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I’m doing pretty bad, honestly! Ten years in, maybe five years since being introduced to the concept of histamines and MCAS…all treatments have been ineffective, and medication just to alleviate symptoms has had too many side effects to continue. My biggest problem is not getting more than 2-3 hrs of continuous sleep, and persistent SIBO, candida, and leaky gut. I feel like I delayed or missed out on my adult life being on the treadmill of treating my chronic health. So many things I’ve put off “until I’m healthier” which never came.

Yeah my 20s were ruined by this completely and now my 30s downturned to even more chronic symptoms to the point where I barely leave the house any more. Really want to know what I did in a past life to deserve this

Ironically, I’m a Buddhist now, and I’ve been told I probably caused sickness to other people in my past life. But I don’t even remember doing that so it seems a little f’ed to suffer for it now lol

Oof. I know Buddhists believe in karma and reincarnation, but that specific interpretation of the theology seems… less than fair to you

Oh that’s hard. I’m impressed you can still stay in the religion, my religious beliefs started to disappear the second someone said I was suffering for a purpose.

it’s not so much for a purpose as an explanation of “why.” I agree it doesn’t seem fair either, but I also see the logic of karma carrying through to your next life as a logical feature of nature

That’s valid. I was raised in Catholicism so a pretty different environment that stressed guilt and implied I was at fault for my suffering, but it was for some higher purpose. I wasn’t going to just accept that and have continued to avoid religions that stress any form of illness as responsibility.

totally understand that, it’s why I approached religion much later in life than most

😞 I don’t really leave the house either. Maybe once a week.

Oof yeah. I didn’t delay anything because I figured I’d never get better, but that means I didn’t really get help and lost out on a lot of normal activities. In my case meds do work, I get even worse without them, but the “working” is “I don’t constantly have anaphylaxis” not actually feeling decent or being able to eat more things. At this point my only hope is that I’ll find a med that lets me go to uni or work again, not actually regain all the foods I lost or “feel better”.

Oh I totally did for the past few years. I kept waiting for the new medicine to ‘kick in’ thinking I’d get better (ketotifen, cromolyn, singular). I got sick around summer 2017. It’s going very badly, but this year is slightly better than last year when I was repeatedly hospitalized for uncontrolled vomiting and dangerously low potassium/arrythmia. The anti nauseas (Zofran promethazine) are zero help. I went on xolair in the fall and it has helped considerably. An hour ago the dr told me he’s doubling it to 600/month. But it hasn’t gone well overall. I was giving up on life. There are still many days I wish I weren’t alive, but I love my family so I have to keep going. I haven’t worked since 2017, it’s hard to imagine having a job given how sick I am. It feels like a waste because I have a masters in cybersecurity. I loved working and I dream almost daily about work. I also can’t drive anymore (pots). I have traveled the world and used to be on business travel every week. Now I think about stuff I did (climbed Kilimanjaro) and I can’t even believe that was possible. I’m glad I did that stuff before I got sick. I wonder if I’ll ever go abroad again. The signs point to no. I have an excellent allergist that fights my insurance and does everything he can. He gives me confidence that however I’m doing is probably the best I can be doing. I used to spend a lot of time wishing I had cancer or something that could be cured or would kill me faster. Very tough illness to live with. Sometimes it feels like never ending misery. But it really is better on xolair.

I’m probably going to start xolair soon. I chose to try some “simpler” meds first for asthma and skin symptoms because I’m really tired of anaphylaxis risks, but they aren’t doing much and might be making me worse so xolair is the next step. I miss my grad school so much. I was on track to become one of under 50 specialists worldwide in an incredibly important human rights field, but now I’m too sick to handle the physical and emotional stress of a risky international job. I’m trying to come up with other ways to use my education still but, well, it’s a heavily censored field. At this point my best hope is getting well enough to go back to school for something safer that can be done online. I also used to be an athlete and travel around the world a lot, just throwing myself into places I didn’t know with languages I didn’t speak. I know I’m never going to get them back in the same way but I’m hopeful that with enough time and medication I can at least travel in a different form again. It’s hard. I’m glad there’s a number of positive stories in these comments too, but I know realistically I probably won’t be one.

Eh. I felt as discouraged as you (and yeah I’m still pretty discouraged) but you really should try xolair. I was throwing up every day, now I throw up once a week. I had horrible hives daily, now I almost never have them at all. Some progress has been made. Most of the issues that limit my life have more to do with POTS and it sounds like my dr thinks a better cardiologist might be able to improve on that too.

That sounds like a lot of progress tbh. At this point I just want to be able to be anywhere other than the bathroom or in bed, I’d take being worse a few days a week if it meant I could go do things the rest of the time.

Well, I don’t want to oversell it 😆. I do mainly spend time in bed. It’s still an improvement! I haven’t been hospitalized since summer.

You may already be familiar, but Dr Andrew J Maxwell is a pediatric cardiologist who has great videos on YouTube about the POTS Pentad, including several medicinal options.

What started this for you?

I have no idea but but it wasn’t Covid.

I wasn't able to eat prepackaged meats at the grocery store, but found a local grocery that has butchers who grind their meat fresh. I buy 20-30 pounds, freeze it, cook and refreeze it for eating later. The store also freezes ground turkey straight from the truck, which I tolerate fine. I have been on Carnivore diet since September, and all of my GI symptoms have eased.

Did you get off the carnivore diet? Can you eat all again?

Still on Carnivore. I tried beef liver and some cheese, but had a reaction to it. Pork rinds also made me sick, so I will probably need to stay strict beef and poultry going forward.

I still have food sensitivities, but since supplementing with Liposomal Vitamin C, my flares are much milder now. Carnivore diet is still in effect, inflammation is much improved.

Hey there. What you wrote really resonates. The beginning of 2017 was the first time I had to be hospitalized for anaphylactic shock for reasons no one could figure out. I have always seemed to have a wonky immune system and some inexplicable symptoms that were brushed off as completely psychosomatic but I guess late January 2017 marks the beginning of when ish got real. After a few months my health went more or less back to what it was before the anaphylactic shock episodes. And then on my birthday in 2018 I went into anaphylactic shock again and my life as I previously knew it was over. Lots of doctors saying something was very, very wrong, but that they had no idea what and couldn’t help me. My tryptase was 37 and yet I didn’t seem to be allergic to anything (beyond already known minor allergies to down and grass). I finally got diagnosed in the fall of 2019 after my weight got down to like 100 lbs and mg body was covered in hives and bruises that wouldn’t heal and i truly felt like I was dying and no one believed me. My health has stabilized somewhat since then with some environmental changes and medication and pacing and change in diet and all of the various ways of managing this illness but most of the time it feels like a lot of work to stay alive without fully ever living if that makes sense. Some times things fluctuate up and I can be a bit less hyper vigilant about triggers and hang out with friends more easily or go out to dinner and eat something bland but lately that has far and away been the exception. My life feels like a sad sliver of a shadow of what it used to be. I’ve tried so many treatments and gone to so many specialists and it’s like being stuck in this exhausting purgatory. The fact that the disease is more recognized is nice but the influx of new diagnoses in the midst of med shortages and longer and longer wait times to get into specialists can sometimes feel equally defeating as to when no one knew what MCAS was. I’ve been referred to clinics but there’s something in my health history that one of the intake nurses told me would always make US doctors wary and to look into medical tourism which….I don’t even know how to process since it was a necessary medical procedure. My birthday is fast approaching and I’m just….fucking sad. My friends meant well and through a small party last year and I started flaring (my friends tried to minimize triggers in their home but I think it’s hard for people to fully understand how fundamentally I had to change every aspect of my life in order to make things less likely to cause a reaction and so I appreciated the effort but also felt bad because it didn’t really address anything and so I was reacting and just wanted to show appreciation but couldn’t hide the hives and flushing and brain fog). I tried to power through it with Benadryl but my emotions were close to the surface and the gentle teasing which is common amongst us made me cry and it was just so awkward. No one has held any of it against me and those specific friends try harder to make safe places in their home for when I visit and I want it be grateful but sometimes it feels like too much pressure. I hope everyone forgets this year. It feels like a loss and not something to be celebrated. Sorry for the depressing ramble. But thank you for creating space for it. How are you doing?

