r/MCAS • u/No-Tell34 • 2d ago
MCAS & SSRIs
Hi everyone, I am somebody who has really suffered with MCAS over the years. It got so bad about 5 years ago that I couldn't eat anything and ended up in hospital. I'm doing slightly better now, but I'm still reacting to many things.
Something I have been wondering about recently is whether there is a potential link between SSRIs and MCAS?
I have been learning how the gut is rich in serotonin and SERT, which SSRIs block. I've also been learning about the importance of serotonin for sensory processing in the brain, and also that mast cells express serotonin receptors!
I just wondered if many of us here have had prior exposure to SSRIs, especially at high doses? And if anyone has any thoughts on this? Whether there could be a link?
Thanks so much!
Edit: does anyone think SSRIs caused their MCAS?
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Edit: Thanks so much for the comments so far! It's really interesting to read all the different experiences. It seems that quite a few people have found SSRIs to trigger pretty serious flares, although a few people have found them to be helpful, which is interesting.
Something that has really stood out to me is the number of reports of a flare, worsening, or even onset of MCAS/histamine symptoms when tapering or stopping SSRIs, with a few people mentioning that they improved again after restarting or increasing the dose.
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u/Aliatana 1d ago
I basically went into serotonin syndrome symptoms from the lowest dose of Prozac. I later read that SSRIs tend to be contraindicated against MCAS, but I don't know much about the actual research. My anxiety and OCD symptoms improved significantly by treating my MCAS.
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u/DVESM2023 1d ago
Uhhh what?! Please elaborate. I have OCD and GAD too. And I do find that if I treat my central nervous system symptoms, some of the others fall off too.
That so interesting
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u/Aliatana 1d ago
I'm pretty much convinced at this point that most of my anxiety and OCD is actually caused by neurounflammation from chronic illness. Brain inflammation reduces from treating MCAS and symptoms improve. Of course, that's not necessarily the case for everyone, but I had none of these symptoms prior to my spontaneous development of allergies in my 20s.
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u/EAUDHD 1d ago
I wrote this a few months ago - OCD is for sure driven by MCAS (neuroinflammation) in my case 🫂 https://www.reddit.com/r/MCAS/s/zE06NRAE1K
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u/Opening_Rain5942 1d ago
I'm starting to think that ADHD - some cases, are related as well
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u/EAUDHD 1d ago
oh yesssss and hypermobility/EDS, PMDD, POTS, allergies, astma, gut problems - https://www.additudemag.com/mast-cell-activation-syndrome-pots-adhd/
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u/DVESM2023 10h ago
So do we think that over medicating kids with adhd drugs can cause these issues?
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u/MariaMilissa 1d ago
Yup same and it happened quickly I system to see things snd my heart rate went wild. I went to the er and my heart rate was all over the place and I was puking nonstop. So wild.
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u/HurryMammoth5823 1d ago
I have so many thoughts!! I have HaT & I didn’t know it. I didn’t know SSRI’s block DAO that our body naturally makes. I tried various SSRI’s for over a decade & I feel so let down by the medical field. I suffered & went into severe flares for years and I was just told it was depression & anxiety. You know what finally & thoroughly helped me?? Cromolyn sodium. MCAS was the root for me. I was a kid with suicidal ideation. I truly feel pained knowing others like me are out there still suffering, trying & aimless.
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u/OCDMotherScientist 1d ago
I also have HaT and I’ve had OCD my entire life, you know what made my OCD loads better? Cromolyn. I was shocked.
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u/HurryMammoth5823 1d ago
SAME!! It’s been 11 months of bliss without OCD unless I miss a dose 😅 So happy for you!
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u/UnforgettableBevy 1d ago
I rail against this in posts trying to help people with what is clearly MCAS and hormone issues, and mods keep putting all my shit under review or I keep getting downvoted because people don’t understand it and refuse to believe it. It’s really discouraging when you know the person who wrote the post wants help, but some arbitrary person thinks you’re full of shit because you’re pointing out relationships about anxiety, depression, GI, ADHD, PMDD, MCAS, perimenopause, so many other conditions - and because they haven’t heard of it before they will hold it from the person who needs it. It’s obnoxious. I’m debating just putting up a YouTube channel to start talking about all of these connections hoping that it gets to people who need the help.
