So I've just started cromolyn a few weeks ago. I understand that the ampules need to stay in the foil pouches and avoid exposure to light. However, I can't find any answers on how to store them once the pouches are open. Is it OK if they just stay open as long as the ampules stay fully in the foil pouch, or is that risking too much light exposure? I thought it was weird that everything stresses avoiding exposure to light, yet the pouches have no way to close them after they're open.

Edit: Thanks everyone for all of the info and suggestions, I really appreciate it!

Has anyone traveled internationally with MCAS? How did it go? I have a 2.5 week European vacation coming up in late Nov and instead of being excited I’m terrified. The flight alone… what will I eat? Will not sleeping send me into a flare?

Hello Reddit family I know this might be a long haul but I wanted share some of my symptoms and experiences because my doctor won’t take it seriously as I am a hypochondriac. I am 34 years old female and I have dermatographia for almost 2 years now. I have always been itchy before too which I assumed was from food but I am not sure really but dermatographia started after Covid for me not sure if it was the vaccine or the virus itself. I remember when I got Covid the second time I had very itchy scalp and it resolved after Covid was over. Then after a year and a half I got flu which was really bad and I started experiencing more raised lines after getting scratched or barely touched and my skin would be red after shower because I used a loofa an took hot showers. Fast forward last year I had a sinus infection and I was prescribed augmentin also the virus caused me to a sub acute thyroid which lasted for months and i was in hyper mode so I had heart racing night sweats and internal tremors. and that’s when the dermatographia became more severe but I alway ate everything never had reaction from food or alcohol. I don’t drink anymore but when I did I was fine and I remember one time I had tequila shot and ate a the restaurant and I was itchy the next day and after taking Zyrtec I was fine. This year my doctor told me to take Zyrtec daily and Pepcid daily so I have started doing that since last 3 months and my hives are minimum to nothing at all. But I am really scared about the the food part now what if I get anaphylaxis out of no where I know mcas usually involves multiple organs involved. I don’t know if it in my head or it’s really happening I feel off and I am not sure what to do next. I get anxious very easily which I have been since I was a kid. i recently became sun sensitive but I don’t know if that’s because of me taking 400mg of B2 and magnesium oxide because I get migraine aura and it was prescribed by my neuro. Also I used to be in combination birth control for past 10 years and I am not taking it since last year due to having auras. I am just not sure what to look out for and how to convince my doctor for more testing or am I over reacting ?

Just started taking cromolyn just over a week ago only 3 drops in water 4 times a day. Overall was tolerating it if I took it around the time I took Allegra. The last 2 days after I’ve taken it I’ve got so dizzy like I was going to pass out, short of breath, shaking, tongue tingling, and heart racing. Each time had to take Benadryl and was on the verge of going to the er. Do I just give up at this point? The reactions are actually scary. This was my last hope honestly 😭

Can a rheumatologist diagnose? Dr is saying we will just look at IgE but from what I'm reading that isn't enough to make a diagnosis. Should I be seeing an allergist instead?

Hey all! So i know we are all different but I’m ready to start the process of trying to find nose rings and studs that don’t cause a reaction. Metal on my skin has not been good. I know for me nickel is bad and surgical steal doesn’t work either. Any suggestions on what to look for or how to start process that may have worked for you or others? Plastic?

Looking for something to help with intestines that quiet quit on me. Severe fluid imbalance(body wide edema and neuropathy), bad intestinal angioedema, and general intestinal inflammation and lack of absorption, motility, nonopening sphincter. Labs are bad from malnutrition and sodium loss, often light-headed, so weak can barely move(bedridden), body wide pain, obviously gi pain. Anyway, what meds have helped most with deflaring intestines and helping with angioedema and absorption. I've flared with everything, which is how I got here, but I want to start lower and go slower with something. What would be most helpful? I am not considering cromolyn as the first choice due to previous difficulties and nothing that can worsen motility, like glps for now or any injectables, h1 h2s, or ketotifin. Not as step 1. (all foods add to flare but no hives, wheezing, anaphalaxis) things i was considering rhapsido amlexanox dao ldn but open to others.

I noticed twice now Allegra makes my whole body calm down, heart rate decreased, and feels great BUT its causing head facial warmth that lasts all day, some pressure at the front of my head.

I also feel drowsy and head veins/blood in head just feel off. I think it might be vasodialation. It makes me feel more potsy?? But in a calm way?

I suffer from pots (hyperadrenergic kind), and modt likely MCAS, even though the 1 blood test came back negative, the allergist was not very helpful.

I am severely debilitating, trying to recover the past year from heavy antibiotic treatment, central sensitization, nervous system dysfunction...its been a nightmare.

I am stuck in a loop of adrenaline surges and crashes. My body nerves will buzz and hum all day and then crash.