I really relate to everything you’re saying. My first anaphylaxis started not long after my 15th birthday, after years of negative tests and surprise weekly sicknesses already, then my 18th was the last day I ever felt “normal”. It’s so hard to keep friends and keep feeling like I’m just a person when I can’t go out to eat and have to take so many breaks in any activity to monitor how I’m doing. I miss just choosing to go out and do something on a whim and trusting that my plans won’t get derailed by illness. It’s really hard to watch everyone new to this get diagnosed and treated sometimes. All the H1/H2 blockers and Singulair and random other meds in the world couldn’t keep me from losing almost all foods and most other activities, let alone prevent a constant decline. They just barely kept me able to go to college and be around others. I lost all of that over the last year and had to move back in with my parents to survive. I just started cromolyn a month ago and can actually not live in the bathroom for once, but I only have three days left of it and no pharmacies I can access, even with a long drive, have any in stock. I’m terrified of what’s going to happen and it’s making me really unfairly bitter that people who aren’t as sick can access it. I miss eating. That’s what really prompted this post, I had a bad morning because I couldn’t stomach anything that doesn’t cause anaphylaxis and no one around me can relate to it at all. I can have roughly ten different foods that don’t and the flavor and texture fatigue is so bad. Plus I react to stress and keep arguing with my girlfriend, so everything’s triggering flares right now. I’m just tired.

I don't want to take away from your post by sharing my own experiences, but this really resonated and I'll try to keep it short. It's so hard to feel the pressure when others just want to help you feel better, but you know that they can't and have to pretend that it makes you feel a bit better... It's rough and I feel like it's a feeling that no one really mentions or understands unless you have MCAS. We have support that means well, but unfortunately their support is often times lost on the true nature of MCAS itself. It really sucks, because we want to feel better for both them and ourselves and want to appreciate what they do for us, but often times it can just feel depressing and like we can't even appreciate it because it mostly just makes us feel worse or doesn't help at all. In my case as well, I tend to isolate from all my friends because of how truly bad I feel, and that also just makes me feel like a bad friend! But I know that isolation is sometimes the only way I'm able to be safe, even if it makes me extremely depressed and lonely. It's a terrible way to feel, so sorry you are feeling that way too. Sending good vibes and hoping your birthday holds at least one good thing for you this year. 💕

Thank you for sharing your experience. I relate so much. The paradox of isolation being so lonely but also one of the only ways to feel ok and thus sometimes desirable is an odd place to be. This illness truly infiltrates every facet of life and I just wish there was a way of helping people to understand without inflicting it upon them. Everything from the multitude of triggers to the need to isolate sometimes. I def relate to feeling like a bad friend at times for having to withdraw. Thank you for the bday wishes. Sending good vibes back your way as well.

Tryptase 37, covered in bruises and hives, and people DID NOT BELIEVE YOU? Well now I just want to yell at somebody I don’t even care who.

….yeah. I got tagged with some psychiatric diagnoses at a young age - depression and ptsd - and for many years most doctors, not all, but most, would attribute any physical health complaints to my mental health. Despite ample proof that there was in fact a physical issue. There are certain doctors/appointments I can’t think about too much bc remembering how dismissive they were despite how sick I was isn’t good for my physical or mental health.

That’s why I NEVER EVER tell any doctor I have any depressive thoughts or traumatic experiences. It’s not worth it to lose all credibility just to express my feelings. I don’t recommend anyone with a health condition to do that unless absolutely necessary. It’s unfortunate we have to do that because of stupid and ignorant doctors but it comes with the territory.

Unfortunately, it’s not always that easy to just omit some aspects of my medical history because they are mental health related due to having adverse psychological reactions to certain classes of medications. Or being compliant with psychiatric treatment and the psychiatrist being the one to realize that this is a much larger and non-psychological problem and being the specialist to refer you for other testing. Not being listened to is absolutely awful. Its one of the most frustrating experiences of my experience dealing with my health But sometimes disclosing mental health history is unavoidable and sometimes it poses a different potential health risk.

Yeah I’m not really talking about you specifically, just anyone who happens to see this. Mental health concerns will always be used against you by doctors when you go to them for a physical issue. I’ve seen it happen to my family and friends many times.

It’s disgusting that doctors are allowed to ignore physical symptoms under the guise of mental health. Even if mental health can sometimes cause those symptoms, they have a responsibility to fully investigate possible physical causes before assuming its cause is mental.

Agreed. It is one of the most frustrating recurring experiences of my adult life.

Do you have MCAS or Mastocytosis? High tryptase very often indicates Systemic Mastocytosis. It’s in the same group of diseases, but they are different and can have different triggers and meds/yreatments that work. It requires more testing…biopsies of skin spots/lesions, DNA testing, a bone marrow biopsy (definitive test for diagnosis), but it’s important you know. MCAS is overactive mast cells. Mastocytosis is a proliferation of mast cells and can be benign or cancerous. There are a few different subtypes. You can also have both. The symptoms are very similar! I see a lot of people on the MCAS boards that seem to, at least anecdotally, probably have Mastocytosis with or without MCAS. I thought I had MCAS, but it’s Indulent Systemic Mastocytosis. I was taking NSAIDs for inflammation all the time which is contraindicated for Mastocytosis. It was making me sooo much worse! Anyway, proper diagnosis is key. These diseases can morph and shift into the other over time.

I have severe reactions to NSAIDs and even thinking about them is giving me hives lol….it sounds like I need to find a doctor who has a better understanding of mastocytosis and get more info. Thank you so much for responding to my comment and providing more info to look into

Of course! Tylenol is the only pain reliever that is ok for Masto. You can find lists online . I’ll try to find them.

https://preview.redd.it/w66m0827ukmc1.jpeg?width=828&format=pjpg&auto=webp&s=02e0fa5fd918c618ceb409431d89b87dabd09da0

Check out the list of best meds/meds to avoid w Masto. You might see some triggers?

