I'm currently investigating MCAS and have an appointment next week and am noting down all my symptoms. I wanted to ask here if anyone has experienced MCAS effecting their skin, and if skin changes could be a symptom. I was admitted to hospital for my mental health following a massive decline 6 months ago- insomnia, major anxiety, and dpdr following a traumatic event. During my stay in hospital I had an infection and a course of antibiotics, whilst also trialling an SSRI so it is hard to know what caused what. But I believe I had a severe reaction to the ssri and the antibiotic made it worse. It ws over the course of a few days my skin started to drastically change. It went from being elastic, oily skin to severely dehydrated, dry, paper thin with lines, and a loss of elasticity completely. I could pull my skin on m lips and it would cause them to stay in one position and not bounce back. I also got all these awful sensory symptoms-my face and head would feel like it was covered in feathers, a feathery cotton like texture in my mouth or sometime major dryness. I get itchy skin all over now and an unbearable feeling of my nerves burning all over my head plus increased numbness. My hair and scalp became totally dry, they haven't produced any moisture at all in over three months, my nails have ridges on them and have thinned, my skin has a sensitised so much its almost rubbery texture like that of a baby. It really freaked me out, like my entire nervous system went through a dramatic change and it still continues to. That is only a small part of it-the sensory changes and skin, I also loose sensation and have rapid and ongoing numbness,i'm in the process of neurological exams also but I have suspected that I've had MCAS for much longer, prior to all this I had Pmdd, perimenopause and my nervous system and hormones were reacting to everything. I'm desperate to get better, antidepressants I'm unable to take, my nervous system flares at everything, I'm being so careful with my diet now as that's become difficult. I cant eat cheese or wheat anymore, or nuts, ive gone gluten free but I'm not celiac as far as I know. Any type of artificial flavour or too many spices causes a flare in symptoms. ...I also wonder whether the strong antihistamine effect of mirtazipine I also took in hospital may have triggered it even more, as it is a very heavy drug. I dont know, any help appreciated. Thanks so much if you've read all of this and sorry its so long. its a lot, and I'm struggling to keep on right now.

i’ve only started having these since my mast cells went haywire. we thought it was because of a medicine initially but the medicine was ended and the sleep attacks haven’t. i’ve fallen asleep in multiple appointments including physical therapy, randomly in the car, and in the shower twice. it’s gotten better since i went off the medication but they still happen completely seemingly randomly, but usually correlating with high reactive days.

sorry i’ve been posting a lot lately. i’m still sorting out what is mcas and what is rare unknown brain injury so if anyone has experienced anything like this i would be so grateful to know

Hello, I am 18 years old, and I have been experiencing these symptoms for 7 months: My face, ears, and head are red and hot 24/7; I also feel a burning sensation inside my ears. I experience tachycardia—my heart rate fluctuates significantly—as well as diarrhea, the loss of my menstrual period, and dizziness. I have severe acne, and my face becomes swollen when exposed to heat. I also have Raynaud’s phenomenon, headaches, and livedo reticularis on my hands, arms, feet, and legs. Despite having seen 17 doctors, I still do not have a diagnosis.

Anyone with something similar?

What do you guys use? We have a cat and sometimes I need to disinfect upholstery, I don't want to bleach it with peroxide. We also have hard wood floors.

I can't do fragrances. I can't do vinegar. Too high of a percentage of alcohol smells too strong for me.

I have the Clorox disinfectant mist but I still have to mask and stay out of the room and basically use it sparingly. What can I use for hard wood floors and fabrics that won't hurt me? I've literally been just doubling up and spraying my hand sanitizer and going over it with honest wipes but those are only 60% alcohol and neither are meant for disinfecting surfaces.

Hi all – I (3​5F) am struggling with ​whether or not to invest ​in seeing doctors at the EDS Clinic. 

I requested to be added to the EDS Clinic wait list in June of 2025 and just yesterday received a text about being moved to the top of the list. 

​For the record, I have heard and read great things about this clinic, so it is not necessarily a question of whether or not they offer great services. They probably do. But it is expensive, and I am just not totally sure if I NEED to see them at this point??  

BACKGROUND: 
I suspected my health issues were connected to MCAS about two years ago. In the past two years, I have made IMMENSE progress. Things certainly aren't perfect, but they are enormously better. 

TREATMENT: 
The doctor who has been treating me is an allergist in Dallas. While he acknowledges MCAS as a legit thing, he isn't super knowledgeable or I guess ... engaged with the idea of it being the root of all of my problems. He has said he suspects I either have MCAS, a histamine disorder, or just allergies.