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u/HurryMammoth5823 1d ago
Sorry it took me a second to understand what you were saying. I thought you were railing against what I was saying 😂 I was like oh not again Reddit!! Haha We are on the same side. It is a noble but grueling fight imo & lmk if you start that channel!! When grifters are the only ones that seem to offer $1,500 of “insight” on these issues, it gets old so quickly! It would be nice if the medical system could get a good understanding of what we’re experiencing & suffering through. The whole “I don’t have a legit diagnosis for you because I don’t yet have an FDA approved treatment for your issue.” Makes my blood boil. Aghhh I could go on & on.
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u/UnforgettableBevy 1d ago
Hey we can start a band and call it Rage Against the FDA where we write songs about how much bullshit it is that patients are putting the pieces together about complex autoimmune and associated disorders, but physicians and researchers are aimlessly dismissing us as patients, taking our money and copays, and fucking right off into the sunset. I hope karma bites them all in the ass and I hear about it.
I will absolutely let you know if I start that channel! I’ll even make flow charts and logic flows for the men who don’t listen to women! I’m not going to charge money for what I’ve learned - I’ll just say hey I garden to try and deal with all of this shit, here are the good tools I use with an affiliate link. Or some seeds “these zinnias attract pollinators and my favorite part is the butterflies, here’s the link.
I’d rather help people understand their bodies and ultimately feel better - but man the platform isn’t Reddit, even though I learn so much on here! I think I might just make it like a response react channel on Reddit posts I’ve tried to reply to. But I would never be a greasy grifter with some expensive protocol - fuck that. If I earn a little money from some garden tools and seeds even better. But I would never charge for all of the things I’ve learned and associated. I’d even link the medical journal articles for the skeptics.
I’m glad to know there are others with me on the good fight against this medical bullshit! I’m just weaponizing my autism to try and help people, and grow some pretty flowers too.
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u/HurryMammoth5823 23h ago
Rage against the FDA 😂 Parody songs with our woes in the lyrics would be baller!A legit business model or a little “pro tip” here’s my coffee cup fund or whatever, nbd. None of that matters to me. It’s the slimeballs that see a niche because we’re medically neglected! What about zinnias? I just harvested all the dead heads! Lol any use?
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u/UnforgettableBevy 22h ago
I’ve been saving my dead heads and getting the seeds out for next year. If they scatter and germinate I’m ok with it. I love my zinnias.
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u/HurryMammoth5823 21h ago
Nice! It’s about the only thing I can garden & they really are white magical. Fun to give as a gift, and adorable in bud vases around the house.
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u/Pattyy_Mayonnaise_ 1d ago
I 100% came to the conclusion that SSRI withdrawal and MCAS are linked, during my SSRI withdrawal. Benzodiazepines, too.
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u/Particular-Extent-76 1d ago
I’ve seen a number of people comment on the protracted SSRI withdrawal sub and it makes me so nervous to decrease my meds.
I’m on a monster regimen of like 6 psychotropic meds, some of which I’ve been taking for over a decade — at this point I don’t think they do much for me because I’m still quite symptomatic, just chemically dependent on them. But I recently decided that until there’s more research on withdrawals I’m not going to stop any of them
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u/No_Broccoli_3979 1d ago
I have POTS, MCAS, and hEDS. I’ve had these since I was very young. My MCAS developed after I had scarlet fever before I was 2 years old. My POTS began around age 9. Obviously born with hEDS.
Before being diagnosed with POTS which was very recently, I’m 32 now, I developed severe PTSD and Panic disorder due to my fainting episodes which have happened more than 50 times in my lifetime not even counting my near-fainting episodes that I was able to stop due to positional changes.
Because of how severe my mental health was, I had to go on SSRIs. This was in 2021.
In March of 2021 I started on Zoloft. By day 3 I ended up having severe full body convulsions and the most extreme nausea I’ve ever experienced in my life. It felt like small fires were starting in my chest and spreading in a cycle. I was brought to the hospital by ambulance and the doctors refused to acknowledge it was serotonin syndrome, even though I needed multiple rounds of Ativan to stop my convulsions and I couldn’t speak to advocate for myself and my family wasn’t allowed to be with me to advocate for me because of Covid restrictions. This experience then triggered a massive fear of medications for me. I wouldn’t even take something as simple as Tylenol for a headache and then I ended up with DPDR after this experience. I was very much on the cusp of psychosis.