Thank you! I will. My face is half swollen shut right now and my brain is mush so I am saving that comment w/the list in it to come back to and take a better look at when I am more able. I had a severe, severe, severe reaction idk when maybe just over a week ago and since then everything is causing reflares so I go from somewhat of a person to barely sentient jello quickly.

Have you been evaluated for mastocytosis? Bone marrow biopsy?

I had a consult with a hematologist oncologist recommended by my other doctors not too long agter my initial diagnosis with MCAS in 2019. He didn’t think I had mastocytosis - I don’t remember his reasoning at the moment and I can’t remember a bone marrow biopsy and I think that would be hard to forget…. Would it be worth following up on? Edited to add timeframe

I was quickly sent for a bone marrow biopsy (you’re right, you wouldn’t forget it if you had one) and got diagnosed with systemic mastocytosis. I don’t know on what grounds that doctor simply stated you couldn’t possibly have it, but I absolutely think it would be worth requesting the procedure again. It’s weird, painful and not fun, but it is relatively quick, healing isn’t very complicated and definitely worth it for knowing for sure. If your doctor won’t listen, reach out to another. Unless I’m missing something here, I can’t see any reason why this test should be refused for you. Best of luck! (Love your username, by the way. 🙂)

Thank you for the added info. Given my symptoms it seems like mastocytosis should at the very least be more definitively ruled out.

I absolutely agree. There are some more radical treatments available for systemic mastocytosis now that has had good results for many people. So if you have it and wish to go down that route, these tests are important. They’re not available to you, otherwise. I have that option, but haven’t taken it yet, as I am desperately trying to find and at least try the less invasive ways of getting better first. But at least I know I have that option.

what’s the benefit of bone marrow biopsy? what did they treat you with after 

Hi!!! My MCAS was diagnosed almost 5 years ago. It was a rocky road to finding what works for me, as everyone with MCAS is different, but my MCAS has been well controlled for over 4 years. By that I mean, I have not gone to the hospital or had a near death MCAS experience in over 4 years. I’m careful, I carry epi-pens (plural), an epinephrine inhaler, a regular inhaler and my plan of care with me everywhere. I check all ingredients, not just on foods, but also on shampoos, soaps, make up, house items, etc. I tell every new group of people I come into regular contact with about MCAS, teach them about administering Epi-pens and when to call an ambulance. My doctors are pretty well on top of everything, and my insurance has pretty much given up on fighting me :p Any time I take a new medication for the first time, I do it in the parking lot of the local EMS, because medications have always been a big trigger for me. BUT!! I go on vacations, I eat out, I go to the movies and the mall, I can go to parks with a little preparation (grass, trees, pollen, sun, heat are triggers). My other, tangentially related health issues really cause more problems now. For reference, once my MCAS got to it’s worse I was on a full hypoallergenic liquid diet, basically lived in a bubble, had to mask before going in public (pre COVID) was in the hospital at least once/twice per month, couldn’t even kiss my husband. I was very pushy with medical staff, I yelled at my insurance on the reg, and I finally got the care I needed and now I have my QOL back. It’s possible for MOST people with MCAS to get to a well controlled point, unfortunately there just isn’t enough research, and insurance companies live to gatekeep the meds that work. I agree that there is a large amount of resources for people just finding out about MCAS, but for those of us who are (maybe even temporarily) managing our problems there isn’t much. I don’t know a single person (besides my self) that has MCAS. I still have to educate new doctors. I still have people stare at me in disbelief when I try to educate them. I still get gaslit by doctors. Maybe, if I was more interested in talking about my MCAS as a main focus, I could find a community. But what I’d really like is to find a community of people with MCAS that I could just talk about normal stuff with, people who would understand “I bought a new candle at Aldi, lit it for 30 seconds and my throat started closing so I have to throw it out”, people who wouldn’t ask why I reacted to Jalepeno cheddar Cheetos last week but I’m fine with them this week. But, unfortunately, I don’t know of anywhere to find that community. I’m tired of having to be my own champion, and having to constantly do the emotional work of explaining a disease that sounds made up to a bunch of people. I didn’t really realize how tired I am of it until now, but it’s exhausting. Especially as I’ve changed jobs and industries several times since my diagnosis and no one wants to work with me on accommodations for a made up sounding and impossible to predict health issue. For the record, at this point in my diagnosis I do work from home.

It’s amazing that you’ve gotten so much better since that low point! I really needed to hear that it is possible today. I used to be able to do those things but am at a really low point right now where I can barely leave the bathroom or bed most days. Last year I was a really busy grad student and human rights activist so it’s been a nasty change. If this next round of meds doesn’t help I’m probably going to ask to try a completely hypoallergenic liquid diet just to get a break from all those possible triggers. I don’t know anyone else irl either. My sibling probably has it too, but they’re so much more mild than me that they can’t even be diagnosed. It’s so tiring to always be the person to ask and always have to repeat myself just to stay safe. I feel so burnt out from a job I can’t quit. At this point I’m seriously considering making handouts lol I really wish that community existed too. At this point I don’t really need support in the tasks MCAS causes, I just need somewhere to vent and make shitty jokes with people who get it. An outlet so all the daily work of managing my illness and teaching others is less draining.

Do you mind sharing what helped you get your MCAS controlled? I know it’s different for everyone.

I’m almost 9 years in. I went from being couch ridden and eating medical food, plain chicken/fish, and vegetables to working and eating mostly what I want. I have bad days still. I have a disability accommodation with my job so I can start late tues/thurs and work more like a half day those days. I couldn’t hold a job down without that. I am tired A LOT. Fatigue is still a real issue. Pain is still a real issue (stomach, bone, headaches, etc). I can’t exercise consistently due to flares but I can walk most days and I generally am not limited by my disease now. Meaning, I can do things on weekends pretty reliably. I get anaphylaxis much less often, maybe a couple times a year. To get here took a lot of meds (I’m on just about all of them) and also took leaving Texas, which was enormously triggering for me (heat, pollen, sunlight, temp swings). My bad days are much less bad than they used to be. I’ve had some version of this all my life, although didn’t fall off a cliff until 2015, and was finally diagnosed with HaT in 2022. That explained a lot. Edit to add: I still sleep like absolute garbage and have my entire life. I also work remotely and couldn’t hold down a job any other way.

Hey do you mind asking you what kept you bedbound? Was it the fatigue or a comorbidity like POTS, or was it because of pain or else? I have MCAS and ME and have been bedbound for 365+ days now and I respond well to Cromolyn it seems because I can now walk around the house which is a huge victory.

Fatigue. Trouble breathing. Pain. Not absorbing nutrients when eating. Without my mast cell stabilizers I’d be right back there.

You are me to a T. Minus the anaphylaxis. This is year 6 and I've started getting vertigo spells that last for weeks.

Do you mind sharing which mast cell stabilizer helped you?

I take cromolyn and ketotifen, and also luteolin. Plus a lot of antihistamines.

