Just received a dreaded letter that Dr Lictenberger- MCAS specialists in NC is closing his office😩 I don’t even know how to process this as no one else around takes MCAS patients with insurance- and even cash pay like dr Spiritos is a years long wait😞 sigh

What is OTC Cromolyn sodium nasal spray?

Does it coat the mast cells inside your nasal lining and prevents them from opening ("degranulating") and dumping histamine, leukotrienes, and inflammatory chemicals in the first place?

Is it effective at treating allergy symptoms?

Is it typically well tolerated?

Does it cause brief stinging, sneezing, or nasal irritation right after application?

How often is it recommended to use each day?

Is Cromolyn sodium a very safe option?

Is Cromolyn sodium safer than nasal steroids or antihistamines?

Since mid-August, I've had super sensitive and been very reactive to certain chemicals and fabrics. I never know which. Some places I don't even sit down. I'll get a reaction from the chair. Full body tingle, itch, burn and throat constriction. I've had to resort to hand washing my clothes, which sucks. This was a very minor issue before then. I can track it back to starting Ketotifen or I just got worse at the same time. I stopped the Ketotifen last month and still feel awful. If not worse. I've had to discard so many clothes! With winter upon us, idk what I'm going to do for blankets. I can exactly hand wash those. I love to bundle up in a fuzzy blanket.

Does anyone else have a skin and/or chemical issue? I genuinely have no idea of what it SPECIFICALLY might be. Which means I don't know when it may occur. My son and I were in Walmart and I handled a few sauce pans. A few minutes later, my palms burned and throat started closing I clawed out my epi-pen and gulped down a Benadryl. The Benadryl minimally helped and washing my hands helped. I live in almost constant fear right now. I can't even say that I'm safe inside. I had to leave my place because of mold and staying with others. My mother acts as if I spat on her when I declined a pillow and have my own sheets.

I'm just tired, anxious and sad. My quality of life is decreasing. It's bad enough that food isn't enjoyable. I eat my few bland foods just to stay alive.

Any input, y'all?

Hey all! I’m just wondering if anyone has experienced malignancies as a side effect of Xolair?

I’ve been on Xolair for roughly 1.5 years and only had sore joints and stomach pain when I first started. Now I’ve been getting clusters of bumps that were not visible practically everywhere. At first you could only feel them but now some bumps are visible. I’m panicking a little here as we still haven’t figured out exactly what these bumps are or why I’m experiencing this all of a sudden. I’ve had ultrasounds and zero mentions of them in the report. sigh

Hi!

I have very severe long COVID and started having MCAS-like symptoms (generally facial swelling and flushing, wired state).

Weirdly enough, all antihistamines (Desloratadine, Fexofenadine, etc.) kinda intensify my symptoms and ultimately cause itchy skin, worse angioedema, mental overstimulation, etc. It seems like my immune cells are so unstable that interfering with them cause a rebound reaction if that makes sense?

What should I do? Increase the dosage of antihistamines? Increase the number of times I take them during the day? Add Presnisone?

Has anyone any experience of an antihistamine that worked for them when others caused anxiety? I’m wondering which to try next after cetirizine. Anxiety was debilitating with that. Nervous system is extremely sensitive right now and not sure if I’m just wasting my time trying others. Suffering with histamine intolerance right now but am yet to find a supplement I don’t react badly to.

This seems quite weird to me but then this condition is always surprising me.

Been in a flare for about a week. Very confused as really thought I’d avoided all my normal triggers. Really bad throat and chest tightness this time which I don’t always experience but I eventually worked on a theory I might have a tonsil stone. Literally within an hour of getting rid of it everything calmed down to an acceptable level.

I’m not sure how that works but I guess my immune system wasn’t happy with the tonsil irritation. Anyone else ever experienced this??

Two weeks ago I went to fast n did 1.5-2.5 mg on n off and got hit with the most intense brain fog/flat feeling everything was making my heart race super fast n adrenaline dumps. I stopped for 3 days n started on .25 mg for three days then .50 for 3 days and now doing .50 at night and .25 in the morning and my sleep is messed up. I need this pill tho because I’m sensitive to oxalates and dumping oxalates as we speak n I get histamine flares when they mobilize. But it’s helping n I’m noticing I’m a person who needs it because after 8 hours the effects die down. How long does it take to get out the funk of the insomnia and full stabilization effect ? It’s the only thing I take because I don’t do good with h2 n h1 I feel like they contribute to my insomnia

i swear i saw a paper from dr afrin recommending dosages this high and so far i'm at 4mg a day and it's helping but not enough, it'd be helpful to have a source to bring to my doctor

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I had been waiting for an appointment with an allergist for months. In the end, I went there and the doctor simply told me that it was too complicated for him, but decided to prescribe Flutiform while I look for another doctor. The colder weather had been making it difficult for me to breathe, and I kept coughing throughout the appointment.

