It's been one month and I'm still experiencing the reaction from famotodine. My whole GI tract is inflamed. Imagine being allergic to a drug that is intended to reduce allergy

what enabled you to start tolerating medications and supplements again?

I’m trying to get a referral to immunology but have been knocked back by the GP and three private clinics have said they don’t deal with Mast Cell issues. Rather than keep blindly reaching out I thought I’d see if any of you have had luck getting seen? Thanks.

I can’t believe it. This disease is hell. This is what the allergist switched me over to from Allegra. Allegra I get zero side effects. Now this. This is hell!!!!

I suspect I have problems with histamine or a low‑grade MCAS. For many years, I had a large plantar wart on my big toe, as well as one on a finger. I froze them with liquid nitrogen, but they kept coming back. Trying to figure out the theory behind histamine, I took Allegra (Fexofenadine) for a week, and a miracle happened — the warts disappeared. This is definitely not a coincidence, and it turned out to be the most effective remedy. The reason for this effect is unclear to me; it may be due to problems with the immune system. Also, my brain fog significantly decreased while I was taking the medication. Also, if you’ve experienced something similar, tell me whether you have problems with your immune system, fat cells, histamine, or brain fog.

Hi all, I have mild MCAS and I'm researching Alovéa AE, a powdered Aloe vera inner leaf gel extract sold as a "proprietary acemannan extract" (56g jar). I came across it through an Instagram seller who said it helped his MCAS, but I'd like to hear from people with no financial interest before I consider it.
Has anyone here tried it, or acemannan in general? I'd love to know:

Did it help, make no difference, or make things worse?

Did you react to it, and how did you introduce it (dose, how slowly)?

How long before you noticed any change?
Were you taking it alongside antihistamines, stabilisers or other supplements?

Even a "tried it, no effect" or "had a reaction" is really useful. I haven't found any MCAS-specific experiences online, so I'm trying to avoid spending a lot on something with no real-world feedback. Thanks in advance!
.

Hi everyone! I see many posts saying tirzepatide or semaglutide helped MCAS, but mostly for inflammation.

For those who tried it: did your food and environmental triggers actually go away? Could you eat foods like hard cheese, tomatoes and coffee again, and stop reacting to smoke, dust, pets or chemicals?

A bit about me: right now I can only eat chicken and rice. Most foods give me palpitations, muscle twitching, fatigue, diarrhea and more, and smoke, dust, pets and chemicals all trigger me too. I also have medication sensitivities and can’t even tolerate antihistamines.

Did it help with any of this, including medication sensitivity, or mainly inflammation? I’d really love to hear your experiences. Thank you! 🙏

Weird neurological Symptoms, my mouth felt like acid and woke up at 3am. Severe severe feeling out of it. Chest pain. Thirsty. More hives. I think I might be having an allergic reaction to the Zyrtec itself. Severe severe histamine dump like never before .

Is this normal for Zyrtec ?

The question says it all. I'd like to know if it has helped anyone more than it has harmed them.

Typical is allegra AM zyrtec PM.

Ate something that i reacted to and im so fucking itchy. Its 1am and i want to go to bed and I cant

Normally atp id take hydrozyine and if i wasnt getting itch relief id at least be sleeping, but idrk about the effects on top of zyrtec since its duplication. I also have bladder issues and the urinary retention is something im aware and trying to avoid.

I also have been avoiding famotidine as its been giving me acid rebound.

Is there anything i can do 😭 i got shit to do tomorrow

Sharing the treatment “protocol” I’m trying (monitored by my provider ofc) and wondering if anyone has any experiences with it or maybe finds it helpful. This is not medical advice 1. 2nd gen antihistamine at double standard dose twice daily. 2. PEA 300 mg one capsule daily work up to 1200 mg 3. H2 blocker twice daily 4. Quercitin 500mg to 1gm twice daily 5. Vitamin C SLOW RELEASE 500mg to 1gm once daily. 5. Vitamin d 5000 iu daily (my levels were very low) 6. LDN 4.5 mg 7. Cromolyn sodium 4-8 vials daily with meals. Cromolyn topical ointment 8. Alpha lipotic acid and Luteolin 9. Consider : Ketotifen 2mg: one to two capsules once to twice daily. Montelukast 10mg once to twice daily.

This is tailored for my symptoms but also pretty similar to some general protocols I’ve seen. Wondering if anyone has had experience with any of these meds specially h2 blockers other then Pepcid, Quercetin and luteolin , and alpha lipoic acid.

Hello all, reassurance would be much appreciate! 👍

I have OCD, PTSD, ADHD, POTS, MCAS, hEDS, chronic pain from multiple labaeral tears and a spin fusion. I am only 27 and struggling to see how life will get better and not worse. 😖

With hEDS it causes dislocations that lead to surgeries most likely. With MCAS it is histamine related to where your body can get allergic or un-allergic to things at random. Allergic reactions causes inflammation in the brain which causes depression. I never know what I will have an allergic reaction to though. 🤕

My OCD growth has plateaued since my symptoms of these chronic illnesses started about 1.5 years ago. It is hard to think because POTS causes light headedness, brain fog, and trouble breathing. 😵‍💫

I am exhausted (not suicidal because of my two sons, I could not leave them) but I just constantly meet the end of myself over and over again. I feel like I have tried everything from medication, to therapy, to you name it. 🩺

Any advice would be helpful especially from someone who has OCD and chronic illnesses but any advice from anyone would help. Thank you!

