I have MCAS, histamine intolerance and leaky gut.

I took igg ( serum derived immunoglobulin) 1/4 th dose for a few weeks and then titrated up to full dose in a week. As soon as I reached the full dose, I got loose stool. It was like jugs of water.

I had weakness for 2 days and gut is still a bit loose.

I stopped igg right after. Does igg cause such reactions or I could be reacting to something else?

I am not diagnosed yet, but suspect I may have it. Was this something that developed over time or did you just have MCAS one day but didn't the day before?

Do you have a short video (maybe 2-10min) that you find useful to share with friends and family who have no idea what this is? Something that is easy to understand but still accurate.

I'd be interested in recommendations for longer ones, too, if you have seen many and really recommend it as the best one...but I'm seeking a low barrier for time and understanding.

Thanks!

Hi all - after years of terrible dermatographia and a very low threshold for physical stress that caused flare ups, I finally tried Ketotifen.

Took my first 0.5mg dose last night before bed, and was prepared for some drowsiness today, but I can barely function. Brain fog is INTENSE and I feel a bit nauseous too.

Also the pharmacy gave me a 3 month supply right off the bat for $225, and I’m worried I’m gonna be stuck with this large amount and be struggling on it.

I hate the idea of depending on a medication with severe side effects, but wondering how normal it is to be so out of it after just one dose. It worries me that I’m taking something that can impact my brain so hard.

Any input/ experiences/ tips would be greatly appreciated!

I want to preface that I am a firm believer that in most cases (especially in us MCAS folk), a lot of med effects are not necessarily a direct effect of the medication but rather how your unique biology interacts with it. So please know I am not saying Xolair *caused* all of the following, but it has clearly in my case contributed as my immune system shifts.

Since starting Xolair a few months ago, my appearance has drastically changed for the worst. As someone with previously clear, dry skin and thick hair — I have developed tiny pimples all over my face. My face and scalp are severely oily. My hair used to go days between washes, now I need to wash daily to avoid grease building up. My hair is also naturally curly and it has been extremely thin, flat, and frizzy.

This really has taken a toll on my self-esteem. Honestly, if the tradeoff were that I had less symptoms, it could turn me into a frog for all I care and I’d just live with it. But the fact that I’m dealing with bad side effects and now this too, I think it’s just not the treatment for me.

I wanted to share in case anyone else can relate — no you’re not crazy!

I have always experienced that crawly feeling your skin gets when you have the flu, but I always thought it was random. And it never was accompanied by fever, so a complete mystery.

Nowwww I'm wondering if all those times were during histamine flares/MCAS triggers. (I only found out I have MCAS like six months ago.)

So I thought I'd post here and see if this is a symptom others have experienced?

I've recently developed intolerances to many foods and water I've tried to get in with my family doctor and my specialist but with no luck any advice I don't want to just go to the ER as I'm not actively swelling or flaring. But I'm not sure what to do at this point

pretty much what the title says. i started montelukast at 5mg for three weeks and have been taking 10mg for a week. it has helped me so much, but the only problem is that it gives me really intense/vivid dreams and nightmares. i take it in the morning/early afternoon but that doesn’t seem to help

is it likely that this side effect will fade away? should i switch to a different leukotriene inhibitor, would that help with the side effect?

For context- I have MCAS, POTS, hEDS, and a few others. I was prescribed fludro and am worried about reacting to fillers. I compound my LDN, but not my hydroxyzine and do alright with it. My question is- does anyone here on fludro get it compounded? What is your experience like and why did you choose to do it that way? Thanks!

Any of yall have reactions that last this long?
So yesterdayyyy around five I accidentally drank some juice with a fruit I react to (I know I need to start reading ingredients every time😭)

Only took a few sips but like a little while after my throat was super aggravated, bad sinuse drainage starting up. And literally SINCE yesterday then I’ve felt like crapppp, my sinuses are so aggravated and I feel fatigued

Idk if I just coincidentally was getting sick at the same time or if it’s just a longgg lasting reaction 😔

So I’m curioussss on if others have had stuff like this happen

Has anyone in here struggled with treating Rosacea? I started getting rosacea on my face with small pustules on my face that look like pimples but aren’t. My derm prescribed a cream with ivermectin, metronidazole USP, and niacinamide USP (inactives are BHT, glycerin, Krisgell 1000 (?), potassium azeloyl diglycinate, and suspendisse silicone gel) that almost seems to be making it worse instead of better. Beginning to wonder if this is a MCAS thing?

TLDR: Ostracized from girls nights due to perfume. Forced to leave hotel on a vacation due to said perfumes.

One of the biggest challenges for me with having my life is the isolation.

Warning:
Long venting post ahead.

This last weekend, I was supposed to go on a girls trip, staying the night in a hotel a few hours away from home.
I spent the night prior prepping food so I could eat the night I’d be away from home, and due to my sensitivities to scents, everyone agreed to not wear perfumes or other scents on the trip, a request made by the person who planned the event.

I spent hours driving to the destination, and the person I was supposed to share a bed with was absolutely coated in perfume.
Being in the room for 10 minutes made me react, leaving me no choice but to leave and drive back home. I spent 8 hours straight driving, and was absolutely exhausted.

If I was unable to climb stairs, and was asked to drive so many hours to a hotel without an accessible entrance, would they feel bad then? Would they try to ensure I could attend? Or would they force me to return home, with a quick “sorry” before going along with the fun activities of the night?

I saw a crafting meetup event on IG in my region, which I’d love to attend, but it was held at a pizza restaurant, and being that nightshades are my biggest trigger, I couldn’t even dream of stepping foot in a restaurant like that.