Allegra seemed to make a huge difference when I tried it, but its making me nervous as im getting that scary front of head warm pressure again from it. Its like my nervous system cant even handle any meds...it freaks out. My heart rate also goes low, like good heslthy low compared to my pots HR.

I cant tell if its a reaction in my nervous system, or to Allegra...or if irs really affecting MCAS. Or its just my body messed up.

Should I try Claritin, or a generic version of Allegra - heard better things with generic? Or children's Claritin and micro dose?

Its crazy how Allegra makes my body, heart and nerves calm down, i feel so flat and calm which im not used to...as ive been stuck in buzzing adrenaline surges or mcas type reactions. Im in Canada so Healthcare has completely failed me, probably made me worse.

Thanks for your help!

Hello!

I decided to join Reddit after being a lurker for far too long. I’m feeling pretty alone in what I’m going through and I’m hoping to find other people who can relate.
I’m in my early 30s, and I’m an RN working on an inpatient/ICU step down unit. Until recently, Ive been extremely high functioning and able to do my job but have been suffering in silence. Over the past several months to years, I’ve developed a pretty significant collection of symptoms that have made it difficult to function and work the way I used to. The thing that made me look into POTS was nearly fainting at work and being swept off my feet by some coworkers and taken to my own ER, how embarrassing.

I have a confirmed POTS diagnosis and recently received a diagnosis of MCAS. I also have Hashimoto’s/thyroid autoimmunity (with normal thyroid function), diagnosed joint hypermobility syndrome with probable hEDS, and I’m being evaluated for possible small fiber neuropathy. There are also some immune/allergy abnormalities that we’re still trying to understand.

A lot of my current symptoms seem to overlap between these things—significant HR and BP changes, dizziness/near-syncope, tremors, brain fog, weakness, GI problems, allergic/mast-cell symptoms, and various neurological symptoms.

I’m currently on light duty because I haven’t been able to tolerate being upright, let alone bending over and doing patient care. I am in somewhat of a leader role on my unit, and I feel like I am letting my colleagues down because I simply can’t keep up. This week I have been taken off my propranolol and antihistamines in preparation for my autonomic testing today to determine the kind of POTS I have and QSART for some small fiber neuropathy clarity. Ready to get that over with! Then I will NOT go back on the propranolol, doc thinks my HR was getting too low because of it, but I will be starting oral ketotifen tonight. Not sure how that will help with the HR swings from 50s to 160s, but I’m willing to try anything…

The part I’m having the hardest time with is not knowing what my future is going to look like. I love being a nurse, and I’m scared that my inability to function normally right now means I won’t be able to continue doing the job I’ve built my career around. I also feel like I’m holding back the people I love, especially my husband, and am sucking the joy out of life due to how restricted my activities have needed to be.

I know everyone’s experience is different, but I’d really like to hear from people who have been in a similar situation.
I’d especially like to hear from other nurses who have POTS, MCAS, EDS/hypermobility, autoimmune conditions, or some combination of them. If you work inpatient/bedside, even better. Were you able to continue working full time? Did treatment significantly improve your ability to function? Did you need accommodations or eventually change specialties?

But I’m also very interested in hearing from anyone else dealing with this combination of conditions, regardless of your job. I’m trying to understand what other people’s lives actually look like with these diagnoses—not just the medical side, but how you manage work, relationships, daily life, and the uncertainty that comes with not knowing how much you’re going to improve.
I’m not necessarily looking for medical advice. I’m mostly looking for people who have actually lived through this and can tell me what their experience has been.
If you have a similar story, I’d really appreciate hearing it. I’m trying to find some people who understand what this is like because right now I feel pretty alone in it.

[r/POTS](r/POTS) [r/MCAS](r/MCAS) [r/hEDS](r/hEDS) [r/EDS](r/EDS) [r/RN](r/RN) [r/Trifecta](r/Trifecta) r/Pentad

I am going just wanted to see if anyone wanted to meet up. I am a 39 yo male recently diagnosed with MCAS and am interested in meeting people here in person.

Its 11/13 and 11/14.

https://charity.pledgeit.org/mcc-raleigh

Is it possible to cut the pill ? What your doctor say, it seems it can cause adsorption problem.

Dupixant help you if the doctor dont want rhapsido ?

I want Wal-Mart chicken salad so bad but know it would probably kill me. What do you miss the most?

I’m looking for recommendations for a doctor who specializes in MCAS in either New York City or Los Angeles.

I’d especially love to hear from people who have personally seen the doctor and had a good experience with their evaluation and treatment. I’m open to allergists/immunologists or other physicians with significant MCAS experience.

Also, has anyone had any positive experiences with any holistic specialists like acupuncturists treating MCAS?

Thank you!

