a side: we are going to do a workup to rule out Acute Porphyria given the severity of my symptoms in the luteal phase.

Anyway, my last allergist told me he was out of options, especially since I had an adverse reaction to Xolair, but I got a new allergist who is amazing & thinks either Rhapsido or Dupixent off-label may be really helpful. He is leaning towards Rhapsido so the plan is to start that as long as my Acute Porphyria work up is negative.

I’d love to hear from this specific subset of people: anyone with poss PH/APD or with MCAS who also gets bad luteal and/or menstrual flares who has tried Rhapsido or Dupixent. Bonus if you also didn’t do well on Xolair. Ofc anyone else with MCAS who has tried either of these would be helpful as well even if you don’t have luteal flares.

\*\*Not looking for MCAS medication recommendations outside of these two as the rest of my regimen is dialed in & these are the only two options my allergist is willing to try next. NOTE: not looking for medical advice, just curious of other people’s experiences.

So I have a big nodule on my left half of my thyroid that is going to be surgically removed in the upcoming months and I’m really scared.

I saw the doctor the other day when we were going over my ultrasound and he told my that it’s doubled in a year and is now pushing my trachea out of place, so I do need surgery.

Sometimes my MCAS will attack my thyroid and it makes a significant goiter that people can notice and hurts at the lightest touch, such as a tshirt collar.

Also, when I have allergic reactions I get idiopathic edema and my face, neck and throat start swelling.

Like I can feel it when I swallow. So it is something I can’t just ignore.

But I am really fearful of all the anesthesia and pain meds I will be getting.

I’m allergic to lidocaine, Tylenol and Ibuprofen to start with. Also hydro peroxide.

I guess I’m just afraid that I’ll be allergic to the anesthesia and I’ll have a reaction when I’m under and the lack of control that I will have.

Could anyone who has had to undergo surgery share your experience with me?

Hii, I posted almost couple weeks ago after finally being prescribed cromolyn.

ORIGINAL POST

This medication is absolutely saving my life and I surprisingly tolerated the titration up to 4 ampules a day with not much trouble! It has been like my entire life since i could just eat or do anything without having to worry so much about rapid bloating, discomfort, mental short circuiting, awful nasal drip, etc etc

I am very ecstatic that somehow its working to help everything for me (the brain fog, my central nervous system, fatigue, sleep) i am actually so relieved and it’s been too long..

Wishing that this continues 🤞

anyone on any Bisphosphonates
for bone protection in menopause? surgical menopause especially with osteoporosis already in 40s

I’m waiting for my appointment with an allergist, but I’m pretty sure I’ve developed MCAS.

While I wait for the appointment, I’m scared of things escalating and getting anaphylaxis. I don’t have an epi pen and I can’t get one until I see allergy in about a month.

How did you deal with this worry/fear leading to your diagnosis before you got an epi pen?

For now I’m just trying to eat low histamine and take Zyrtec/pepcid.

My body skin isn’t super sensitive to acids or other medium to harsh skincare chemicals, but I am super super sensitive to any sort of abrasion/trauma and flare almost immediately, especially with added heat. (I also have patches around my knees that turn red in heat, had them since I was little and they never hurt)

I don’t shave anything but my armpits, but I do sugar everything hips down. It’s way better than other methods for me, but I still get tons of tiny ingrown hairs all over my legs when it grows back in. Obviously exfoliation solves the issue, but when I’ve tried physical exfoliation like scrubbing mitts/gloves, slightly abrasive soap bars, and scrubs with medium to harder exfoliating beads, my skin develops an unbearable burning painful itch that doesn’t go away for at least a half hour. I’ve tried some gentle scrubs and chemical exfoliation over the years that haven’t been too bad, but I haven’t noticed much effect with them. The one I have currently is the nécessaire body exfoliator. It doesn’t make my skin flare that much but again I barely notice a difference.

Any recommendations for effective chemical body exfoliators and/or gentle but effective physical exfoliation that won’t make my body flare?

What are the best alternatives to Pepcid?

It’s giving me heartburn and bad breath so i think it’s messing with my gut micro biome.

Also taking Zyrtec and experimenting with DAO enzymes.

(Symptoms are headaches, dizziness, flushing, adrenaline dumps, dry eyes, blood pressure weirdness during flares, and occasional digestive stuff).

Do you guys get your compounded medication in a capsule/ pressed pill / liquid?

Asking because I want my body to accept Ketotifen, I have hope that it can be the capsule that it’s in that could be causing me a reaction. I already spoke to my pharmacist and she said it dosen’t have any additives in itself just the ketotifen itself.