I can’t go get drinks for happy hour with my coworkers or friends.
When my office mates at work don’t wash their perfume off from the night before well enough, I have no choice but to find some random location in the building to work or risk a flare up from sitting at my own desk. (I’ve talked to management but the enforcement is non existent by HR)

It’s bad enough I can’t go out to restaurants, or eat anything beyond the five foods I’m stuck eating day in and day out.

I still try to remain positive in life, find the best in people, enjoy those couple foods I can eat, but the reality of me being an “other” in nearly every aspect of life is absolutely crushing and truly devastating, especially when it’s clear others simply don’t care since it doesn’t impact them.
Thank you to those that have made it this far in my venting rant; I feel like those in this subreddit would understand me better than most,

Thank you in advance!

So… last night I dared to try Montelukast after almost a week of looking at the pills. I decided to use a smaller dose to at least see if my body could handle the ingredients in the pill because that is one of my biggest concerns. I don’t take any pills other than Allegra, Vit D (because I’m super deficient), Iron because my hemoglobin is screaming, and quercetin (all with 2-3 bare ingredients).

At least I was ok last night, but I know the micro-dose is not showing the full effects. I will try this dose for a few days and move up little by little until I reach my full dose if my body can take it.

My breathing problems have exacerbated in the last few months, and it’s scary, so I feel like I have to risk it and pray that I don’t get any of the serious side effects. 🙏🏽

Just sharing because you guys understand this. 🙂

For context, cooking, hosting friends for dinner, and trying new restaurants used to be some of my favorite hobbies. I have been dealing with MCAS now for quite a few years and have only been able to eat max 5 foods for 3.5 years now. I am still obsessed with food, follow food-related content on social media, watch food travel shows, look at my cookbooks longingly... It sucks so much having a passion you are unable to engage with properly.

I do not know if this is healthy or if I should just cut all of this out of my life. It was such a part of my identity.

Anyone else experience this?

Does anyone have protein in urine due to MCAS?

I have been taking 2mg for around a month and cut down to one because every time I take it about 3 hours after taking it I get insanely tired and basically have to fall asleep. Apparently it should only last 2 weeks but mine has lasted longer. Aside from that It helps my symptoms alot

How are yall getting your ketotifen prescriptions? I know they are filled through a compound pharmacy, but my understanding is that it’s not commonly prescribed in the US (at least that’s what my allergist told me). Cromolyn didn’t do much for me, I’m looking for relief from brain fog associated with MCAS / POTS / Dysautonomia. Thanks!

Sorry if this has been answered before but I'm too fogged to read through the post history.

So, has anyone had any success to food reactions which appear as you eat and/or minutes after finishing a meal? I'm really curious in someone who can confirm quercetin alone had this effect, so someone who didn't simultaneously take other stabilizers like ketotifen or chromolyn, famotidine. Thanks.

I've been very sensitive to medications for years, and I've constantly heard from doctors that 'this medication shouldn't cause insomnia.' I kept being told to just push through, but instead of improving it almost always got worse. I'd have a hard time falling asleep, would be itchy and physically uncomfortable, and have restless sleep often with nightmares. I can push through most other side effects until they improve, but I can't function without sleep for days on end.

I always thought I just was unlucky with medications, but I've been wondering recently if its actually an MCAS reaction rather than a medication-specific side effect. Most recently I've been struggling to find an inhaler for my asthma that doesn't keep me up all night, but pretty much everyone I've seen about it acts like I'm the first person to ever mention insomnia to that degree. Is this something others have experienced? I would like to feel a little less crazy about having unique side effects. Also if you have experienced this, has MCAS treatment improved things? There's medication that I could really benefit from taking for other conditions but I can't currently tolerate.

Hi all! I have MCAS and strictly use minimal ingredient, fragrance free and essential oil free products. I've been shaving my legs with tallow and olive oil right now, which works fine, however its not good at all for the intimate regions' pH. What does everyone here use for shaving?

I used to use a shave bar soap I bought from etsy, but I realized that I'm allergic to the goat's milk or something used. If any of my personal care products contain food items, they have to be verified for zero cross contamination of things like soy or dairy etc. so I'd rather not go that route. I need to learn to make my own soap, honestly.

ps, I use the leaf 2 safety razor to avoid razor strip chemicals, and I love it.

I mean I just have to eat and drink like crazy. Sounds crazy but I just wondered if anyone else has that. I'm not sure it helps by eating and drinking but it's like an insatiable need. Especially for sweet foods.

Cromolyn package says to keep it 68-77 F (20-25 C). Anyone know what the actual upper limit and time limit on that might functionally be?

I am disabled and have been very unwell (mostly in bed since the beginning of June) so I have been keeping the medication by my bedside otherwise I won't be able to take it. I am cognitively impaired too so I've only just realized the temperature issue. My house has definitely exceeded 77 degree. Probably at least 85 or maybe even up to 90.

Package says not to take if it's cloudy or contains precipitate. That is an obvious sign that I am not seeing.

Should I be worried I compromised the medication? 😬

Since COVID in 2020, I have been suffering from severe chronic constipation with restlessness and sleeping problems. After antibiotics in 2022 and a bunch of probiotics I also developed severe food reactions with worsening restlessness, insomnia, shortness of breath, hives and rashes.

Has anyone with MCAS improved severe constipation through mast cell stabilizing treatment like Xolair or other MCAS medications? Ketotifen and Cromolyn worsen the constipation for me :(

My situation is currently very serious: constipation has contributed to SIBO and severe weight loss. due to severe MCAS I cannot tolerate laxatives, magnesium or any other medications and currently rely only on enemas.

I would really appreciate hearing about anyone’s experience, thank you.