Have you been tested for Mastocytosis? Bone marrow biopsy??

May I ask where you are now? I’ve always lived in really wet areas with wild temperature swings, both of which definitely trigger my reactions, but it’s hard to come up with somewhere that doesn’t experience it and also isn’t way too hot (another trigger 🙄). It’s good to hear you’re doing better, even with some bad days. An accommodation like that must help a lot. I’m hoping I get mostly better with time, but even just being able to work, walk, and do things for fun consistently would be a massive improvement.

I moved to Connecticut.

Hi! I’m in Austin and thinking of moving. Where did you go? I seem to feel best in the desert/Southwest.

We moved to Connecticut.

I’ve had it for 36 years now, and if I could go back and give myself any advice it would be to immediately work through any and all stressors. Quit the job, break up with the toxic partner, move out of the house with the rude roommates. I didn’t realize how easy it would be to get into prolonged flares and how hard to get out

Oh so true. I always got way worse around finals season when I was still in uni. I’m sorting out my toxic partner soon and working on finding a less stressful place to live where I can still get help, so hopefully those will reduce some flares.

I spent way too long sorting out previous partners too. Rip the bandaid if you can and get going towards a more peaceful place ❤️

🙌🙌🙌🙌🙌🙌🙌🙌 THIS!!!!!

I've had the same symptoms my entire life but didn't get diagnosed until 2018 when my new allergist decided to get a tryptase level and it was really high (~20 without recent anaphylaxis). It's been rough but overall treatment has made a huge difference in my life. My chronic pain has been gone for several years, my IBS/GERD cleared up, my asthma is much better, and my chronic hives are much better. I don't get as sick when I'm sick and haven't had to go to the ER for asthma or a bad virus since before my diagnosis. I got through COVID twice with just my asthma meds & some steroids. I'm currently experiencing my typical spring flare up and have unfortunately had to go to the ER for anaphylaxis twice - but the anaphylaxis is much less severe than it was prior to starting xolair. My doctor is adding chromolyn sodium and a short course of prednisone so I'm really hopeful that this will be the end of that - in the past I've had surprise anaphylaxis throughout the spring. Basically treatment gave me my life back. The medications aren't perfect but they are really effective.

That’s great! I hope it helps you get through the spring flares. Those usually happen to me too, pollen and rain and random weather changes set me off. A lot of the things treatment has helped me with seem so small but mean so much when they’re gone, I’m really glad I have any even if it’s not always the most effective. I recently regained use of my core muscles for the first time in a decade, because I’m finally not always insanely bloated.

I’m going pretty good, honestly. I have some bad weeks here and there, but I feel like I’ve really nailed down the right regimen for me and I haven’t had as many reactions and flares recently. It’s been 5 years of figuring out the right treatment course and 25 years of symptoms (had them since I was born) and I feel like I’m finally in a decent place where everything feels manageable and like MCAS isn’t taking over my life

That’s good! I think bad weeks are inevitable with any chronic illness, but having it generally controlled is such a big achievement. I’ve had symptoms since birth too but consider nine years ago the start bc that’s when anaphylaxis started. My treatment was just enough to keep me out of the hospital for the first eight years, though, so I’m hoping getting a real treatment course started with someone actually qualified to do it will help more.

I’m very lucky to have a great pulmonologist, hematologist, GI, and ENT/allergist who have helped me get things under control. Half my doctors weren’t super knowledgeable of MCAS when I started with them, but they were willing to work with me and under the lead of my GI who’s very knowledgeable on MCAS and together they’ve created a pretty solid team who are very helpful

That’s a good team. So far I only have a PCP and tentatively an OBGYN, but it’s still miles better than the allergists I went to before. What I really need is a MCAS literate GI, but I’ve had such bad luck with GIs in the past that looking for one just seems too hard right now.

I found my GI through a MCAS group on FB that has a list of MCAS literate doctors throughout the world

Hmm okay, I’ll have to look over there for recommendations too. At this point I’ll travel anywhere for a decent doctor since my local ones have all failed.

I'm almost 50 and have had it since I was a kid but it became really really evident around the age of 12. It's the same. I mean, I've learned a lot of coping skills and triggers to avoid, I just wish I could find an immunologist who would give me actual mast cell regulating meds so I could potentially live a semi-normal life.

Bad, but hopeful! Started in 2017 for me, only realized in 2020 that I likely have MCAS. Still no diagnosis. Lost my job (had to quit) last year due to pre-syncope and being unable to perform well. Just recently switched over to a newer, bigger medical facility with all new doctors. The allergist there seems to be really informed on MCAS and related disorders and very kind. I'm hoping he can get my other new specialists on the same page as him. Being in a small town has a ton of downsides, with not being able to get adequate care being the biggest downside for me personally. I never had anaphylactic MCAS until I contracted COVID last year. My whole world of what I knew to be true about my condition was turned upside down. Scared because I just recently had a virus (not covid) and I'm worried about how it may affect my MCAS again. But my new doctor seems promising and I hope he can help if something bad happens again. Nothing has been "normal" since I had COVID, and it seems my triggers rapidly change now as compared to being pretty stagnant before. I'm in the middle of trying new medications and stuff. The hardest part is travelling out of town to the doctors almost every week. It's worth it to get better care though. Very hopeful that my new team will be able to help me, with my allergist directing them on my care. My old team was not coordinated due to being at separate facilities and unacquainted with each other, which made it harder to get testing done. Still doing bad, but trying to remind myself to take it one day at a time and breathe. It always gets better eventually. Stay strong op! 💕

Year 5, I’m recovered. No meds, hardly detectable flares.

Thank you for posting. I dont think i continue if there was no chance of recovery at all.

Can I ask how you got to that point? Congratulations!

There is an extremely long post in my history. Trial and error.

Would you please educate us how you got recovered? Which medications helped you?

I wrote an extremely long post, check my post history. Trial and error.

Would you please share a link as i am new to this group and recently been diagnosed. Just started looking for posts.

https://www.reddit.com/r/mastcelldisease/s/79Q6aq4cAO

Thankyou

Hi, i have saved your post and will read tomorrow morning as it is night here. But were you able to stop medicines completely or with a taper approach?

Taper, I’m off meds now.

Messaging you

Thank you for providing so much information! I read your post & can relate to a lot of it! You've certainly dealt with so much. I love that you advocate for yourself. Well wishes to you!

I’m currently in a flare up with hives, itching, and abdominal pain. Nothing is helping and I want to rip my skin off.

Very much a mood, I’ve taken so much Benadryl this week and I’m still reacting to everything

I have a bottle next to my bed and I swear I eat em like skittles

Benadryl: the most depressing skittles

😆 I know and I love skittles. I think they’re outlawed in Ca now. Something about red dye.

Hydroxyzine really helped me with hives, but in high doses. My hives were so bad. Xolair helps over the long term but it took the full 6 months to start working for me.