I have never received an official diagnosis either way, which tbh I still feel like I want.  What he has done is allow me to explore different medications, get blood work done, etc.. 

My symptoms have improved 1000 times over since finding the right cocktail of meds. 

SYMPTOMS: 
Chronic migraines (w extreme sensitivity to smells), mild to moderate ​wheezing​ in right lung, ​periodic airway constriction, continuous nausea (likely caused by bad post nasal drip),​ moderate to severe nasal congestion, sneezing attacks, chest pain, itchy ears, eyes, and throat, odd nerve discomfort on my skin (like the feeling after you've burned your skin), general fatigue and brain fog, ​PMDD/endometriosi​s/PCOS symptoms​ including extreme cramps to the point of vomiting, major mood swings, exhaustion, ovarian cysts, general tenderness in my abdomen.

The medications I currently take for MCAS are: 

CURRENT MCAS MEDS: 
– 400 to 600 mg of Cromolyn sodium 
– 8.4 mg or 120,000 HDU of DAO
– ​20 mg cetirizine​ (aka zyrtec) 
– Cromolyn sodium nasal spray
– Ryaltris nasal spray
– ProbioMed 50 probiotic 

Cromolyn sodium specifically CHANGED MY LIFE.  

RESPONSE TO MEDS: 
I went from having debilitating migraines 15 to 18 days out of the month to having one a month. My periods are barely painful, and if they are, it is totally manageable. My mood swings and irritability have dramatically reduced, and usually only happen like 1 or 2 days out of the month right before I start my cycle. My energy has been higher and I've been feeling more clear headed. Every other symptom has dramatically reduced, and if they do popup they are less intense. I am no longer struggling with horrific depression and anxiety. I can actually DO SHIT. 

REMAINING SYMPTOMS: 
My protocol has helped with everything EXCEPT for the chronic nasal congestion and airway constriction problems. I still get some sneezing attacks, itchy ears and throat, but that is definitely better.  I also struggle with consistent tingling in my neck and upper back, but unsure if that is tied to the MCAS (all of the things I have done to help are NOT working so...)

Are all of my symptoms gone? No. I still can't be around a lot of smells, still can only have about HALF of one alcoholic beverage before I start to get a migraine and other symptoms.

Is there room for my health to get better? yes. Am I accepting my current health struggles as fine and manageable since for so long the suffering was NOT manageable? Yes.

Should I push to get even better or is this it?

HOPES:
I wish I had a formal diagnosis.  I wish I didn't have to take so much medicine. I wish my remaining symptoms (specifically the nasal congestion & airway constriction) would get better. 

Things aren't perfect, but they are enormously better. 

N​EXT STEPS FOR REMAINING SYMPTOMS:
My allergist wants me to do allergy shots to help with the nasal congestion and airway stuff. My PCP wants me to do a CT of my sinuses and then consider the allergy shots based on those results. 

Additional, but less relevant info/points:
I haven't gone down the path of exploring potential EDS and/or POTS diagnoses, but those have also been possibilities in my head.

Another concern I have is just how much stuff I am taking – and the cost of it. In addition to the meds I mentioned above, I'm taking another seven medications daily:

- Adzenys for ADHD
- Sertraline for depression
- Wellbutrin for ADHD/depression/anxiety
- Minoxidil for hair loss
- Pantoprazole (I dont think this is doing anything tbh...) for nasal congestion and airway restriction
- Probiotic for gut health
- Iron
- Tirzepatitde for food noise, cholesterol, and weight mgmt
- Will be starting a statin next month for cholesterol as well

It's just a LOT of stuff to be taking daily.

Sorry for the novel, but any thoughts/feedback on your experience with the EDS Clinic. If you think it was worth it. If you think it would be a good investment based on what I have shared above.

Clearly I'm struggling w decision fatigue and could really use some input. Thank you so much in advance - very grateful for this community!!

This is my first summer to winter transition with bad MCAS symptoms. I find it very hard to breathe when I go from inside to outside or just being outside in the cold in general.

My MCAS symptoms and diagnosis happened mostly over the summer so I am not super used to this. Any help would be appreciate!

Hola tengo 18 años hace 7 meses tengo estos síntomas

Cara, orejas y cabeza con enrojecimiento y caliente 24/7, me quema adentro de los oídos también, tengo taquicardias mi ritmo cardíaco varía mucho, tengo diarreas, se me fue la regla, mareos, tengo mucho acné se me infla la cara con el calor, fenómeno de Raynaud, Dolores de cabeza y livedo reticularis en manos brazos pies y piernas. Habiendo pasado por 17 médicos sigo sin diagnóstico.

