Hello,

I made a throwaway account for my child’s privacy.

But I’ve been down a rabbit hole looking at systemic mastocytosis, and want to know what journeys people have been on.

My son is four. In the last 2.5 years he’s been hospitalized 3 times, and to emergency a handful of times. We have asthma/allergy clinic active. Also now ENT and soon to follow GI for suspected eosinophilic esophagitis. He definitely has allergies. He’s allergic to peas and about 20 environmental allergies such as trees, weeds, dogs, cats, etc.

He’s had severe bouts of swelling, rashes, nasal, respiratory symptoms, swallowing issues, bloody noses are constant, and bouts of diarrhea that seem to come on I’m allergy season. We’ve seen lots of specialists in the hospital, and asthma/allergy writes him off as seasonal allergies. However, he just had another flare up of symptoms starting Sunday night after playing outside for a few hours. His symptoms were almost to the point of me wanting to bring him to ER. He was short of breath, runny nose, eyes swollen shut, coughing, rash, stomach pain, broken blood vessels in his eyes, petechiae around his eyes, and hives. I have multiple food allergy kids and by FARE standards for food allergy, he was “anaphylactic”. I gave a double dose of Benadryl and it helped at least calm his breathing within a short while. I stayed on the Benadryl every four hours for several days. His swallowing difficulties have gotten worse with allergies the last few weeks and he had another choking episode last night.

My question is, in regards to controlling symptoms as well as diagnosis and talking to doctors. We’ve tried a wide bunch of antihistamines, at one point he was on 15mg twice a day of Zyrtec which seemed to do nothing. Xyzal seemed ineffective as well. He’s been on Claritin daily for the last year, and allergist just had us increase dose and give twice a day, on top of pataday drops, Flonase, and Benadryl. It’s taken 5 days of all those medicines, for swelling and allergy symptoms to decrease. Which seems unusual, like if I’m having an allergy, I take Benadryl, I’m pretty much resolved after a nap. My son however, it’s like once we are behind a flare up, it keeps compounding on top of itself, if that makes sense, and have to be extremely aggressive to get him out of the scary zone.

He’s traumatized by hospitals and doctors, and I don’t want to put him through more than is necessary, but I feel like his symptoms are far more out of control than normal allergy symptoms. I’ve been reading about EOE and mast cell disorders and how they can go hand in hand. I looked back at his labs for the last 2 years, and his eosinophils are consistently high, every blood test he’s had. Sometimes more mildly and others through the roof. I haven’t been able to find anything about what feels like antihistamine resistance or taking so ling to bring symptoms down also wanted to know your individual experiences that way.

I’m worried sick and just want him to be able to feel better and be a normal little boy, who can play outside and not seem borderline like he’s dying afterwards, any guidance is appreciated.

Thanks so much. ❤️

Hi,

Awful bone pain in tears. Nothing seems to touch it and I’m worried about taking anything to help in case I make it worse. I can’t cope if it’s worse. What can I take or do to help?

Please help I’m desperate. I have to wait until August to be seen by immunology and allergy. Everything I’d usually take for pain I can’t have anymore since these new symptoms (codeine etc) and I can’t even understand if celecoxib is ok to have right now.

Also do people get more mast cell flare ups when ill?

Thanks guys, sorry for the grim introduction to the sub I’m just going through it right now

A year ago I was on Prozac 80mg for OCD and before that Zoloft 150mg. Both times it worked well with OCD which is very severe. I stupidly came off Prozac a year ago due to fear of meds.. now my OCD is nonstop but I tried to go back on Prozac 10mg and couldn’t tolerate it and same with Zoloft 25mg both trials I got VERY SICK. I was booted from the ERP program I was in and they said I can’t come back until I go on meds because my OCD is too severe to do exposures. I recently found out I have mass cell activation syndrome and have likely been in a flare of that for the past couple months. I’m wondering if maybe it’s related to my new intolerance to SSRIs. I wish I could go on TCAS but those have always made me very sick. SSRIs worked well with me in the past and I just want to go back on. I’m seeing doctors and a psychiatrist for this but I was just wondering if anyone has any insight or is struggling with something similar and has any advice. Im hoping once I can stabilize MCAS I can maybe go back on these meds without issues.. does anyone have any experience like that with meds? Where in treating your MCAS you were able to go back on SSRIs?

I have a very painful rash from where my KT tape was on my neck (for cervical stability for my EDS). Even though I used barrier tape, and peeled it off in the shower. I suspect the pollen in the air is making me more full of histamines than usual leading to a more dramatic reaction than usual (usually it’s a little red and sensitive, not so painful). I have access to Claritin d. I don’t usually take allergy meds.