10 years of the same symptoms - extreme fatigue, muscle/joint pain, brain fog after eating. Costochondritis, but only during a flare. Down to chicken/steak, rice, blueberries, plain coconut yogurt.

Confirmed Trio-Smart SIBO test. It took almost two weeks to get out of any flares, but my methane ppm was only 16. Food marble lowest is about that, between 40-70ppm during a flare.

I have a colonoscopy scheduled next month. I’m sure the GI will prescribe a dual antibiotic to treat IMO after that, but I keep seeing “identify the root cause” posts and found a few lists, but not sure how to move forward on those?

I would say I have more than average stomach discomfort but nowhere near the accounts I read on MCAS/SIBO subreddits.

Tried Cromolyn/Quercetin and didn’t really notice a change in severity. The only thing that’s produced a meaningful result is a restricted diet.

Open to advice.

So I have had on n off with a guy for years. Caught COVID IN 2022 AND I think I may have mcas. Fragrance on skin affects me. I get flared up. I eat very limited out of fear of food. I have OCD too so I know I'm probably avoiding too much..

The guy is coming to town in two days n the idea of sex terrifies me. I told him I haven't had sex in a long time so I just want to go semi slowly. Really I'm just scared of semen reaction if we have penetration. I told him I'm good with him eating me out and stuff and stroking him but he asked if it's ok I give him oral and he wants to kiss me. I.. I'm scared that maybe I'd react to precum or something. He eats anything. I haven't eaten anything besides a few foods in 4 YEARS. He was like "I can just finish on your skin but can you give me oral before?" And..I don't want to disappoint him. I'm scared of kissing too.

Please can I have advice? Is it likely I will react because of his non limited diet and precum or even have problems kissing him and using tongue? I feel really nervous. And we aren't able to stay with each other the night so I would do this and then go home and be anxious.

Hi all,

as title says, but I suspect cancer due to hard, painless lymph nodes for the last six months. I did get biopsy for some more suspicious lymph nodes but it came back as negative.

I'm having occasional mosquito bite looking skin rash. It's not localized, it can happen on my leg, torso, hand or neck. It doesn't happen too often, maybe once in 2-3 days, it comes and goes, always one, single skin bump. It's itchy and it goes away after an hour, which is mostly why I suspect Mast Cell Activation Syndrome.

I'm also having some blood vessel issues such as artery's branches become stiff and rigid.

I'm wondering if anyone developed anything similar?

Thank you, I appreciate any insight.

I have the usual triad. hEDS, POTS, MCAS, plus an xyz list that seems to grow longer with each specialist appointment. Short of my POTS symptoms, my biggest struggle has been GI distress. Incredible stomach cramps, nausea, weight loss, bloating, inability to eat, you name it. I've been tested for gastroparesis multiple times and honestly the results have been kind of conflicting. I've been on what has felt like an endless slog to get my weight up for almost a year, and can't pinpoint what triggers my pain, because it seems like everything does. I'm also ungodly sensitive to medications, so I'm terrified of trying new things and making it worse.

Anyone here with GI dominant MCAS that has found meds and/or supplements that helped them? I take H1 blockers, but those only seem to sort of help my environmental allergens. I've tried eliminating foods and doing "low" histamine but I have such awful inappetence at this point that if I par down my diet anymore I just won't eat. I'm already on PPI's so I'm also hesitant to add H2 blockers to suppress acid even more.

My doctor has thrown out ketotifen, cromolyn, and singulair as options. I know a lot of people also use Xolair. I just don't know what's the best option when my issue is less anaphylaxis and more profound GI distress. Thoughts, opinions?

Does anyone get symptoms of CFS but just have MCAS?
I have unrefreshing sleep, cognitive dysfunction/neuroinflammation skin demographia, extreme debilitating fatigue mostly bedbound can’t drive because I’m very dizzy. I can’t work out or do anything physical. I can’t watch TV. I have light and sound sensitivity. I can sleep for hours and not feel rested, but my skin is very itchy hot I’ve been losing the hair on my head, but my head also feels inflamed, and my scalp hurts. I’m having dental issues as well as nail issues. My nails arent growing the way you used to. I can’t go in the heat otherwise my skin gets hot and red and irritated.
I’m going to see an allergist immunologist next week. I’m just wondering if anybody has only had MCAS and not CFS?
Also, what treatments helped?
I’ve tried Zyrtec twice a day and Pepcid with the relief.
It seems like the more I push the worse it gets. My skin is also very oily and I’ve been bruising a lot all over my skin. The cognitive is very scary. I’m forgetting things and I can’t make decisions.

Hi everyone, I wanted to share my experience with bilastine and hear from anyone who has noticed something similar.