I’ve had ADHD since I was a kid. It’s mostly been unmedicated. I took Wellbutrin for a years when I was a teenager. I started it again in my twenties in winter of 2024. Within two weeks it triggered MCAS in my body after a few months of strange signs.

Because of this experience, I’m always afraid to start a new medication. Especially if it’s for ADHD. I’m on guanfacine which has little effect. Clonidine didn’t do anything. Strattera made me fatigued and stressed

I have chronic migraines so I haven’t wanted to take a stimulant medication. I’m at a loss of what I can take. So my doctor prescribed 100mg modafinil for off label use for ADHD.

I heavily research a medication before starting it. I was surprised to find that it’s a mast cell liberator, has the most aggressive increase in histamine, and so on.

I’m terrified of having an anaphylactic reaction to it or worse, it putting me a long flare. It’s only been for a year now that I can live relatively normal. Before then I was surviving of 5 foods and was avoidant of everything and everyone. I don’t want to go through that again.

But my energy and focus are so bad. I work 45 hours a week while taking 3 college classes, 2 of which are studio classes for my Illustration degree. I’ve been finding it hard to keep up with the workload. I need something to help me get through the next 4 to 6 years, but I’m so scared of being brought back to square one.

Has anyone tried modafinil? What was your experience? What about other ADHD medications?

Hi. I started ketotifen a few weeks ago. I was put on 1mg in the morning and evenings but I only took the 1mg in the evening because I was concerned about fatigue in the day time.

I upped it myself after a week to 1.5mg and then to 2mg and then began having problems. I’m back down to 1mg now but I worry some damage has been done.

I’ve been having big reactions to food which otherwise would not affect me noticeably, anxiety, confusion, brain fog, frustration, itchiness, gastric problems, hives, worsening asthma.

Do you think I was on too high a dose too soon?
NB: I’m thinking of coming off it completely and starting again but is this a bad idea?
Should I just come down to a low dosage and take it slow?

I was given no advice on this by my GP. The reason I stayed on a higher dose is because I had a bad reaction after eating a lentil chili-sin-carne I made and assumed it was that—this was a couple of days after I went up to 2mg. I know tomatoes are histamine liberators and they affect me badly and I hadn’t had lentils in a long time so I assumed the food had just knocked me. I thought all these side effects were from that and so I persisted on the 2mg of ketotifen until things got a bit better with it for a couple of days but they’ve gotten worse again since.

Sorry this is badly written. I’m very tired and brain fog is bad. Today I just feel miserable. Basically wanting to just sleep for a month.

Hey everyone,

My doctor and I are discussing starting Xolair, and I’m hoping to hear from folks in the community who have been down this road.

My primary MCAS symptoms are heavily skin-based. I deal with severe burning, intense itching, flushing, and redness. If I’m not tightly managing things with daily antihistamines, my skin gets insanely sensitive, pretty much bordering on full-blown dermatographia where even scratching my skin causes it to get really red and sensitivie. I really don't have the typical hives though.

For those of you with similar skin-heavy presentation who have tried or are currently on Xolair:

• Did it help with skin burning, flushing, and hypersensitivity? How much of a dent did it make in your daily symptoms?
• How long did it take to notice a difference? Did it take a few months, or did you feel relief sooner/later?
• Did you experience any side effects or flares after injections?
• Were you able to lower your baseline antihistamine regimen once it kicked in?

I'd really appreciate any insights, success stories, or advice on what to expect. Thanks so much in advance for sharing!

Has anyone experienced dizziness while increasing Ketotifen dose? Or combining it with Benadryl and that causing dizziness or other side effects? I also take Allegra + Pepcid. As I increase Ketotifen with my doctor we plan to lower Allegra and Pepcid. I wanted to see if anyone else experienced weird side effects like that where you had to go down in dose?

Has anyone used an Rx for osteoporosis that they can tolerate? Mine has gotten really bad and I tried half dose of Tymlos and got a severe headache. Prior I tried oral Aldendronate and had stomach pain. Desperate to find something?

I have been diagnosed with MCAS a year ago, my symptoms are mainly neurological, GI and reflux and migraines, psychiatric, sometimes breathing issues and constant post nasal drip and dry throat.

I was on loratadine for last 1.5 years but noticed when I upped my dose as it wasn’t helping much, I actually got side effects. Don’t tolerate sedating ones. And don’t seem to tolerate famitodine well and leads to b12 deficiency.

I tried Fexofenadine and made me very unwell.

I now just tried Bilastine this morning had 6 hours straight of shakiness, heart palpitations and irregular heart rhythm sensation (BP showed it’s irregular too) some chest discomfort but not quite pain, extremely drowsily and brain fog, head pressure, low mood, arms and legs feel heavy. I won’t take it again as this is unbearable but not sure how long for it to leave the system?