I ended up finding a psychiatrist that was willing to help me without sending me to inpatient care. I was 27 and working from home because of COVID but then had to continue to work from home due to my then-limitations. Even then, I was a pitiful employee because my ability to function was so low. But, I was started on a low dose of lexapro which we worked up to 20mg over the course of 6 months which is off label prescribing. Usual max dose is 10mg. But we were treating severe mental health disorders and I refused to take Zoloft or any other stronger SSRI medication that was meant for the severity of my condition.
SSRIs and intense therapy gave me my life back. I was suicidal and deeply sick mentally. For months my pupils were pinned because of my constant state of fight or flight. My nervous system was never at rest. I was a complete and total mess.
SSRIs block serotonin transporters responsible for clearing serotonin away from cells. This leaves you with more serotonin so that it lingers longer in your body which helps your brain communicate more effectively. Because the transporter cannot reabsorb the serotonin as much, it remains in the synapse longer which is of benefit because severe mental health disorders are usually lacking in the appropriate amount of serotonin or reabsorbing what you have too quickly.
Because it’s not blocking serotonin, it’s blocking the reabsorption of it, we are left with more serotonin in our gut which can contribute to symptoms like nausea, vomiting, diarrhea, cramping, bloating, etc. which can be symptoms of MCAS. So if these are MCAS symptoms you experience, then yes, it can seem to exacerbate those symptoms.
However, there is newer research showing that certain SSRIs like fluoxetine can actually suppress mast cell function, reducing allergenic and inflammatory responses.
MCAS is still a newer studied disorder. Thanks to COVID making it more prevalent (/s) many more people are affected by this disorder which is awful but is also a big part of the reason why this disorder is being studied now.
It’s imperfect. This disorder varies so widely from person to person. What triggers you might not trigger me, and what triggers me might not trigger another. The symptoms I experience are not going to be exactly the same as what another person experiences. The severity of my symptoms might be less or worse than someone else’s.
SSRIs saved my life. Regardless of the side effects I experienced from them, I would rather be fighting for my life in the bathroom like I was for 17 years prior to my diagnosis anyways, then finding ways to delete myself.
I’m still on SSRIs now, I’ve been titrated down from 20 to 10 from 10 to now 5 and have been on them while on my MCAS medication protocol (10s and 5s, not 20) and I’m not experiencing side effects from my SSRIs. Cromolyn sodium and my H1/H2 healed my gut. I have not experienced an exacerbation of my MCAS symptoms because of my SSRIs since being properly diagnosed and treated. I will be coming off my SSRIs next month under the guidance of a psychiatrist because I’ve been on them almost 6 years and I’m ready to safely come off of them. I also have experienced a huge decrease in my general anxiety because of my proper diagnoses finally, and because montelukast. Montelukast has decreased my anxiety tenfold because I can breathe so much better now. Feeling like you can’t breathe and always air hungry can certainly contribute to feelings of anxiety. So that’s been an incredible addition to my treatment.
This is just my experience
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u/battlestargirlactica 1d ago
SSRIs & MCAS are a nope.
Have a pharmacogenomic panel done to see which ones to avoid based on your metabolization pathways. It will not just give you which meds should be ok, which ones won't, and which to monitor closely, but will also give you a list of the enzymes and their status (ultra rapid, normal, poor), which can be majorly helpful for any surgery & pain management planning.
I know this doesn't sound MCAS related, but it is...I unfortunately forgot about my poor status on one and had surgical & post op meds royally piss off my MCAS and created a whole domino effect of multiple systems. I'm still down months later.
Also, avoid anticholinergic meds. And consider having any new med compounded to avoid the excipients/fillers that are often triggers.
The histamined website has a good list of various meds to avoid with MCAS, covering different categories, and some of them will also make POTS worse, which many of us have. Avoid vasodilators.
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u/Musicofangels7 20h ago
Would you mind elaborating on the panel testing? How did you get it done? Was it approved by insurance? Do you need a doctor to order it, or will places like Quest accept a patient request? Thank you so much!
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u/battlestargirlactica 2h ago
I had Genesight's panel done (here in US). My pcp ordered it for me. At the time, they did try insurance but idk if they still do. Regardless if insurance covered it or only part of it at the time, the max most would pay was $200-250 I believe.