In any of your experiences does taking this lead to the rashes resolving? Any concerning things happen after taking Claritin d? Especially times of day (like night versus day)? Any tips and tricks for resolving these rashes? And/or avoiding them? I would like to tape my neck tomorrow but nervous about it.

The 1st day I took cromolyn (I did not titrate), I noticed an improvement in my breathing. I've since figured out it seems to be that my breathing problems come from histamine/mast cell reaction in my digestive system. Has anyone else noticed this? Seems that I may never have had asthma after all.

Does this mean my specialist was wrong ? And it’s not Mcas?

All this from a damn pizza bite 👍👍 for something so small it hurts like a b*tch

I don't know if anyone else here has MCAS and chronic pain, but I do. My allergist didn't know (and couldn't find) research on ketamine infusions for chronic pain and how it interacts with MCAS. Mastocytosis? Absolutely! But MCAS? No.

She spoke with my pain specialist and between them, it was decided that I start on a "baby" dose of 30 mg ketamine. I've been stable on a regimen of Cromolyn sodium 400 mg 4x/day, Allegra 180 mg in the morning, Prilosec 40 mg 2x/day, Famotidine 40 mg at night, 50 mg Benadryl at night, and 10 mg Xyzal at night. That stability went out the door when my infusion started. Thankfully, I recognized my symptoms and nipped it in the bud.

Buuuutttt..... now I'm lying here with 0 pain relief. I don't respond to opiates (and my allergist has flat out informed me that they'll make me worse). I don't get my next celiac plexus injection until May. My specialist's PA told me that lithium therapy may help.

Is anyone else experiencing this? Or has anyone else experienced this? I'm miserable. And venting.

I think probiotics don’t change the gut microbiome longterm, but they can help or worsen symptoms as long as you take them.

Lactobacillus rhamnosus gg lowers histamine.

Is there another one that does?

Any other things I could take to lower histamine besides antihistamines like Zyrtec? I don’t want to take them.

I tried Quercetin years ago and didn’t feel improvement. I tried a DAO supplement and didn’t feel anything. Rhamonus GG helps.

What should I do?

Has anyone experienced the title, and how was it treated?

Currently taking 300mL Xolair every 4 weeks.

Last weekend was my wedding, and I've had some kind of fungal or bacterial rash on my face for almost 2 years. So, doc prescribed prednisone, minocycline and an antifungal cream.

I stopped taking the prednisone on Sunday. Monday night, I started not to feel ok.

• chest pain
• tingling in arms and legs
• headache
• appetite loss
• high blood pressure (ranging from 130/90 to 148/98)

This is a known, rare side effect. Literature reads: XOLAIR may cause serious side effects, including: Inflammation of your blood vessels. Rarely, this can happen in people with asthma who receive XOLAIR. This usually, but not always, happens in people who also take a steroid medicine by mouth that is being stopped or the dose is being lowered. Tell your healthcare provider right away if you have:

• chest pain
• a feeling of pins and needles or numbness of your arms and legs

Posting to see if anyone else had a similar experience and how it was treated. I do not feel ok, and I am scared.

Ironically, the treatment for blood vessel inflammation (vasculitis) is: prednisone.

I’m 33 been diagnosed ibs and fibromyalgia for over 10+ years. I’ve had straight diarrhea for over 6 years. Lately I’ve been getting a lot of allergies to things I’ve never had issues with before or just from nothing? My white cell count has been off for 10 years and quote “nothing to worry about” I take 3 allergy pills a day to even function normal never mind so much Imodium. Had a colonoscopy and it came back clear. Finally after a three year wait I got in to see a haematology specialist, who now says he thinks I have mast cell activation syndrome? He really thinks he can help my quality of life. But at this point I’ve been let down so many times. Anybody getting a similar experience? I get a lot of headaches as-well. Edit to add: full list of diagnosis so far?

Borderline personality disorder OCD Fibromyalgia IBS Polycystic ovarian syndrome

I am still in the process of getting formally diagnosed so l'm not on sodium cromolyn yet, but I am taking agarcus, perilla, and quercetin which are working really well. I've been taking a break from them on the weekends and noticed lately every weekend I feel like shit, just exhausted cranky and this weird persistent anxious depressed buzzy feeling.

Common sense would say this is probably a link but I'm also going through a lot and pushing myself super hard during the week as a full time caretaker for 2 people so l wanted to see if anyone else found this to correlate.

I have to get a large blood draw for a thing - so much more than just getting like blood draw for standard labs. I usually over-hydrate for things but I didn't think anything about it cause no one warned me and I already drink a lot of water in any given day (and no coffee)...

So my thing has been rescheduled for this Wednesday. I've been told by infusion nurses to drink gatorade the day before my infusion but I don't know what to do with MAs who aren't used to doing blood draws daily. 95% of all phlebotomists don't have issues with finding a vein on me but that's also what they do all day.