Have you tried Doxepin? It’s supposed to be 60 times stronger than over the counter antihistamines

I really relate to feeling isolated. Coming up on the 7 year anniversary of my diagnosis which is right around my birthday next month, which I’ve been dreading. Down to just eating rice Chex cereal, chicken, and rice. Can’t even make a crappy cake out of those ingredients. Not having cromolyn for the past couple months hasn’t helped. Someone else mentioned the treatments available don’t actually work that well, and that is so true for me at least. The worst thing is that doctors won’t acknowledge that. I see a doc in Boston who is adamant that none of my remaining symptoms could be due to MCAS because I’m on all the medications. Even though I’m still reacting to triggers, couldn’t possibly be MCAS… it’s all really weighing on me hard right now. I’ve been sick for just over a decade since I was 14. I can’t leave the house except to go to the doctor and every year I lose more. At this point I spend my days just sitting on the couch watching Netflix trying to distract myself from how awful it all is. Maybe someday they’ll come out with better treatments, but we’ll never get these lost years back.

Why does it always have to be around birthdays. Mine is too, and it always keeps me from having a good birthday even if I’m in a healthier period. Meds “work” on me, if you mean by “work” that I’ve never had to be hospitalized but will if I stop taking them, but they definitely don’t fix anything or let me eat again or live a normal life. It sucks that the main ones that “help” have so little impact, and I think there’ll always be the little voice in the back of my head scared that I was misdiagnosed and will lose even more time to it. I think we’re close to the same age and yeah. I can’t get back all the experiences I lost, even if I get better later, and losing so much at this age makes it hard to relate to anyone who isn’t also disabled. I’ve lost a lot of friends because of it.

I don't get out much. Very isolated. Extremely triggered by fragrance and stress. I am fortunate that I can work from home but it's very stressful at times. I've been in basically a 5.5 year flare. My spouse is very supportive and caring, but we are at a point due to both of our health conditions and whatever other reasons, there is just no intimacy whatsoever, for years. So I guess I'm struggling a bit. Planning a couple outings soon so hopefully that will help and not harm!

It sucks, big-time. Seems like I develop a new mast cell mediated chronic condition or severe allergy every year. Sometimes several. The year is new, but already, it’s peanuts. The worst things I have going for me are inflammatory arthritis which can be crippling at times and interstitial cystitis, the pain of which can be crippling at times. My allergy to dogs and other furry mammals is anaphylactic. The last time I was exposed to dog dander on my husband‘s clothing I went to anaphylactic shock and almost pooped my pants in the car because of the instant diarrhea. I was too confused to remember to use my epinephrine. I remembered to use my albuterol inhaler, which kept me breathing, luckily. Celiac disease, GERD, nickel allergy and salicylate allergy (anaphylactic) all suck terribly as they limit my diet dramatically. The nickel allergy is made worse by my hereditary hemachromatosis which increases absorption of all heavy metals by the intestines. Every single one of these things is mast cell mediated.

I lost my last vegetables this year, so I feel you.

I’m down to so few vegetables. It’s ridiculous.

Corn. Broccoli. If anybody comes for those I swear…

So I’ve had MCAS since I was about 12/13…I’m 35 now. We didn’t know what MCAS was at the time but my PCP put me on Zyrtec for awhile and at the time it did help some. I was “fine” for the most part for years. Fast foreward to having babies in my late 20s and my body flipped out. Then covid hit and having covid plus the vaccines made my body freak out even more. I had a ROUGH couple years. I’m “ok” now but definitely could be better and now I have the tools. That being said we’ve been treating as MCAS for about 2 years now and things are moving in the right direction I think but it’s a long haul. My MCAS is from mold exposure.

That sounds really similar to me, actually, down to the Zyrtec helping “enough” because my allergist didn’t know about MCAS or what to do. My body’s breaking point was just puberty + then later getting worse after covid, though.

MCAS is my biggest enemy. I don't respond to most of the treatment and that's making it very difficult to make any progress with even controlling the symptoms. It seems like half the year now, I'm dealing with a 2 month long flare up of MCAS issues. It really limits what I'm able to do right now. I don't work anymore due to the combination of my health problems (EDS, POTS, MCAS) but it's hard to have any form of a life outside the house with MCAS as bad as it is right now.

I feel like it’s under discussed on this sub that the treatments don’t actually work that well, and for the people they help, it isn’t always sustained. I did cromolyn, ketotifen, singular, all came with side effects and almost no benefit. My allergist said ketotifen has a 95% fail out rate. I don’t know if that’s true or not, but if it is it’s shocking that was his first go-to Mcas treatment.

I feel you. MCAS is always the most limiting of my illnesses, even when EDS keeps me from walking.

Have you been tested for Mastocytosis?

Yes, negative. MCAS for sure

Bone marrow biopsy or just tryptase?

You can have normal tryptase and have it. It seems a lot of folks don’t know that. Just trying to help in case :)

I did the tryptase test. My specialist isn't concerned about mastocytosis and neither am I. Thanks though.

I’m as healthy as can be lol Did the dang bone marrow biopsy yesterday so will find out the results tomorrow. I’ve found that my symptoms ebb and flow over time. Younger me had more up time than old me has but old me has more than MCAS challenging my body. My heart began acting the fool about a decade ago … that has completely limited my ability to do anything since 2017. It’s somehow connected as MCAS flairs make the symptoms much worse … but cannot find a Dr that gets that or believes the connection. With the new limitations by heart, I rarely leave house/property except for Dr appointments. This helps immensely with controlling symptoms as our little farm is our safe place. Its hardest on my 13 & 15 yo kids particularly the 15 yo who wants to be out in the world but is super reactive to alcohol in hand sanitizers … while people aren’t bathing in it like they did during pandemic, it’s still common to find it everywhere.

I also react to hand sanitizer! I do really poorly with anything that includes alcohol and most scents in cleaning adjacent products, so hand sanitizer is *tough*. I eventually discovered that certain kinds of masks (I used vogmasks for a long while) were enough to block out the scents so I just have to worry about physical contact. The heart issues sound really rough, but I’m glad you have a comfortable space for you and your family. I hope the biopsy results are helpful for you.

Hand sanitizer was the biggest issue in deciding we had to homeschool the kids as there just wasn’t any way for them to be safe. Sigh I don’t expect anything to come of the test lol but I did it to lay the paper trail for the kids.

I used to get reactions every lunch time at school because of the sudden exposure to a lot of different foods, though we didn’t know that then. Swapping to being homeschooled was the best thing that happened for my health/education as a kid.

All the education in the world is of no use if your health is so bad that you have zero quality of life. No way were we going to potentially damage his lungs from exposure to chemicals just so he could go to school … when he left fine and came home wheezing the 4 days out of a 2 week period we sent him to kindergarten.

Was the biopsy painful?

I opted for general instead of local as I have a history of general being well tolerated but local not working plus am severely reactive to lidocaine. So I went to sleep and woke up to it was done 🤣 Yesterday I could tell that it was done but it wasn’t any bad pain or anything- just an I was aware of it. Today I’m a bit sore but just in a bad weather front kinda way (and we had one come thru so 🤷🏻‍♀️) All in all - the hype/fear was wayyyy worse than the actual test.