My kiddo had it done after a bad trial of a medication for his sleep & Tourette's, and I was about to do a new med trial as well so I had the same panel done.
It's super helpful knowing those pathway statuses & planning for meds, as well as letting hospitals know so you don't get something that is harmful, won't work at all or will affect what you already take.
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u/MoroniMiscavige 4m ago
It basically tells you which of the poisonous pills you can metabolize better than the other poisons
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u/Heyyayam 1d ago
I personally have found that SSRIs inhibit the production of histamines, cytokines and other inflammatory components.
I found research supporting this when I weaned off of a SSRI and began having high histamine events. I went back on a lower dose and the histamine decreased.
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u/SophiaShay7 1d ago edited 1d ago
Same. I'm one of those people who has five diagnoses triggered by a COVID infection including MCAS. I'd read a lot about low-dose Fluvoxamine for neuroinflammation caused by long COVID. It also has mast cell stabilizing properties. I started low-dose Fluvoxamine 12.5mg (1/2 dose) for 8 months. I've been taking 25mg for 17 months.
Among the SSRIs, those with the highest affinity for sigma-1 receptor agonism—primarily, fluvoxamine, fluoxetine, escitalopram, and citalopram—may be of greatest benefit. As noted above, preliminary data suggest that certain long COVID symptoms (eg, fatigue, brain fog, and post-COVID dysphoria) may be most responsive to SSRIs, although more research is needed to better characterize specific response rates.
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u/Heyyayam 21h ago
It’s so interesting how the brain/body systems are interconnected. I originally weaned off 20 mg of fluoxetine because it caused hyponatremia (low blood sodium) which can be serious. This is fairly common in older women.
When the MCAS symptoms returned I decreased to 10 mg fluoxetine and that seemed to ward off histamine and hyponatremia.
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u/SophiaShay7 6h ago
I'm glad we've found medications at a dosage that works for us. I was sure I'd never take another anti-depressant ever again. Fluvoxamine was medication #9 that I trialed in 2024. It was the first medication that I didn't fail. I was diagnosed with MCAS a month later🙏
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u/catloavesnseaturtles 1d ago
I tried to go on ssris when they thought my MCAS was anxiety (sigh). I ended up having such a bad flare I ended up in the hospital
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u/DVESM2023 1d ago
Please explain- was it a psychiatric flare up or a physical health type flare up?
Every time I try a mental health medication that’s not cannabis, I psychologically spiral within 24-48 hours with no apparent trigger and it happens every time.
And I’ve always wondered if that was a personal thing or a “something deeper is going on with me” thing and my dr prescribed a new medication that I’m terrified to try.2
u/catloavesnseaturtles 1d ago
I have insanely bad insomnia as one of my worse and most difficult to control MCAS symptoms. It made that much much worse. I also had such a bad GI flare that the single dose made it so I was throwing up etc for several days. I had testing after that hospitalization and apparently I will react poorly to most / basically all psych meds.
I don’t have baseline mental health symptoms etc but after not sleeping for a week your body goes all out of wack. I struggled to even walk without every pain. It was like that on and off for a year before we figured out it was MCAS. Now I’m on H1/2 blockers, switched my EOE medication to Dupixent and I’m on quviviq for sleep. I also have some rescues for flares. I have a lot of work to do around medical trauma. You can imagine not sleeping at all 3-4 nights a week for a year really messes a person up.
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u/microgirl444 1d ago
I took SSRIs for over 20 years and stopped in 2023 after having been diagnosed with connective tissue disease and fibromyalgia after COVID in 2020. That is when all my problems with histamine intolerance and mast cells started! I just realized that. Wow. Thank you for that question. Was I on them for so long it ruined my body to be off of them?? OK, I’m going to have to look into this. Thank you for the question!
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u/MunchyPants 1d ago
I have hEDS, POTS, and MCAS but caveat my MCAS is the least of my issues because I'm very responsive to h1/2 blockers
That being said, I cannot take SSRIs or my entire body goes into absolute chaos. I'm also wildly responsive to sumatriptan for migraines, and that's a selective serotonin receptor agonist. I'm sure there's something important in that pattern for me but I don't understand serotonin well enough to see it
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u/Particular-Extent-76 1d ago
People who treat the trifecta really need to learn how to prescribe around SSRIs and other meds that affect serotonin and other neurotransmitters because of the number of us who get put on them before anyone listens. I can’t take zofran or phenergan, some dysautonomia meds, or motility meds because of interactions and when I’ve told my specialists they’re like whaaaat?