I was happy that, for the first time in my life, I had finally received treatment for my suspected asthma.

But of course, nothing ever comes easily to me. After the first use, I felt tightness in my throat and a burning sensation, but I tried to convince myself that it was a normal reaction to corticosteroids. The second and third times were more or less fine, but the fourth time, two hours ago, was awful. It looked like a typical flare-up of what might be anaphylaxis. I don't know. Of course, I looked perfectly fine on the outside. I can't even call an ambulance because they don't help me, and I've reached the point where I don't trust my own judgment anymore.

Now I'm once again left without medication or doctors. It's gotten cold, and I'm struggling to breathe. I'm in a terrible state right now, and I'm so tired of everything. This is never going to end.

so my gp made a referral to allergy after i went to the ER with an 'anaphylactoid'/allergic reaction (it didnt get to throat fully closing so i was fobbed off) a few months back and the allergy clinic has now written back to me essentially saying that mcas isnt real and that even if it was, they wouldnt treat it but that they are "happy to explore if" i have allergic rhinitis bc i get severe sinus symptoms in a reaction/flare

i genuinely dont know what the fuck to do. i cant even get an epi pen from my gp bc i have to get seen by allergy or whoever the fuck first and they have to decide if i even get to fucking have one-- clearly they dont think i should get any care or further investigation and they didnt say i should be referred elsewhere. they said nothing about the skin patch test the E.R. doctor recommended i receive when i pushed to get any kind of testing done (bc the E.R. didnt do fucking anything as i was waiting for 12 hours)

im so sick of everything. im only on anithistamines, and some OTC meds (sodium crom eye drops) and whilst they help a little, i still have a shit ton of other symptoms they dont even help alleviate bc those are likely not caused by histamine :/

i cant afford to go private, so really have no fucking clue what to do next. im just so so so tired, esp as i dont have a support network either, like i cant go out and meet people bc i dont want to feel fucking suicidal all the time from being constantly flared up and having reactions, so how the hell can i even meet people regularly enough to form bonds like that? this condition is a catch-22 and im genuinely just considering giving up cus this is really no way to fucking live

Hi everyone, I get reactions that lead to my tongue and throat swelling, the feeling of impending doom, faintness and low blood pressure.
The sensation does not feel like anxiety.

I have been to resuscitation a few times for this and they haven’t needed to use Epi pens whilst I am there, as my antihistamines have kicked in by the time I get to hospital. In resuscitation they give me high doses of antihistamines, steroids and an IV drip which work.

Is this anaphylaxis or is this considered an mast cell reaction?

As soon as I can feel my tongue and throat beginning to swell I take my anti histamines immediately (I have been authorised to take 4x the standard dose), I get the other symptoms quite quickly after the swelling such as low blood pressure, impending doom and dizziness. I seem to be able to wait it out for 30 mins to an hour and it becomes more stable & the impending doom feeling fades. A mildly swollen tongue can last for about 5 days until it returns to normal when I finish a course of prednisone and antihistamines.

This has happened many many times now. However I explain the tongue swelling to my doctor and they say as soon as I feel the swelling begin I should be using my epi pen.

It would be useful to get your thoughts on this. As what I do does seem to be working but it is going against what my doctor says. I am also worried about using the epi pen.

So I started getting really bad itching with and without hives starting in April of this year. I was taking benedryl and switched to allegra. At first i would take it for a couple days t then try to go without it but i never got past a day before it got bad again. It doesnt take the symptoms away completely but makes it better. I also started having some fatigue and congestion along with headaches, vertigo, tennitis, occasional diarrhea and generally feeling like i had the flu. My dr sent me to GI because i had cholestasis during pregnancy so they wanted to rule that out. My mrcp was normal and my bile acids were slightly elevated but all my other labs were normal. They then sent me to an allergist who told me I had csu started me on singulair and increased my allegra to 2x a day and then sent me for blood work. He did a cbc and an allergy panel. My cbc was normal, my rbc, hgb, hct, wbc were all borderline on the high side but still normal. My ige was 109 and my allergy panel was all normal but now he wants to start me on xolair. Anyways my symptoms have gotten progressively worse and I feel ill more than i feel okay, and it gets so much worse around the start of my cycle and mid cycle. From what i have researched its most likely mcas imstead of just csu which only affects the skin but i feel like the treatment would probably be the same. I just want to know if there is light at the end of the tunnel and how much will Xolair actually help

My story with gastritis /LPR / histamine issues can anyone relate? Could my nervous system be the culprit? Could the lining of small intestine heal this be a solution?