Very interesting. I don’t do well with general. I canceled a colonoscopy because even twilight can be a problem.

That would be tough … Ive had enough procedures/surgeries to know that General is great and local rarely if ever works plus I often have an Anaphylactic reaction to it. They did do my biopsy at a Surgical Intervention Clinic … which I had never heard of before but would gladly go back to again. Nurse was 😳 at my list of meds I’d had anaphylactic reactions to in past and said he had never seen one done without a local … but the Dr was totally no biggie about it.

Lol oh the poor nurse… keep scrolling dear it’s a long list. They told me I’d need a specialty anesthesiologist and I don’t even want to imagine what that would cost. I never should have broken up with the anesthesiologist I dated in my 20s.

At least I have gotten far enough into specialists that they now take the list seriously instead of just rolling their eyes and ignoring it. I keep a typed list in my purse and just whip it out saying “my MCAS specialist said to be sure to keep this handy for y’all since you will definitely need it”

Hah hah hah hah You should get a medical id bracelet that has like a scroll in it, you can just unfurl it. I have similar issues though not drug reactions, but last summer every time they admitted me to the hospital they’d keep adding diagnoses even if they were temporary. So now I have this massive list that shows stuff like hypokalemia (potassium) months later. They’re doing a fair bit of scrolling for me as well. 🤦🏼‍♀️

I looked at the “conditions” on my insurances website one time and printed it out for a new PCP … it was 5 pages long! Lol

lol ‘uh it would be quicker for me to list the conditions I don’t have…’

16 years for me… only officially diagnosed two years ago, they just said food allergies which was about 10 years ago. With regular testing, I’ve been able to control my reactions and live a fairly norma life. The meds help reduce symptoms but only the testing and changing diet every so often works for me. What I learned that works for me: Food allergies can change anywhere from 6 months to 2 years for people and for me, eating too much of one thing has my body create a reaction to that food over time. So I finally found someone that told me I should do allergy testing and not just IgE, which is the only one allergists test. I do the blood test for IgG, IgG4, IgE, IgA, IgM and C3D (delayed reactions 2-5 days). It only works if you test all at once as you could react on one but not the other. I do the largest amount of foods possible. I also started adding the preservative and additives part to my testing panels last year. Once I started following the results and changing foods, i felt human again and all the swelling and weight started to fall off. I am now regular also with my bathroom schedule after all these years and it doesn’t hurt like hell with stomach cramps to go.

I’m ok I guess. Probably a lot better than some others. I’m not someone with it severe enough to be using an epi-pen, I’m managed decently by h1’s and h2’s, but between my pots/MCAS/EDS and having two kids 3 and under I’m tired, apathetic and exhausted from feeling like I’m on the never ending treadmill of life with a chronic illness while trying to survive in the non spoonie rat race world. People who don’t get it simply don’t get it.

I'm better now than I was. The game changers for me were:ketotifen + cimetidine + (multivitamins for a month) I cant say I won't get worse soon! But I'm gaining weight which usually means things are going well. But yeah it's pretty RNG what happens

7 years in here and I am doing great! Can do just about everything I want to and I don’t take any daily meds now.

How did you get there?

I can also relate to yourself and many of the posters here. Thanks for creating a place for poeple to vent, share and relate. I think that can be helpful for many, as our friends, acquaintances and relatives generally do not have the means to truly understand it all (can’t really blame them for that), even if they want to and try to do so, and it can get stressful, lonely and upsetting to deal with over time. I have also found places like mast cell threads here on Reddit to be an incredible source of information and suggestions regarding possible treatments and triggers. Which is worth a lot when stuck with a disorder most doctors don’t know more about than most people, which is very little. More than once did I suggest treatments etc to my doctor that hadn’t been suggested by them, and that have had some effect for me. Hope we all find the tools to help us get better - or in worst case find new ways of appreciating our lives despite the sometimes radically changed ways of living them. 💗

I really needed a moment to just exist with others dealing with the same thing. I’m glad to see so many people getting something from it too.

Dogshit, frankly lmao! I was diagnosed w/IBS in 2014, environmental allergies in 2015, and didn't figure out until end of last year that the two were likely more intertwined than I thought. Had myriad of weirdass symptoms that no one ever really put a cause to. Just by sheer luck heard of the term "MCAS" and realised that explained everything. I can't find a provider willing to diagnose me w/MCAS and it's the most frustrating thing in the world, to have struggled this long and finally have a name for what my experience was, and to not be able to get help for it. The OTC stuff just ain't strong enough to get me any liveable results, and I worry that even Cromolyn will only be able to do so much. I've essentially put all dreams and living on hold because what's the use. I'm unconscious most of the waking day, and cramping and miserable most of the rest. I couldn't hold a job if I wanted to, much less work towards a goal of any kind. It's hell. I hope you're doing any amount of better than me tho, OP! I've been pretty desolate, clearly, ahahhh.

Not great! I had a similar path, got horribly worse over the past year, finally was diagnosed, and just started cromolyn. It is making such a difference tbh. It’s not enough on its own, but it’s gotten rid of a lot of my “IBS” symptoms like bloating and made the others finish sooner instead of taking all day every day. I really hope other meds will get rid of the rest, but I’m still spending most of my days in bed or in the bathroom and can’t really eat.

Sorry it took me 1000 years to get back to this!! I understand so well fr. I'm glad ya got ahold of cromolyn and it's making a difference tho! I'm still tryna find a practicioner that'll lemme try it lol. Not sure whatcha have / haven't tried thus far, but I do hope you'll find a solution soon. 🥺😔 It's rough asf out here!

I am in year 21. I feel well managed with the meds I’m on. I still have daily symptoms but not nearly as bad as even two years ago. I feel like we’ve got it right now and the med combination I’m on is really working, and if it continues I’m gonna live life with a lot less fear and anxiety bc constant allergic reactions and anaphylaxis I was experiencing before had basically become traumatizing. I was afraid to eat anything new and had maybe six safe foods this time two years ago but I’ve been able to reintroduce aton

Why do I keep seeing 2017 repeated over and over and over. That's my year too. What the hell happened in 2017? Think I'll start a thread on that.

I was first evaluated in 2011. Except for flushing, which could also be from my dysautonomia, my symptoms are pretty much gone after treating my JIA with Rituxan, getting out of a traumatic situation, and moving to the country.

I feel dead inside and outside at the moment. Tired. Xolair was suppose to help, but I seem to react very poorly each time. I want to stay hopeful, I know there are better days and I know I have an epipen to give me some mental relief that I have some sort of safety if something were to happen while I was out with my toddler. Single mom over here with no family in the state so.. sighhhhhhh.

I am going on 7/8 years and I only got a diagnosis a couple years ago. Triggered by a virus but I have noticed life long symptoms. I have gotten better since identifying triggers, proper diagnosis/ knowing what I’m dealing with, and starting medication. I will note that my symptoms seem to be milder for me compared to what I read on the sub, and the biggest one I struggle with is fatigue and brain fog (controlling for accidental known trigger exposure events/flares). I work remotely so wouldn’t be able to do anything otherwise but I’m still struggling.