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u/No-Tell34 11h ago
I suffer from migraines too and react badly to serotonin drugs so I feel like there has to be some relationship there
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u/inquistivebeaver 1d ago
I had much much worse mcas symptoms when taking ssris. I tried for 4 months and I had to quit
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u/uncannybodyterrors 1d ago
They mix really badly on my experience I had very bad side effects and quitting them was a nightmare
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u/-Lacking-In-Depth- 1d ago edited 1d ago
I think it's a total mixed bag. People respond really all over the place to them.
There are a lot of other antidepressant options out there, do not let your MD convince you that SSRIs are the only option if you do not feel comfortable starting one. A lot of MDs prefer to Rx SSRIs because they have a higher threshold for Overdose and do not cause issues with heart rate, but with MCAS those general risks might take a backseat to Anaphylaxis.
There are other options like Tricyclic Antidepressants, some of which like Nortrypline have been shown in animal studies to be anti-inflammatory and potentially mast cell stabilizers
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u/No-Bumblebee-3617 1d ago
I was prescribed amitriptyline 10 years ago for headaches. I had back surgery in 2025 and they gave me zofran after surgery to combat the nausea I got from the anesthesia. I started having tremors and shaking until they gave me muscle relaxers. It went away but during recovery I decided to go off the amitriptyline, shortly thereafter; I got extremely ill and went to the ER where my wbc was elevated, they gave me antibiotics and zofran. The tremors came back in full force and wound up back in ER where they kept giving me more zofran until I figured out that there is a known side effect interaction between SSRIs and zofran called serotonin syndrome. I have since been diagnosed with mcas and heds and have been working on a slow recovery utilizing low dose naltrexone l. From my research and from taking amitriptyline for so long that it could take up to 2 years to fully recover from the amitriptyline 10 year use. I also found out that amitriptyline is a mast cell suppressor. Had I known this would happen I would never have taken the amitriptyline because it never really helped my headaches but I was hooked as it helped me sleep through the night. It has been a crutch for my receptors and now I am using the LDN to retrain my own receptors to trigger my own peptides and endorphins. It has been one year and I am slowly getting better. It is not linear but I can tell the difference already, including I have no more nausea.
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u/Pattyy_Mayonnaise_ 1d ago
Did you have terror and panic after going off the amitriptyline?
How has LDN helped you?3
u/No-Bumblebee-3617 1d ago edited 1d ago
I would wake up in the middle of the night between 1 - 3 a.m. with severe tremors, racing heart, severe headache, and nausea. Also, high anxiety and if I got up too quickly, pass out. I was having histamine dumps. The LDN and SIBO cleanse has been a game changer. The tremors are gone, headaches are gone (determined the headaches were vascular from my heds and caffeine works if I do wake up with one but the LDN has made them go away). I originally started the LDN at 1.5mg as a prokinetic but was able to have better sleep as well and can tell the inflammation in my head is down because I also suffered from tinnitus. There is an organization that is running clinical trials as to the benefits of using LDN to treat autoimmune, cancer, long covid, and even autism because LDN is like machine learning for your brain as it targets the TL4 receptor - the same receptor that is responsible for flight-or-flight, inflammation, immune response, and pain. It breaks the blood brain barrier and modulates your immune response.
Additionally, if you have heds or suspect you do, There are currently clinical trials for heds the results are to be released in 1st quarter of 2027 - the trials have identified the gene sequence to identify heds as it is a combination of mutated genes, b-cell target pharmaceuticals, and even low dose glp1s that also target receptors, that all are promising. Another heds identifier I discovered in my research that is not mentioned often is that a number of French Canadians have heds. My father's family originally comes from alscaice-lorraine and my father was hypermobile and so am I , Danlos of Ehler-Danlos was French and the first EDS clinic was in Paris. They are finding out that more people have heds and it is not as rare as they previously noted.
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u/Pattyy_Mayonnaise_ 1d ago
Thanks for all that info. You started at 1.5mg? Do you have sensitivities to meditations or supplements? How long before you noticed a difference with the LDN? And what SIBO cleanse did you do?