I have "tiny veins" and I assume it's because of the MCAS, not really anything else seems to explain it.

Anyone figure out anything that makes this easier? I just spent an hour waiting, getting my elbows poked at heavily by three different women with cold hands while sometimes waiting some more. But it was my fault, cause I'm not hydrated. /eyeroll

Edit to update:

I spent almost 48 hours drinking so much water I sometimes felt sick and made sure to be warm (like it's in the 80s out) in pants and a hoodie. I was cold when they tried before.

They got 30 ml with 1 stick in each elbow. The phlebotomist / office manager took her time and it went better.

I swear I read on mast attack blog that mcas can effect how you bleed.

I was prescribed the oral solution of cromolyn sodium to treat my MCAS. I take it 4x/day: 30 minutes before meals and at bedtime. It's definitely helping to control the oral symptoms I get (burning, numbness, and tingling in my lips, tongue, and upper and lower palate, as well as vocal hoarseness). One weird thing (and kinda good thing) I've noticed is that I sleep hard at night after my bedtime dose, but I'm also groggy after my mealtime doses. I'm glad for the hard sleep at night, don't get me wrong! I need it! I'm an insomniac with chronic pain, so anything that helps me sleep better at night is welcome. It's just the daytime grogginess that puzzles me. There's no warnings that say it may cause drowsiness.

Does anyone else experience this? Or am I just a weirdo who gets weird side effects? 🤔

I finally have an official diagnosis of Mast Cell Activation Syndrome. My current allergist doesn't specialize in mast cell conditions. She recommended I see Dr. Theodore Lee at Peachtree Allergy & Asthma; however, he is no longer seeing MCAS patients. Are there any other doctors in the Metro Atlanta area that specialize in MCAS?

I am new to MCAS treatment. My Nd Has me in an h1 hydroxazine H2 Pepcid And the. Cromolyn 4 ampules per day

She also gave me Ketotifen .25. She said I might not need this one but when I noticed the others helped a little I took some for a few days. Some symptoms are better but the flushing and redness in my face on the ketotifen was much much worse.
Any one experience anything like this?

The redness and burning on my face has been a bad symptom. Another symptom is chronic migraine but with the current regime, without the ketotifen, the migraines are way better! Yay.

I am hoping the face follows suit. My doc said wait about a month.

Any Input? Thanks!

Howdy, all! I’m just looking for some guidance. I recently had a colonoscopy due to some GI issues and I discovered I have an iron deficiency. Thankfully, nothing crazy was found during the colonoscopy, but I did see in the report:

-Mast cell tryptase stain highlights single scattered mast cells in lamina propria (up to 18 per HPF).??

-Mast cell tryptase stain highlights single scattered mast cells in lamina propria (up to 20 per HPF).??

Any thoughts? I’m kind of freaking out.

1. I have been taking 1 mg of ketotifen for MCAS for going on a year. How much are you guys taking?

2. I appreciate the way it reduces some of my symptoms, but I feel SO groggy when I wake up every morning. This isn't consistent, but it's the norm. Does anyone else have this issue?

3. Now if I skip it, I feel like my sleep is much worse than it was prior to using this pharmaceutical. Ie, without ketotifen I can't fall back to sleep if I wake in the middle of the night, or even worse, I can't fall asleep at all. Also my daytime symptoms are so terrible without the ketotifen - but I don't have the same degree as grogginess.

Thanks in advance for your input. I'm wondering if I need a lower dose, which is why I'm curious how much others are taking.

I realize I should discuss this with my provider but I have terrible insurance and can't afford a dr. visit at the moment.

Im on day 24 and its been rough fatigue and a uneasy feeling. I've been doing 1 ampule before bed. I don't notice any improvement in symptoms but trying to stick with it cause i hear it can take a month or more for the body to get used to it.

I can’t get in to see an allergist for another 3 months but I’ve found my life has changed on Quercetin** (spelling wrong in title) and other mast cell stabilising supplements. I notice when I don’t take them for a few days I feel horrible again so I’m wondering if taking them for at least the next 2 months before testing will make the cells undetectable for testing results, or if these supplements work more like a daily band aid for symptoms? I have confirmation on mast cells from my dermatologist but they can’t prescribe Cromolyn or other prescription meds so getting confirmation from an allergist is crucial.

I was diagnosed with Mast Cell Disorder by my neurogastroenterologists as being the cause of my gastroparesis and bowel disorder. I never really looked into it beyond the GI issues so I don’t really have much of a clue in general. Today I suffered a severe allergic reaction (grade 2 anaphylaxis- pic to demonstrate) seemingly out of nowhere with no obvious cause. I had severe swelling of my eyes, face and lips and pain breathing. The Dr who treated me asked if I’d been prescribed an epi-pen. I was just wondering if this type of reaction and/or carrying an epi-pen is “normal” for this condition and is an epi-pen something I should be speaking to my GP about? Thanks.