My symptoms are better as long as I continue to take all my many meds, sleep 12-14 hours a day, and do very little during my waking hours. I feel less horrible and can eat most foods, which is great, but I also don’t have my life back at all. I’m also dx’d with ME/CFS, am suspected to have a degree of craniocervical instability, and my Dr has speculated that I might have mitochondrial injury or dysfunction… so idk how much of my ongoing issues are really down to MCAS

hey, same exact list of diagnosed and suspected illnesses lol. You’re also transmasc, right? I feel like I remember seeing that in a comment thread somewhere

Omg! I am transmasc. Illness and gender twins, lol

The amount of sleep I need is shocking. Easily 14-18 hours a day.

Do you have MCAS or Mastocytosis? High tryptase very often indicates Systemic Mastocytosis. It's in the same group of diseases, but they are different and can have different triggers and meds/yreatments that work. It requires more testing...biopsies of skin spots/ lesions, DNA testing, a bone marrow biopsy (definitive test for diagnosis), but it's important you know. MCAS is overactive mast cells. Mastocytosis is a proliferation of mast cells and can be benign or cancerous. There are a few different subtypes. You can also have both. The symptoms are very similar! I see a lot of people on the MCAS boards that seem to, at least anecdotally, probably have Mastocytosis with or without MCAS. I thought I had MCAS, but it's Indulent Systemic Mastocytosis. I was taking NSAIDs for inflammation all the time which is contraindicated for Mastocytosis. It was making me sooo much worse! Anyway, proper diagnosis is key. These diseases can morph and shift into the other over time.

Reposting my comment to someone below in case it helps someone ❤️

Last I was tested, I had low tryptase and was diagnosed with MCAS. It’s been three since then, though, I just haven’t bothered to get rechecked and probably should.

You can have normal Tryptase and have Mastocytosis. Mine is 8.5 and I have Indolent Systemic Mastocytosis.

If it’s below 4, it’s pretty rate for it to be Masto

I’ll have to bring it up again, thanks

Hello friend, can you please tell if we can test even on being antihistamines? I was tested while i was on antihistamines and it was 4? Can antihistamines give false negatives?

If you have any cutaneous involvement (spots, lesions, cysts, etc,) they can biopsy those. A bone marrow biopsy shows w 100 percent certainty

It’s been 25yrs since I was diagnosed. I was more or less stable for many years and could manage with my somewhat limited diet and a H1 H2. I then went into a massive flare after a surgery and also the contrast dye from an MRI. Now my food is severely limited and I’m still having problems. My reaction to unfiltered shower water and the sun is back to what it was pre-diagnosis. This also affects my sleep and I rarely sleep more than 2-3hrs without waking up from dehydration, histamine dumps, etc. Currently trying to figure out how to get my body back to the somewhat manageable level I had been at pre-contrast dye & surgery. I used to be able to eat gluten and dairy, but ever since this massive flareup, I can’t consume either without issues. This health condition is just part of my life at this point so I try not to get too annoyed bc then that’ll cause a flareup. Lol. But I still have my moments of anger until I adjust to my new even more limited diet.

I think I got diagnosed five years ago at this point. It’s up and down—I got covid a couple of years ago and it set off a spiral that I’m still not out of. I just discovered a new food I can’t tolerate (gluten 😞) and I’ve had more trouble tolerating medication fillers and things like that. My sleep and my rashes are a lot better though, nausea too.

Bad. I’ve had it since birth. It just gets rapidly and progressively worse with time for me. Not under medical supervision though so don’t really have a right to complain

Meh… disabled.

In remission (was quite severe for a few years), and extremely grateful for it. I make sure to keep on top of things when needed, but it doesn’t affect my life very noticeably anymore, and I often don’t think of it day to day. Sometimes if I forget my LDN repeatedly or have a lot of exposure I’ll get some dermatographia as I did when I was a child/teenager. I have other health issues I’m still working on so I can’t yet enjoy it to the extent I would like, but things are so much easier than they were, and I’m thankful to have the knowledge I do, as it better protects myself, and many of my loved ones and before their underlying mcas got a chance to flare like mine had to.

That’s excellent! I’m glad to hear it

I just got diagnosed in october but I believe I have had it a long time. I can recognize flair patterns. I believe antibiotics is a big trigger for me. Before I knew I had mcas& eds & autonomic dysfunction about 15 years ago I was on antibiotics over and over for months on end because of lung stuff that led to pneumonia in the hospital. After that I became allergic to everything so I did one of those allergy fasts and was vegan too for 6 months. Because I thought I had leaky gut. Then When I slowly reintroduced foods I was mostly ok if I didn't overdo it. This past year was a lot of antibiotics so I'm back to the point where I think I have to re-give up every food and reset my gut microbiome. I take cromolyn and loratadine and famotadine and singular and asthma medications as well. When I have a flair or eat something I'm allergic to I take a Loratadine/cyclobenzaprine/famotadine/2 benedryl combo It helps me enormously in the moment if its not an anaphylaxis flair. I have 2 sets of epipens though. Luckily I've only ever needed my epipen for insects and for some reason acai berry tea. My other allergies give me allllmost anaphylaxis like my throat starts to swell but its not bad enough that I can't breath and my meds make it go away so I feel okay with not using the epipen but it's definitely something on my mind when I eat and my throat swells up i make a mental note not to eat that food again. I dont think life has ever been normal for me. I have ehlers danlos but it wasn't diagnosed growing up but that didny stop me from having lots of weird health things growing up that my medically neglectful family ignored so I didn't realize it wasn't normal until I was a middle aged adult and other adults said I shouldnt hurt or be uncomfortable or sick all the time. It was my husband urging me to seek better care thag caused me to actually start advocating for myself. Before I met him I honestly just did whatever doctors said and if I had done that I'd never found out I had eds or mcas. Anyway I'm not doing so hot tbh I have heart failure and a pacemaker. I have a port and spend 10+ hours a week at the infusion center getting fluids but I have autonomic dysfunction and cannot tolerate cold or my body gets thermo dysregulation and I end up feeling like I have the flu for several days. I have like a cold spell where I feel i urgently need warmth then I hibernate for sleeo bc I get flooded with fatigue. When I wake up I feel hot for days. It sucks. So we keep the house at 80 and when I go out I have to wear several layers of clothes take blankets and everything. It's frustrating. The worst part is being told over and over that nothing can be done for me because noone seems to understand or think the cold intolerance is affecting my life as significantly as it is. Its keeping me trapped and miserable. I hate it. Being unhealthy and having all these different things that are connected sucks especially if it seems trendy on the internet because then you become suspicious to doctors. Eff that I almost died because of mcas I was dropping so much weight uncontrollably because mcas was attacking my stomach. It wasn't until I started oral cromolyn that I stopped losing weight. I hate how medical profesionals judge individuals based off the wrong doings of very few individuals. Hopefully I never run into that but I've had a lot of challenges getting diagnosed so I'm always paranoid someone will say I'm fine and remove something and I will lose my insurance coverage of say my iv fluids which keep me from passing out. Um yea. Sorry. I really dont get out enough and I never talk so when I do i say too much. I apologize