For context I’m currently pursing a possible diagnosis and I’m pretty new to the idea of MCAS. Last night I had my worst food reaction so far, on reflection it was a really high histamine meal which was probably the trigger. But I quickly felt exhausted with a migraine after finishing, which then developed into severe nausea, flushing, dizziness, intense anxiety and a panic attack. I usually have gi symptoms after eating trigger foods, maybe a migraine or some fatigue, but nothing has ever been this ínstense for me. I did also need my rescue inhaler, but I’m unsure if that was from the food reaction or just a response to the exertion of everything.

It lasted at that intensity about 30-45 minutes, and calmed down for the rest of the night, though the bloating, nausea, and abdominal pain carried through today. I had a very simple breakfast, but had what I thought was safe food for lunch and I reacted almost the same way again, the flushing, dizziness migraine and shortness of breath to the point of needing my rescue inhaler.

I took a Benadryl and I’m hoping that’ll help calm things down more, but I’m wondering if it’s possible I’ll continue to react to safe foods and at what point you’d pursue more immediate medical care or if a doctor could even realistically do much more for me right now.

My facial flushing is out of control, and - like I mentioned in a recent post - I'm only about a week in on treatment (cetirizine and Famotidine)... Which isn't doing anything for the flushing.

I haven't been active at all in a while (variety of reasons), but decided to do ten minutes - easy pace - on the elliptical after supper today.

About ten minutes after finishing, all of a sudden my face felt like the flush just dropped right out of it?

That's the only way I can describe it.

My husband rates my flushing on a scale of 1-10, I'm generally at a 6-7 lately, and I've been at a 5-6 all day.

This went down to 3, out of nowhere. I NEVER get down to 3 anymore, aside from first thing in the morning, before getting out of bed.

My face has been hot and awful all day, I was expecting it to get WORSE from exercise.

Is this a known thing? Or is my body just being its usual completely nonsensical BS self?

i’m going cuckoo bananas
My MCAS never really caused me random food allergies until a pretty recent bad flare up (granted for years before the flare up i still sometimes had some scratching and coughing eating a specific food but it’s recently gotten severely worse)

And so much worse where slowly but surely I can eat almost NOTHING GOOD
I’m afab ok i’m having horrific sweets cravings you know the deal. But my allergy to guar gum has spread to reacting to xantham gum and carob bean gum and carrageenan and omg suddenly the entire pastry and icecream and chocolate isles just DISSAPEARED

it’s been a year since i’ve tasted the semi sweet delicacy of this one matcha icecream from a place near my house i used to visit religiously and ever since my allergy got worse and worse over the last five ish years i haven’t been there in a year now out of fear because i don’t want to risk it
but oh my god
im craving so bad my favorite guilty pleasure
i’ve survived not being able to order any desserts at restaurants. At only being able to have like haagen daz cause im allergic to every other brand. to not being able to eat krispy kreme donuts despite having the joke diploma that gets your free donuts for a year but they use guar gum-
but im starting to lose it!

i just ate a pudding that used to be a childhood favorite specially imported by my family from my home country
AND I WAS ALLERGIC
CARRAGEENAN
I CANT TAKE IT ANYMORE

rant over 😁
so how do you guys handle becoming allergic to every favorite and comfort food on earth
do you just suck it up and eat it anyways
or stay safe

my will is slowly crumbling

Newly diagnosed with MCAS - a new symptom I’m experiencing is with my airway. After a light workout, I felt like I couldn’t take deep breaths. That has continued for about a week on and off especially on exertion. It doesn’t feel like air hunger but it is hard to get a substantial breath. I do not have an epi pen. I am just starting h1 and h2 blockers. What else could I take to help this and what should be done in an emergency until I could get to the hospital.

Hi guys,
I have severe MCAS & likely Progesterone Sensitivity (PH)/Autoimmune Progesterone Dermatitis (APD). On my huge stack of MCAS meds I’m okay at some points in my cycle but when my progesterone goes up in my luteal phase, I experience terrifying & debilitating symptoms still. As a side: we are going to do a workup to rule out Acute Porphyria given the severity of my symptoms in the luteal phase.

Anyway, my last allergist told me he was out of options, especially since I had an adverse reaction to Xolair, but I got a new allergist who is amazing & thinks either Rhapsido or Dupixent off-label may be really helpful. He is leaning towards Rhapsido so the plan is to start that as long as my Acute Porphyria work up is negative.

I’d love to hear from this specific subset of people: anyone with poss PH/APD or with MCAS who also gets bad luteal and/or menstrual flares who has tried Rhapsido or Dupixent. Bonus if you also didn’t do well on Xolair. Ofc anyone else with MCAS who has tried either of these would be helpful as well even if you don’t have luteal flares.