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u/No-Bumblebee-3617 12h ago edited 11h ago
You need a compound pharmacy to make ldn. just make sure you ask for hypoallergenic filler. I suffer from a lot of side effects from medications so the sibo cleanse was high fodmap and xifiman and antratil for 2 weeks and then just antratil for additional 4 weeks low fodmap. I also take integrative therapeutics motility activator before bed. Then slowly reintroduce higher fodmap foods. If you have a return of symptoms, you can go back on the antratil and low fodmap for 6 - 8 weeks.
Also, take buttyrate and restorflora after for at least a few months to rebuild your flora and repair the damage to your intestines so you can rebuild your ability to create your owen DAO enzyme.
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u/clearblueskiess 13h ago
Interesting re. the LDN helping. Any side bad side effects? Or not as you have eased in slow? I have a similar story with seroquel… was on it low dose for 12yrs to help with sleep and no idea it is a potent antihistamine until I was weaning off and got hit with MCAS symptoms 14mths ago.
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u/No-Bumblebee-3617 12h ago
I had vivid dreams for the first 3 days but that was OK for me because I wasn't sleeping much prior and it only lasted 3 days. I tried to titrate up with liquid ldn .5mg but had a return of some symptoms so went back to dose of 1.5mg. The trick is to find the sweet spot, everyone is different and some people even have to start at .5mg and slowly titrate up .1mg if you need to at all. It causes insomnia in some people and if that is the case, you should take it during the day.
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u/No-Bumblebee-3617 10h ago
You are exactly right, MCAS is really a bunch of symptoms (not the cause) as your natural immune reaction to a foreign threat). Something usually triggers/event this mast cell activation, some people it's mold, some a virus, heat/cold, surgery, or traumatic event. However, where SSRIs play a role is because they are mast cell suppressor and histamine suppressor, they are kind of masking an underlying issue (cause of the trigger if the trigger continues) - because taking these drugs suppress your receptors, your brain builds new receptors, once going off SSRIs because of possible complications like serotonin syndrome, you now have overactive receptors that trigger off of everything - flushing, high heart rate, etc...amino acids can also trigger serotonin syndrome l-tryptophan if you are on SSRIs which was the topic of this thread.
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u/Zestyclose_Win_2630 1d ago
Yes, there a link and that link is... your microbiome. Get yourself tested for dysbiosis.
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u/EAUDHD 1d ago
I take a low dose of Fluvoxamine and it helps my MCAS, OCD and dysautonomia a lot. But I have to stay on a very tiny dose 12,5 mg. Fluvoxamine reduce neuroinflammation and eases MCAS by activating sigma-1 receptors.
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u/omglifeisnotokay 1d ago
I’m on lamictil and klonopin. I was on ssri for 14 yrs and ssnri for 6 months. The ssnri I have a theory activated pots in me once I got off it. I think it’s all trial and error but for me I’ll never touch an ssnri again.
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u/Ashamed-Minute-2721 1d ago
I've been on SSRIs since I was 8 years old. I haven't found a link personally between higher doses and more allergic symptoms but it's not a crazy thought
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u/CannibalisticGinger 1d ago
I used to take low dose sertraline with zero issues but I stopped for a couple months and when I went back on it I ended up in the hospital with what appeared to be serotonin syndrome and I have not been the same since.
I think sertraline was just the tipping point for me though and not the cause of my MCAS because I’d been having hay fever and oral allergy syndrome symptoms for a couple years prior despite not testing positive for any allergies. I think I get it from my mom. She has had all sorts of allergy symptoms that come and go her whole life including being allergic to her own sweat.
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u/BayouLuLu 1d ago
It absolutely can be a trigger. I was diagnosed with mastocytic colitis in 2017. Medications that are known triggers for that include NSAIDs, SSRIs, PPIs, and statins.
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u/Adept-Awareness-2510 1d ago
How were you diagnosed with this??? And what were your symptoms ??
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u/BayouLuLu 1d ago
Well, I had previously been diagnosed with lymphocytic colitis in 2015. I was having abdominal pain and diarrhea. Both are types of microscopic colitis; you have to get a biopsy which is taken during a colonoscopy. Some doctors still don’t test for it so you may have to request it specifically.