Past 4 years I got the gastritis symptoms and Laryngael reflux (LPR) past 5 years and histamine issues

My histamine issues are nasal congestion when eating fermented foods for example or high histamine foods. Also sleep issues

But I remember years previously I felt super stressed and unhappy with my life. For some reason my sleep has gotten bad. I would always wake up 3 hours in sleep and I did notice I would fall asleep and still end up with 7 hours slept. But I noticed the sleep was getting worse I would wake up 2-3 hours in sleep and then unable to fall asleep again

I was also dealing with injuries that prevented me sleeping. For example I had a wrist injury that was causing pain during sleep. So I think I developed anxiety and poor sleep from stress/injuries

This eventually lead to something happening to me. When I ate really spicy food, I ended up getting dizzy and vertigo symptoms during the meal. I was having extreme panic attacks and worried about my health next few months because I had no idea why that happened

I even had a very weird hyperacusis moments (extreme sensitivity to sound), my nervous system was fully shot. Hearing things like a fork on a plate gave me extreme panic because it seemed loud.

That eventually led to the gastritis/reflux diagnosis and I have been struggling ever since

In the early years of gastritis/LPR I have tested for h pylori through stool and blood test they both came out negative. I still wonder if my stool was false negative because I did have Diarhea twice when I took it

At my worst in 2023 I lost 20 pounds. I could barely put food down my stomach was very irritated. I did some moments of Pepcid and PPI and it didn’t help much. I relied on alot of natural supplements like DGL.

What made me gain weight and heal: Nervous system regulation

For some reason when I went on vacation in 2024, my mind switched. I became happier, less anxious, less worrying about symptoms. I was eating airplane food while happy and I did end up getting super gassy after the flight but still I felt good in general

First week of vacation was miserable I’m assuming the stress made my throat symptoms and stomach symptoms worse. 2-3 weeks in the vacation, I even noticed my LPR throat symptoms vanished completely. My voice returned, I sounded normal and not strained. Also I was living in an Airbnb no carpet apartment so I wonder if that was helping my allergies and what not

4 week vacation I noticed I gained 12-13 healthy pounds back. I was eating normal food there I wasn’t eating super healthy. I think I was just happier in my life and my digestion was finally working and maybe the stomach lining was healing?

Anyways back to 2025 I came back home and I noticed my symptoms were coming back like the voice hoarseness from silent reflux, the indigestion, ect. For some reason at my home I feel unhappy because people around me are always arguing. I remember moments in the past where I would leave the house completely after hearing them argue. Is this a sign my nervous system is not tolerating the environment?

2026 I took a PPI for 2 months 40 mg to help heal my “voice”. I went to the voice specialized ENT and he said he doesn’t see any signs of reflux. Even though I still had the strained voice and voice pain. He said my vocal cords looked healthy. After he told me that my voice pain instantly went away. Is this another nervous system sensitivity ? He seems to think it’s functional like muscle tension dysphonia because I sound fine in one language and strained in another. But overall I have felt much better with my weight back and I was sleeping fine I wasn’t getting throat symptoms in bed anymore or stomach sensations, I felt healed

I officially tapered off PPI and had no issues with the taper. I got back to my original weight before all the symptoms and distress happened. I was feeling fine in general less stomach symptoms and throat symptoms at night time.

Then something happened

Something loud irritated my ear. I think it’s called acoustic trauma shock. Basically a loud noise triggered my nervous system and ear to be hypersensitive to sounds.

I felt super panic and kept constantly searching up my symptoms and if I did ear damage and what not. Loud noise again affected me and made me tense up badly and feel stressed

I took a supplement called NAC because I thought it would be safe to take to prevent “inner ear damage”. I also ate spicy food during that time and now my symptoms have returned with a vengeance

The dizzy spells, the poor sleep, the anxiety doom wake up after sleeping few hours, the burning in stomach on empty stomach, the bloating. I am now getting bad constipation as well 😞 I am getting that throat feeling again the nonacidic reflux it feels like I have to swallow a liquid feeling in throat that irritates my voice

I’m gonna go to the gastro again soon but I’m hoping any of you have experience or atleast hope I can finally heal based off my experience/environment?