I was diagnosed with mast cell activation disorder. I'm located in New England. The doctor I'm seeing will not increase my ketotifen to more than 1 mg a day. Everything I'm reading said that the doses need to be higher to feel the full effects. He will also not prescribe cromolyn sodium. Dr. Afrin and his group have a year plus wait list, two year for his assoicate, and the starting cost is $5000 for two appointments. This disorder is really affecting my heart in addition to a host of other things. Any help would be appreciated.

I am miserable and bedridden and I have another month until my appointment with the allergist. I am doing all the things I can (diet, antihistamines, Quercetin, etc) and its helping, but I'm still dreadfully sick. I am also secretly scared that the doctor will not believe me. I just... need some encouragement please 🙏🏻

I recently started medication for this and suddenly I have access to my emotions again. I’ve been crying over sappy or sad stuff, definitely feel a sense of balance and clarity and even my sex drive is back a little. I don’t know if this is because brain fog/survival mode is going away? And I’m only on quercertin and cromolyn. Just wondering if anyone else has had this experience or if I should expect this to increase?

PS I do have a history of mental health stuff but on meds for that for over a decade. Definitely not pregnant.

Seriously. I'm becoming sleep deprived. Again. I haven't had any form of pain management, other than prescribed medications, since 2 January 2024. I've had to put physical therapy for my right shoulder and wrist on hold. I was supposed to start strengthening physical therapy after my last follow up with my orthopaedic surgeon, but that's not happening right now.

I've been to the hospital three (3) times in three months: once in January, February, and just last Friday. It's approximately every three weeks that I have a really bad flare-up of my symptoms where my lips, tongue, upper and lower palate, and/or throat are itchy, burning, and/or numb and I completely lose my voice.

As of last Friday, I'm now on five different medications that specifically target asthma/allergy symptoms: hydroxizine (I may have this spelled wrong, using phonetics), Allegra, Benadryl, montelukast (Singulair), and Xyzal. I'm also on Elavil for chronic pain, but it can be used as an antihistamine as well. I'm still symptomatic despite these medications!!! It's so frustrating.

Has anyone else been in this same boat? At this point, I'm ready to tell my hematologist that I'm prepared to go forward with some form of chemo, even if all of the lab work and the bone marrow biopsy come back cancer-free. These symptoms are just that frustrating, scary, and stressful for me and my husband. I'd rather deal with the harsh side effects of chemo than keep ending up in the hospital every three weeks, where all they can do for me is monitor my vital signs, draw labs, and try to keep me comfortable until they think it's safe to discharge me.

Sorry for venting. I'm just at my wit's end.

I am desperate for help with my breathing problem.

I started deteriorating in 07/2023. I developed breathing problems that I describe as "burning in fire particles of sand causing mucus in the lungs by pollen" and "2nd degree burn from neck to trachea and lung lobes using a cigarette lighter". It is not asthma and I am methacholine-negative. Methacholine does nothing to me. I continue to blow great PFTs.

I also can no longer breathe in spices, stove fumes, ovens, air fryer, bad AQI, perfumes, etc without lung pain.

I had to wear an N95 outside and inside and to SLEEP, strip naked at the door, shower immediately, wash all bedding daily, can never turn on the AC, all my windows need to be taped with plastic, all vents need HEPA filters, vacuum daily, all HEPA filters on max blast, despite all that, I was still in agony.

I also developed nerve/burning skin that is insane with pollen. I will have to wipe it off 20 times a day.

All of these are bettered on H1 and montelukast. I am already on 300mg Xolair for presumptive MCAS. But the breathing and skin problems persist.

I also have developed red papules that aren't UP or hives. They are covered by H1/Xolair.

By 11/2023 I became anaphylactic to all food and water. Xolair and cromolyn is helping with this. My breathing pain got even worse after this.

I am tryptase normal and I assume my 24-urines will be normal too.

It's March and pollen is coming next week. I had a hard time sleeping from the pain yesterday. I can feel it come through windows even if they're closed and I lived with 5 HEPA filters last year, taped all of my windows with plastic. I can't live another year like this. It's 6.5 months until winter for me. ICS+LABA+LAMA only keeps the pain at bay at extremely high ICS.

Do any of you with MCAS have BURNING with breathing in?? What can I do for this? I've visited multiple hospitals and I don't know what to do.

I am diagnosed with POTS, caused by the MCAS. Waiting to see if there's SFN involvement, but it's a long wait.

https://youtu.be/yayENrC2AMU?si=Sqqn2CcnWcmAAPqk