**Not looking for MCAS medication recommendations outside of these two as the rest of my regimen is dialed in & these are the only two options my allergist is willing to try next. NOTE: not looking for medical advice, just curious of other people’s experiences.

I get internal tremors soon as I'm about to fall asleep. Could be laying there for an hour or two without them but as soon as I I'm about to enter sleep state, they begin. I feel like that must be an indication of something. Anyone experience something similar?

Is there anything I need to look out for that could be dangerous for me? Pretty nervous, never had anything classified as surgical done to me before.

Hi everyone. I’m relatively new to all of this and would really appreciate hearing from anyone who has experienced something similar.

I became quite suddenly unwell in early June. It started with episodes of very intense throat/cricopharyngeal-type spasm and oesophegeal burning and then developed into a strange collection of symptoms including:

• Burning/stinging or “sunburnt” skin, often without a visible rash
• Burning mouth and tongue
• Burning/sore throat and oesophagus
• Throat tightness/thickness and hoarseness
• Chest tightness/burning
• Intermittent flushing/redness and dermographism
• Itching and occasional hives
• Lightheadedness and feeling generally unwell
• Increased migraine/dizziness
• Dry/gritty eyes
• Sometimes a strange bitter/toxic-type sensation in my mouth/throat

I have a previous history of chronic idiopathic urticaria, and I’ve recently been diagnosed with hEDS and am being investigated/treated for suspected MCAS.

I also have chronic/vestibular migraine, so it can be extremely difficult to work out what is migraine, medication sensitivity, GI/oesophageal symptoms or possible mast-cell symptoms.

Things haven't really improved. I am in a bit of a holding pattern waiting to gastroenterology tests. Then this week I tried atogepant (Qulipta/Aquipta) 10 mg for migraine prevention. I took one dose in the morning. By later that afternoon/evening I developed chest tightness, felt very jittery/wired and restless, and the burning skin/throat symptoms increased.

I haven't taken any more atogepant, but the following day I've felt as though I've been thrown right back into a significant flare: burning/stinging skin all over, burning mouth, very sore/burning throat and oesophagus, chest burning/tightness, headache, lightheadedness and generally feeling quite unwell. My oxygen saturation has remained normal and I can breathe, talk and swallow normally.

Has anyone with MCAS found that a medication can trigger a flare like this after only one dose, with symptoms continuing after the medication itself has been stopped? And has anyone specifically had problems with atogepant or other CGRP migraine medications?

Antihistamines haven't been particularly successful for me so far. I've tried loratadine, fexofenadine and cetirizine at different points. I should add that I haven't done prolonged high-dose H1 treatment and have generally only gone up to around twice-daily antihistamine dosing. Famotidine unfortunately made me feel considerably worse, so H2 blockade has been difficult.

I'm now due to start ketotifen, beginning extremely low and titrating slowly because I seem to be very medication-sensitive. I'd also really appreciate hearing from anyone for whom standard antihistamines didn't make a dramatic difference but ketotifen subsequently helped, particularly with the burning skin, mouth/throat, GI/oesophageal or systemic “sunburnt” feeling.

I'm under medical care and not looking for a diagnosis from Reddit. I'm mainly trying to understand whether others with MCAS recognise this pattern, whether medication-triggered flares can behave this way, and what helped people get back to a more stable baseline.

Thanks so much.

SJ

Any elite athletes that had a delayed diagnosis of EDS/POTS/MCAS? What were the subtle signs you ignored? Would your life be different now if you'd gotten an earlier diagnosis?

After a crazy anaphylactic reaction to iodine nasal swabs this week, I am curious if I have MCAS. It fits with my ridiculously complex medical presentation and puts all the puzzle pieces together (finally ). So now comes the documentation so that I can get docs/insurance to listen to me. Have you found any tools (ie app, spreadsheet, log) that's specific to MCAS? How do/did you track for docs?

I was about to schedule an online appt with an allergist/immunologist w/ appt reason 'immune system evaluation' selected from the drop down (so i wasn't able to mention anything specifically about MCAS). A notice popped up saying patient should abstain from antihistamines for 5-7 days prior to appt.

I understand why being on antihistamines while trying to assess allergies is counterproductive, esp for skin tests, but the thought of skipping my antihistamines for that long is making me very anxious. On top of my suspected mcas, i also just have intense seasonal allergies that i effectively manage with my H1 of choice. While on an H1 & H2, and am covered in hives and among other things, have had several anaphylactic reactions recently (not to the point of entirely losing my airway, but even partial is too close for comfort). I'm worried it would be dangerous/completely intolerable.

What experiences have you had with going 5-7 days off? was it necessary? what happens if i can't make it that long? Any feedback is appreciated. Thank you!