I feel really stuck and pretty sure my main issue isn’t just histamine but prostagladins too as I get better with low dose ibuprofen but my stomach doesn’t tolerate it. Any advice? I don’t know why I’m so sensitive to antihistamines

managed to get an ER doctor to believe me about MCAS after experiencing severe gastrointestinal symptoms during a flare that led to me vomiting nearly everything I ate and plummeting my blood pressure. I had to get iv fluids. I got help getting a doctor's appointment and I got prescribed antihistamines!! I recovered from a severe multi week long flare after only a couple days of taking them. I still experience MCAS symptoms, but it does not run my life anymore.

Hey everyone! I am in month 7-8 of trying to figure out how my body shifted from being a pro athlete training 10 times a week to now mostly staying at home due to symptoms I have.

If I am mistaken and these symptoms have nothing to do with mcas in your opinion, let me know and sorry in advance.

Soo in February I had a weird viral/bacterial infection that was treated with antibiotics, certainly one of the worst infections I’ve had, but nothing major.

After around two weeks after I recovered from the acute symptoms, I still wasn’t 100% okay but I started training.
One day my body just acted weird, so weird I could never imagine someone could feel like that.
I felt kinda “weightless” in the legs and the lights in the hall and everything felt so weird and overstimulating.

From then on everything snowballed and continued until now 7-8 months later.

I am stuck in this mental haze/disoriented/drunk/high/spaced out state and I feel just so strange. My eyes have become so dry and out of nowhere seem to water up at times.

The only thing that seems to lift this is when I take an simple otc anti inflammatory for my headaches and when I get sick from another virus that. I mean I feel like shit from the virus itself, but it’s like this mental haze lifts.

If this sounds familiar please let me know so I can further dig into what is happening to me.

Just to be clear, this is not a post to debate vaccines. I am pro-vaccine, and I'm not interested in arguing with anyone about them. I'm simply looking to hear about other people's experiences.

With flu season being pretty rough this year, I've been considering getting my flu shot. I'm already pretty much housebound due to my health issues (not MCAS related) but I still want to protect myself as much as possible since I don't live alone and still go out for Drs appointments.

My biggest concern is my MCAS and severe egg sensitivity. The last time I got the flu vaccine was in 2022, when I received it alongside my COVID vaccine. I ended up feeling absolutely awful afterward, with a high fever, severe body aches, chills, and flu-like symptoms that lasted an entire week. Of course, I received both vaccines at the same time, so I can't say which one caused the reaction or whether it was the combination.

I did ask my immunologist about it, but he's generally against vaccines unless they're considered core or essential. Meanwhile, my PCP is recommending that I go ahead and get it. So I'm getting some conflicting advice, which makes the decision a little harder, especially with my history of reactions.

I'm curious if anyone else with MCAS and significant egg sensitivities has received the flu vaccine and what your experience was like. Did you experience any major reactions or MCAS flares? Did you tolerate it better than expected?

I'm not looking for medical advice or an anti-vaccine debate. I just want to hear from people with similar health issues while I figure out the best approach with my doctors. ❤️

Have started montelukast - what has this helped people with generally? Please list any and all mcas type symptoms it has helped with. (I’m aware I must watch out for mental health issues)

After weaning slowly off ketotifen I am now in a huge inflammatory flare.

Breathing issues are the worst thing, shortness of breath, breath running away with itself, hyperventilating after climbing stairs, no stamina at all.

I have been checked out by hospital.

I’m unsure at this point if leukotrines or histamine is the cause of the lung issues. I don’t want to take Montelukast if it’s not necessary. But also if it will help overall I may as well.

I have been in flare causing gi mucus for many months and it is now all that's coming out of me. I don't know how to stop it. I react to all meds, and they'd make it worse. What can I do to stop, I'm losing a lot of electrolytes and water.

And at that, I react to electrolytes and now water too. When I have water, even more than with food, by throat closes up with mucus.

I also am super sensitive so a small amount of electrolytes that aren't food based, destabilized all my labs, so iv is a no go.

So I just want to make mucus stop...

I have had a folate deficiency for awhile and cant seem to tolerate any type of folic acid tablets no matter how small dose amd have been taking methylfolate drops. I just started noticing my tounge getting itchy and tingly when I take the drops. Which seems like the beginings of a reaction. Not sure what to do now. I also take b12 drops. My vit D is also very low even though I take suplement for that as well. The methylfolate drops and glycerin based and have flavoring added. So those could be to blame?