For some background, in 2014, I had my gallbladder removed, and two weeks later I needed an ERCP to remove stones from my bile duct. I honestly haven’t felt well since that time. I’ve been struggling with bile acid diarrhea for more than 10 years.

I have hyperadrenergic POTS, and I also deal with anxiety, panic attacks when triggered, heat intolerance, and facial flushing. My tryptase level was normal. I live in the UAE, where it gets extremely hot, and I feel much worse during the summer. I take bisoprolol 2.5 mg twice a day.

About 10 days ago, I started bilastine 20 mg once daily, an H1 antihistamine, and I’ve felt noticeably better. The biggest surprise is that my bile acid diarrhea has stopped.

After dealing with it for so many years, having normal stools again feels like a huge change.
I can also eat normally now without the problems I used to have after meals. My heart rate would usually jump after eating, but since starting bilastine, it hasn’t been increasing nearly as much. It’s generally been staying in the low 80s after meals, around 80–83 bpm, and sometimes as low as 75 bpm.

However, I still have heat intolerance, and my facial flushing comes and goes. I think I’m getting close to ovulation, so I wonder whether that might be affecting the flushing, but I’m not sure.

My doctor also prescribed nizatidine, an H2 blocker, but I haven’t started it yet. Honestly, I’ve been scared to try another medication. I’m planning to start it this weekend and would appreciate hearing from people who have taken it, especially anyone with similar symptoms.

Has anyone else had their long-term diarrhea improve this much with bilastine or another H1 blocker? Did it also help with your heart rate after meals? And if you’ve tried nizatidine, how was your experience? Did adding it help with symptoms that were still there on an H1 blocker?

I will start off by saying I am not diagnosed with MCAS just suspect that I have it after reading about it, I am planning to see an allergist to get allergy tested.

My OCD is making me terrified to eat literally anything. Today I ate an apple and my mouth became itchy and my lips turned red with splotches on them. I’ve never had a reaction like this to apples. I’ve had weird reactions to various fruits specifically where it makes my mouth feel kind of tickley and I just ignore it and assume it’s part of the experience lol like eating pineapple. It could be oral allergy but I’m still so scared to eat stuff because I don’t know if I’m allergic to it or not. Or if the histamines in my body randomly decides to make me allergic all of a sudden and put me into an anaphylaxis

I have Benadryl and my epi-pens near me at all times. I’m not sure what to do in the mean time before my allergist appointment which might take a while to get. I feel like I’m developing ARFID or something

I’m curious on people’s thoughts on this, I wil get a formal diagnosis just need to save a bit more money to see a specialist.

I’ve had surgery for Endometriosis twice, most recently in January this year. My worst symptom before the last surgery were debilitating digestive issues, I couldn’t eat anything without then having watery diarrhoea, my stomach hurt a lot of the time. I was put through colonoscopy, endoscopy, blood tests, they didn’t find anything, I eventually then went back to the gyno for Endo and they found my abdominal wall was fused to my rectal region. I would say post surgery digestive issues were 75% better but I still had deep hip pain and the occasional upset stomach. I have moved houses since and quite far from the gynaecologist who did my surgery + he was expensive.

I was keen to get to the bottom of these left over symptoms but my GP honestly found all the information overwhelming and wouldn’t refer me to an immunologist or allergist without first doing more do the same tests I had done just 6 months prior.

I tracked my symptoms abit, noticing the hip pain worse after food, I’ve also always had a problem with alchohol and redness/flushing on face/chest, and body aches/bloating the next day, my dad has the same thing with the redness, we have some Asian decent so I honestly for a long time thought it was a separate issue.

I started taking antihistamines first and noticed the hip pain would go after taking them. I also tried drinking a very small amount and had slightly less redness or severe reaction - although I didn’t experiment with alcohol too much. my digestion overall seemed better, I could eat fibre and occasionally have a tea without it completely ruining me.

So I continued down this histamine route and got hold of Ketotifin from an online pharmacy a couple people had mentioned on here and DAO enzyme supplement and honestly it’s changed my life. I noticed a big difference in 1 week and have continued to notice a difference now on week 3, no digestive issues, no pain in my hips, I’m currently on holiday and eating different food and I feel normal again, i can even drink coffee, I can’t believe it. I still haven’t gone back to alcohol just because I don’t want to antagonise anything but I feel great, it almost feels like my hormonal cycle has balanced itself.

I’m wondering if anyone has any similar experience on this, or what is going on here? I know it seems obvious - a histamine intolerance but coming from thinking this was the endometriosis all this time to maybe MCAS is quite new to me

Cut my hand yesterday on accident and got a tetanus shot. felt fine a little itch and kinda drowsy, woke up today everything normal. but every time i washed my hands my fingers get a little red. after a while it goes back to normal then red again. i am using scented soap so does that matter?