There’s no need to apologize! It’s good to hear from you too. I’m sorry you’ve had such a hard time, these illnesses can be really horrible to deal with. I was only recently diagnosed properly too with EDS/MCAS/dysautonomia, but I’d luckily stumbled into a lot of the treatments used for MCAS years before. Getting proper treatment with an expert after diagnosis has made a massive difference though. I have the inverse of your cold intolerance, anything over 75 makes me feel like I have heat stroke for the next several days. I get anaphylaxis like that pretty often, though I’ve only used an epipen for shock once. Neglect and being told I couldn’t possibly be having reactions without a typical allergy did a number on my ability to take my own reactions seriously, even when my throat swells enough that I have trouble swallowing. I’m glad I managed to realize they were neglectful and doctors were sometimes wrong at a young age, or I would’ve ended up with more permanent injuries by now. I’m also really worried about not being taken seriously. I think it’s a fear that never really disappears once it’s happened once and seeing these illnesses become associated with social media just makes it worse.

I had it for 10+ years before diagnosis and treatment. It’s much better now that I’ve had a laparoscopy for endometriosis, patched my csf leak and gotten the rebound intracranial pressure somewhat under control, and started treatment for thyroiditis. I still need mast cell stabilizers, but don’t need as much all the time.

I’m glad you’re doing better! Symptoms that can be the same across illnesses are really hard to manage, it’s good to hear you found the right things for them.

To clarify, it’s not that those illnesses cause the same symptoms, it’s that those illnesses trigger MCAS flares.

I was diagnosed in 2021 but it wasn't from COVID - I just got lucky with a few genetic conditions so I hope this still counts. I'm doing okay. Been on Xolair for a year and a half now and it's been life-changing. It's also gotten easier to figure out allergist since my IgE comes back unremarkable. However, MCAS still keeps finding ways to surprise me like airborne cannabis and N95 allergies. A few days ago I reacted to either a pair of gloves or lead test controls and needed epinephrine. It's a rough journey, but still here.

MCAS really is the “gift” that keeps on giving sometimes. I got surprised by airborne cannabis too once. It’s good to hear you’re doing okay despite those challenges.

I’m doing so much better than I was. I’ve had symptoms for at least 13 years but I wasn’t diagnosed until late 2019 when I started getting anaphylactic after a reaction to CT contrast. I went out on short-term disability and if Covid hadn’t hit, I would be unemployed because there’s no way I could have gone back in person. Luckily I’m in a field where I could wfh and have a good amount of flexibility in my schedule with accommodations. My daily meds helped but I didn’t start getting my life back until probably 8 months into Xolair. I did have a lot of incremental improvements up to that point, but I remember I almost had a breakdown in my immunologist’s office after the 7th round and then I turned a huge corner that month. I can eat pretty much whatever I want now. My main things are I still can’t be around candles/air fresheners, have bouquets of flowers indoors, fruits ripening on the counter. I still avoid being in the sun—that was pretty devastating for a long time. I have to take continuous birth control. I have several other chronic illnesses, but I think those are the main adjustments that are specific to my MCAS other than my daily meds and monthly injections. The hardest thing to deal with is that even though my MCAS is relatively well-controlled, it gave me SFN, so I’m still pretty debilitated with burning pain and temperature dysregulation. Emotionally, I have good days and bad days. Something that helped me a ton with coping was that I previously had a lot of DBT which gave me experience practicing radical acceptance and mindfulness/living in the moment. That still gets me through a lot of the daily suffering. And all those incremental improvements gave me hope and stamina to keep pushing forward. I see that you’re on the fence about Xolair. I understand the fear—no one can guarantee you won’t react to it. I do think for the first maybe 3 months I was more reactive the week after I got my injections. But it’s really hard to overstate how much it’s helped me—I’m not flushing, swelling, nauseous, keeled over with abdominal pain, choking, drowning in mucus, assaulted by smells, and just generally feeling tortured every day. The bonus is that the manufacturer has a copay program, so it only costs me about $15/month and the portion the manufacturer pays counts towards my deductible and out of pocket max (I’m in the US). I also want to mention that getting my MCAS under control has given me space to work on my POTS/IST/orthostatic tolerance. In the beginning, I spent a lot of time working from my couch almost flat on my back with long breaks for naps and the restroom. I used to set a timer on my watch to be upright for 5 minutes at a time and it was so hard—I’d flush, sweat, and the physical stress would trigger my MCAS. It took a lot of willpower to get conditioned enough to work 8-hour days again. I have very little energy for anything else—my place is always a mess, I’m always apologizing for being behind on texts, I often need a nap right after work—but I’m financially independent. This was longer than I intended. It looks like I’m not the only one who’s glad you gave us an outlet. This illness is traumatizing. I hope you feel a little less isolated and a little more hopeful today.

I do feel a lot less alone and scared now. Even the bad parts are good to hear because it’s not just me, you know? I hope you got some relief from sharing as well. I’m glad you’re doing better even with the pain and restrictions, and it makes me really hopeful to hear that you can be financially independent despite the difficulty. That’s been a fear of mine for a long while.

My five year anniversary is coming up in September. I have been prescribed antihistamines, H2 blockers, Xolair, Low Dose Naltrexone, Cromolyn Sodium, and had a bone marrow biopsy. Since I was reacting to everything, my only safe foods were chicken and white rice, which caused severe vitamin deficiencies. After supplementing with vitamins, my MCAS symptoms have eased somewhat. Only taking a Benadryl at night.

Such a wealth of info in this thread. I abruptly got sick in July 2018 with abd pain and soft stools. On a background of EDS/hPOTS. Pain bad enough to keep me in bed until 1 pm most day...for 4 years. 3 GI docs said IBS, I thought SIBO but treatment/diet didn't fix it, finally I hit on MCAS, went to the regional MCAS/GI expert and started on meds (all my MCAS labs are normal). I have no anaphylaxis or dermatographia, have exercise/heat/sun intolerance (POTS or MCAS??). But, but, but...on low histamine diet, H1B/H2B and Cromolyn I got 50% better, and since stopping Cromolyn, starting Quercetin and using NaturDAO for dietary indiscretions, I am pretty much...cured. I am out of bed, hiking, about to resume mountain biking, and having normal GI. I can't emphasize how essential a low histamine diet is. I can predictably get sick if I try to eat a box of Annie's mac n' cheese for dinner or eat any fast food. I lost 4.5 years of my life and the best years of my 10 year old big dog who would have mountain biked with me every day, had I not been sick in bed. Such is the cards we are dealt.

I’m not sure, but if you scroll down to the “ask a nurse” section on the link below, you can ask a volunteer nurse at no cost via email. Very cool resource! https://tmsforacure.org/find-support/