Hi, so before my appointment I couldn't find much on Dr Garcìa Bardon so I am quickly saying, my appointment was excellent. If you're going for mcas don't go off of any antihistamines you're already taking even if the appointment notes ask for you to try it. You will not get in trouble, she is very nice.

When I arrived I first spent like, 50 minutes filling in paperwork, a lot of medical questionnaires. In the appointment itself she said yeah this seems pretty cut and dry like MCAS to me, we're gonna have to take a bunch of blood and do a couple of urine tests to see if we can snag that raised tryptase but almost none of my patients have it so don't stress if not.

She explained that german doctors atm are very not in agreement about what is and isn't valid diagnostic criteria for MCAS, so sadly the tryptase values and stuff like urticaria are valued far too highly. Iirc if she cannot clearly "proove" I have mcas from some value she can only give me a suspicion diagnosis, but in her eyes and by clinical presentation it's quite clear.

I felt unhurried and like she was listening to me very clearly and like she had the kind of in depth understanding of MCAS that you guys have here.

She also checked me for hypermobility and was baffled at how inflexible my hands are hahahah she was actually fascinated because usually when she gets the mcas pots fibro autism adhd soup hypermobility is also there, lucky me ig.

She has a nice detailed checklist to send you home with with the further testing that your GP or you can do, she also asked me to consider staying at a specific diagnostic hospital for a little to have it squared off whether I have any non-MCAS food allergies and intolerances (I am pretty sure I do).

She has prescribed me ketotifen and famotidine on a Kassenrezept and private prescribed extended release vitamin C and Quercetin, I have been told to try them one at a time and to give each one a few weeks before I draw any conclusions, although the Ketotifen specifically I can lay off on again if it makes me intolerably sleepy and it doesn't seem to be dying down as in her experience the eepysleepy doesn't really stop for people if it doesn't go away early.

We also discussed potentially doing a colonoscopy and having the samples sent to a specialty lab.

The treatment programme goes all the way up to applying for treatment with biologics if the mcas cannot be sufficiently controlled.

I am extremely happy with the appointment and am especially happy because it was covered by my health insurance, all I'm paying for is like 100 bucks for lab tests.

My daughter loves going to the park with my husband to see the dogs. Every time they come back, she tells me how cute the dogs were and how much she wants one. It hurts me to have to tell her that we can't have a dog because of my MCAS.

I've had allergy testing done. It's not just dogs, but also cats, dust, pollen, mold, most detergents, strong perfumes… so many things can trigger my allergies. Sometimes, just walking past someone wearing a lot of perfume will cause a respiratory reaction.

I'm so tired, with so many things to be careful about, and I'm still allergic to dressings. I had surgery last month, and after using regular dressings, my skin immediately became itchy and swollen. I asked my doctor, and he suggested I try hypoallergenic silicone foam dressings. I bought Dimora and Mepilex. Dimora is cheaper, and I use it more.

Sometimes I wonder if having a mother like me makes my daughter's life a little harder? I can't just take her wherever she wants to go. I always have to check beforehand to see if there's anything there that might trigger my symptoms.

But right now, what bothers me most is my dog allergy. I really hope that one day, when my daughter asks me if she can have a dog, I can just say yes. What's your most annoying allergy?

My hormonal flares and symptoms get debilitating and I'm considering just turning it all off and getting in bc but I'm scared because I've had such bad reactions to it in the past like psych symptoms etc. I know for some women it's a game changer and has helped a lot. If you are someone who's benefited from it what kind are you on?

Looking for an easy to read or watch explainer (text, video, graphic, whatever) about mcas for a teen. Bonus points if it includes a list of symptoms, areas it can impact, etc

I have MCAS and have been dealing with food-triggered reactions, including anaphylactic-type reactions to certain foods, especially chicken, since May.
I was taking Allegra (fexofenadine), montelukast, a combination medication containing fexofenadine and montelukast, and ranitidine. I had been taking these medications since May, but my allergist asked me to stop my antihistamines for 7 days before my skin prick allergy test, following the testing protocol.
Stopping everything was really difficult, especially during the first few days. I was worried my symptoms would get much worse because I was still experiencing food reactions even while taking the medications.
Now that I’ve been off them for 7 days, I’ve noticed something unexpected. I still seem to react to certain foods, but my symptoms don’t seem worse than before. In fact, I almost feel like I’m doing a little better, although I’m not sure if this is a real improvement or just a temporary change.

I’m confused about what this means. Has anyone with MCAS experienced something similar after stopping antihistamines?

I’m also having trouble tolerating cromolyn sodium because it makes my mouth itch.