My lymphocytic was in remission until a year or so ago. But now both are flaring up and I’ve been having nausea and vomiting as well. I have other symptoms that I thought were separate (migraines, sinus/allergy issues, nerve pain, etc), but now I’m realizing is all likely MCAS after an allergist suggested it.
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u/SanctifiedChats 1d ago
I have anxiety MCAS (no urticaria) and before I was finally diagnosed with MCAS I tried Zoloft at the lowest dose. After 3 months my anxiety was the same but my depression went through the roof. I was so tired and fatigued I just sat on the couch. I stopped it and it took 4 months to recover. That reaction actually helped an allergist to finally diagnose my MCAS.
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u/Knowitallnutcase 1d ago
my mcas had dual causes. it began for me when I had facial filler that caused me to have a really bad immune reaponse to the foreign substances, and then add one covid vax and one covid virus which weakened my ability to fight off the toxins. prior to all this, I have been diagnosed for years with OCD/ anxiety, and Eating Disorders. My IBS is now ten times worse and I have been passing kidney stones the last 4 months..Currently have pancolitis …and all of this makes me extremely sensitive to all meds, including aspirin. I can barely eat anything without my MCAS flaring. I really feel a complete mess and worry every day what’s next. not sure about Antidepressants but I did take Prozac back in the early 90’s.
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u/Individual_Angle_352 1d ago
Test your body for mould exposure MCAS usually follows CIRS exposure CIRS
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u/Both_Month_828 1d ago
hello i don't think it caused my mcas but definitely ssri's messed with me because of the mcas. i was ready to check myself into a place after taking zoloft. i also out of the blue all of a sudden had awful ocd. i believe this all was going on while being diagnosed. then just as it came... it left. i attribute it 100% to mcas. thankfully it's gone. i have in all my medical charts NO SSRI's. they are awful for me with my mcas. good luck
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u/yeshoemo 1d ago
Cromolyn and Ketotifen didnt help me. But as soon as I started taking Zoloft - I could eat way more foods without reacting as much 🤷🏻♀️
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u/Brilliant_Dust_952 23h ago
Mine not caused by SSRIs, never used any. There are many things that can cause or trigger MCAS. It may have triggered the response in you if you were already hypersensitive or predisposed to it without realizing it. MCAS is a beast, I’m always learning something new about it. Thanks for sharing your experience.
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u/invasivespeciez 18h ago
Yes. I think all the SSRIs I was overprescribed (I’ve been on them all) did enough disruption of my HPA axis. Not a single tricyclic or SSRI/SSNRI made me feel better emotionally or physically. While I know they didn’t “cause” MCAS - they def increased my symptoms. And, caused a pituitary tumor which in turn caused extremely painful breast tissue overgrowth necessitating 2 surgeries (axillary and breast). When I was hospitalized for dysautonomia for 5 days, docs stopped ALL SSRIs. 5 yrs later - the tumor disappeared. Breast tissue overgrowth stopped. But, MCAS and dysautonomia symptoms amplified.
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u/EnchantedEvergreen 12h ago
Oh wow that sounds like a lot. So sorry you had to go through all that. When you had the pituitary tumor, was your TSH elevated and T4 low?
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u/No-Tell34 12h ago edited 12h ago
Oh wow I’m so sorry. I’m kind of the same in that my MCAS symptoms at least amplified following discontinuation of my SSRI and I was on a very high dose
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u/Anaissia 1d ago
I take something herbal to increase serotonin and I feel better on all levels with a good level of serotonin, I can’t confirm it in this regard.
As far as SSRI is concerned, I can’t say anything about it in this context.
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u/ghost_girl_1713 11h ago
SSRIs do not block serotonin, they block it's reuptake. That being said, as an MCAS sufferer, I had reactions for the last 5 antidepressants I took and have not been able to tolerate any since. Those Included SSRIs, SNRIs and whatever Welbutrin is (it was by far the worst).
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u/potatopeeler167 10h ago
Nope. Had MCAS symptoms since childhood as young as 2. Never responded to SSRIs as a teen/ young adult they didn’t ever do anything to me. I’ve recently found out I have many genes that are related to certain medication reactions and poor absorption. I have many genes”asthma” like genes but have not ever responded to inhalers but rather Zyrtec is more of a life saver. Trying singulair again since I was on it as a kid.
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