I’m again back to being anxious and looking up my symptoms worrying about the worst health that can happen to me

Also to add:

I have severe dust mite allergy
Mold allergy (cladosporum)

My shower filled with black mold from hot steam and poor circulation I’m not sure it’s cladosporum in there but it might be

I get congested after showering sometimes

Live in carpet that’s 20 years old

So I wonder if these two are aggravating and causing me to have poor sleep and it’s not only reflux/gastritis related

Pepcid at night empty stomach kinda makes me more anxious I’m clueless on how to heal. Even the Pepcid makes my reflux worse at night because my lower tummy is constantly bloated and I think it causes gaseous reflux to come up from the bloating

I seem to have slow motility in digestion /constipation

My lower tummy is constantly bloated at night which seems to lead to gaseous reflux

Also maybe critical thing to add: I was given antibiotics when I was younger 15-16 for acne. They put me on them for so long. Ever since then I developed rosacea in face.

My voice is getting worse every year

ENT recently scoped me and said no vocal cord damage which made my voice pain go away immediately but I still sound HORRIBLE. Like a 100 year old smoker

All started 4-5 years ago

Sometimes there’s moments where I sound fine but I mostly sound strained and tight. The moments I sound fine are first thing in morning and at night when I’m relaxing about to fall asleep.

Also randomly but I noticed recently when I read my friends text I laughed about it internally and I felt a choking sensation in my throat. Why are my muscles so tense?

Should I move out of my home asap?

Sorry for the rant but I’m tired and fed up living depressed daily

Has anyone in this sub reddit taken Barzolivumab for MCAS? Has it helped and how?

Please also would really appreciate if you can share your Mcas protocol. What other medications do you take that really helped with Mcas? And today also then help your joints not sublux as much.

Title says the main point but feel free to read on…

I don’t understand where to go. So let me hear about you please… how did it start, what are your symptoms, and how are you managing or doing treatment.

Hi, I’m new to this idea after continuing to get worse and worse this year I decided maybe my allergies are the problem. My GP was dismissive and prescribed a beta blocker for heart thumping today but I’m not interested really.

Got tested for tryptase, came back high twice but not super high. Like 13. I’m getting red bumps for years usually with heat but it’s getting easier and easier for them to come up. I’m also dealing with orthostatic intolerance and some post exertion malaise symptoms. Right now I’m getting tingling in various parts of my body like my face and legs.

I’m freaked out.

I’m levoctrizine 5mg twice a day. Just bought some pepcide bc why not try it! Order nac and quercitin.

I know I should be grateful that someone is willing to test me, but goddammit, I'm so uncomfortable right now: occipital neuralgia, ear burning, mouth on fire. It's only day 1.

My immunologist doesn't think I have MCAS because my primary symptoms are nerve-related.

So I've been hooking up with my friend at uni and it's really casual, and he has another person that I also know he hooks up with. We're all fine with this arrangement, and no one wants anything serious. But the other girl just told him she has mono. He's not symptomatic, but symptoms can take 4-6 weeks to develop, and the last time they hooked up was a couple weeks ago. He and I saw each other just a few days ago, so if he was exposed he could have transmitted it to me. I had to take last semester off because of how sick I was, and that was from Covid. I'm so careful and wear a mask to all of my classes and when I go out in public, but I thought I could have one private part of my life where I could pretend to not be sick and be without a mask. Mono is supposedly horrible for a healthy person, and I'm terrified about what it could do to me. I don't want to have to leave school again, and what's worse is that I won't know if I have it for weeks. I'm so scared, and I don't know what to do.

Does it help just calm you down anybody?

Hey guys. So I've been diagnosed with MCAS for a few years now, but the way it presented was pretty unusual. I have a high baseline tryptase level, but I tested negative for HaTs and the KIT gene blood test was negative too. My last two tryptase levels were 17 and 15, so it's not really high enough for SM. I've been on a combo of Zyrtec, famotidine, carbinoxamine, cromolyn sodium, steroid nasal sprays and rinses, and twice monthly Xolair for years, but I'm starting to have severe refractory symptoms again. My doctor mentioned doing a bone marrow biopsy if my tryptase ever goes above 20, but at this point we're running out of things to try besides oral steroids or an immune suppressant, which I can't do since I have a separate immunodeficiency disorder.

Has anyone else gone through something like this with their mast cell disorder? Did you find answers or a treatment that worked for you? I appreciate any advice y'all might have. 🙌