He diagnosed me with this……
DIAGNOSIS: H10.45
Other chronic allergic conjunctivitis
J30.9
Allergic rhinitis, unspecified
L50.1
Urticaria - Idiopathic
R05.3
Chronic cough

I do not have cough. Idk why he would put that.

But anyways I am over it!!!! It’s been a year!!!!! All my blood work to check for allergies is negative.

I also have my first hives since 10/8 that do not respond to treatment and I’m getting more and more hives daily. I notice I get more whenever I am stressed. I let a doctor know who was covering for my PCP and she even said it sounded immune related and def a mast cells issue……..

I am 100% sure I have MCAS.

I just have shitty health insurance through Covered CA - Medical-Healthnet. Idk what to do. My skin is so hot to touch and feel im burning inside and outside with a lot of tachycardia. Idk who to go to.

Has anyone worked with gi docs elena ivanina or Sarah steinberg in nyc(separate practices). Ivanina is 1250 for a consultation and won't even let you talk to her first to make sure she's an appropriate fit so i wanted to know if anyone could provide testamonials.

I suspect I have MCAS but my symptoms are primarily respiratory in nature. I got asthma like symptoms and they don’t really respond to inhalers.
I was reading i need to at least two symptoms to get tested. Is that right?

Its been almost two years since I got mcas and till today everyday I get the why did I get this disease thought and flashbacks from my life before when I was happy and could eat anything use makeup, skincare workout ,didn't have to worry about getting mcas flares, could wat at restaurants with my family I some time think if I could get some time machine and go back to the life when I was all ok this feels like I'm stuck in a bad dream..I never ever thought my life would take such a toll. I was depressed before too but after getting mcas its next level. I don't do well with soaps, toothpastes even maintaining basic hygiene is incredibly hard. I miss being human. I see people living their life normally 80% of the world while I'm in the 17% trying so hard to keep going with all the depression and this disease. I need to hear some good remission stories so I could get some hope .I feel so alone in this journey. Plus the symptoms the throat globular feel it the air hunger wheezing makes you question if God forbid anaphylaxis could appear the constant worry. I feel like surviving each day not living.

I’ve been on Ketotifen for a few months now, started at 0.5 MG and titrated up to 1.5 MG 3 weeks ago, once every night.

I was on 1mg for about a month, and also felt noticeable brain fog, but at 1.5 it’s near unbearable. I kept hoping this would subside as my body got used to it, but I’m now learning that some people are just not responsive to certain medications that break the blood brain barrier.

When I was at 0.75 mg, I felt like it was somewhat working as my stress tolerance had gone up slightly (or so I thought) but ever since going up to 1+ I’ve seen no positive improvement, and the continuous brain fog just doesn’t feel like it’s worth it anymore.

I was really hoping this would be the magic drug that made daily life bearable, but my dermatographia/ urticaria has seen no improvement and I feel hazy all the time.

Has anyone else experienced something similar, and did going DOWN in dose actually help you instead of going up? I thought I had to work my way up to 2 MG twice a day, but Medical literature seems to suggest that some people actually respond better to a lower dose? or maybe genetically I’m just not meant to benefit from this medication.

Any advice or similar experiences, anyone can share would be greatly appreciated. THANK YOU

I’m feeling really bad right now from a flare up and I keep trying new things that the allergist recommends, then I react to it and it leaves me even more flared (nasalcrom, rhincort, etc)
and after three rounds I am flared, scared, and deep in the “ will I ever feel good again?” Blues. Please just let me know this too will get better…

Over the past year, I’ve been having a lot of health issues and recently saw an allergist who mentioned mass cell dysfunction as a possible cause. Symptoms include:

-Chronic fatigue

-Weird episodes after eating where my chest and abdomen get red and itchy, followed by facial flushing, anxiety/panic, tachycardia, urgent diarrhea. These reactions have increasingly become more frequent, now multiple times a week

-Also get the same kind of reaction of itching and flushing after any type of cardio

-I’ve also had weird neuro issues including vestibular migraines, brain zaps, internal tremor in back of head, neck pain and heaviness. Had a normal/negative brain mri

-I’ve also had ongoing GI issues and was recently diagnosed with IMO/Methane-SIBO. Which I know can contribute to histamine issues

All my blood work has come back normal including serum tryptase of 5. My allergist suggested I try Allegra daily for a couple weeks to see if it helps any of these symptoms. Any thoughts would be appreciated!

As the title said, I had a serious episode today. I am very sad as I almost made it a month without an episode… just looking for some encouragement as I feel so down right now.

I'm thinking back of the years leading up to this and I was so reactive ALL THE TIME. Everything bothered me, everything triggered me, everything angered me, I cried easily, I would overthink non-stop.
I had ptsd so put it down to that but it was so extreme. Like looping thought, couldn't let go of anything.
I'm now thinking it was mcas and histamine related. I had no control anymore.

That lack of control mostly made me think it had a physical cause.

I'm low on my iron labs and signed up for a ferric gluconate IV infusion while totally forgetting I am allergic to everything TM. Yay, MCAS.

Has anyone had success or warning stories with iron infusions? Is there a type that is more or less reactive?

Same question with blood transfusions, if anyone has experience with either.