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#mast cell activation disorder
kirby-the-gorb · 28 days
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we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!
(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)
all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.
for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?
I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.
after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.
okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)
being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)
anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍
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wheelie-sick · 1 month
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What is Idiopathic Mast Cell Activation Syndrome?
Idiopathic Mast cell activation syndrome (MCAS) is one of several mast cell disorders. MCAS occurs when there are a normal number of mast cells in a person's body but they over-release mast cell mediators causing random allergic reactions in multiple systems of the body. MCAS is incredibly common being present in an estimated 17% of the population.
Symptoms
MCAS symptoms are incredibly varied and always occur in multiple systems of the body. Anaphylaxis is common.
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[ID: A graphic labeled "Some common symptoms of Mast Cell Disease" A graphic of a person standing in the center with multiple organs visible is shown. Around the person are lines pointing to specific areas of the body labeled with the body system and symptoms. Clockwise these read "Neurological headache, brain fog, cognitive dysfunction, anxiety, depression Cutaneous (Skin) flushing of the face/neck/chest, hives, skin rashes, itching with or without rash Cardiovascular light-heartedness, syncope (fainting), rapid heart rate, chest pain, low blood pressure, high blood pressure at the start of a reaction, blood pressure instability Gynecological uterine cramps, bleeding Urinary bladder irritability, frequent voiding Systemic and/or organ specific Anaphylaxis angioedema (swelling) Skeletal bone/muscle pain, osteopenia, osteoporosis Gastrointestinal diarrhea, nausea, vomiting, abdominal pain, bloating, gastroesophageal reflux disease (GERD) Ear/Nose/Throat/Respiratory nasal itching and congestion, throat itching and swelling, wheezing, shortness of breath and more" In the bottom left corner "Symptoms can be sudden and unpredictable in onset learn more at tmsforacure.org"]
MCAS symptoms are specifically not allergies. the reactions may look like allergies but the two are not the same and MCAS is not a condition meaning "many allergies" While MCAS can have some consistent triggers one of the defining features of the disease is that reactions are random and happen unpredictably.
Anaphylactic shock is not a requirement for diagnosis.
Diagnosis
MCAS is diagnosed by an immunologist. It is in part a diagnosis of exclusion and requires ruling out both allergies and systemic mastocytosis as well as other conditions such as certain types of tumors.
Diagnostic criteria for MCAS is debated. Some immunologists follow the symptom-based diagnosis approach in which case the diagnostic criteria are:
Recurring and severe anaphylactic-like episodes that involve more than one organ system
and
Positive response to mast cell stabilizing or mediator medications anaphylaxis-type symptoms
Others follow diagnostic criteria based on laboratory findings. In this case the diagnostic criteria are:
Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:
Skin: urticaria, angioedema, flushing
Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping
Cardiovascular: hypotensive syncope or near syncope, tachycardia
Respiratory: wheezing
Naso-ocular: conjunctival injection, pruritus, nasal stuffiness
and
A decrease in the frequency or severity; or resolution of symptoms with anti-mediator therapy: H1 and H2 histamine receptor antagonists, anti-leukotriene medications (cysLT receptor blockers or 5-LO inhibitor), or mast cell stabilizers (cromolyn sodium)
and
Evidence of an elevation in a validated urinary or serum marker of mast cell activation: Documentation of elevation of the marker above the patient’s baseline during a symptomatic period on at least two occasions; or if baseline tryptase levels are persistently >15ng, documentation of elevation of the tryptase above baseline on one occasion. Total serum tryptase is recommended as the markers of choice; less specific (also from basophils) 24 hour urine histamine metabolites, or 11-beta-prostaglandin F2.
and
Primary (clonal) and secondary disorders of mast cell activation ruled out.
These are not all proposed diagnostic criteria as the subject is heavily debated. Generally, a laboratory-confirmed MCAS diagnosis is considered more legitimate.
Treatment
MCAS is a very treatable condition. Generally treatment follows a path from antihistamines -> mast cell mediators -> biologics.
Epipens are given to MCAS patients with a history of anaphylaxis.
Antihistamines are divided into 2 categories: H1 antagonists and H2 antagonists. These categories are determined based on the histamine receptor each one targets.
H1 antagonists mostly deal with systemic and cutaneous symptoms. H1 antagonists are also further divided into first and second generation antihistamines. first generation antihistamines include diphenhydramine (Benadryl) and Hydroxyzine. These tend to cause drowsiness. With second generation H1 antagonists cause fewer side effects and include drugs like loratadine (Claritin) and cetirizine (Zyrtec)
H2 antagonists primarily affect the gastrointestinal tract and include medications like famotidine (pepcid)
Typically when treating MCAS a person will be put on both a second generation H1 antagonist and an H2 antagonist.
When antihistamines do not treat symptoms well enough the next step is a mast cell mediator. The most common mast cell mediator is cromolyn sodium which is available by prescription only. (this is technically available OTC but it is at 1/50th the dose used for MCAS) Mast cell mediators work by preventing the degranulation of mast cells in the first place.
When both antihistamines and mast cell mediators are insufficient someone with MCAS might be prescribed a biologic such as Xolair to treat their remaining symptoms.
Sources:
American Academy of Allergy, Asthma, and Immunology
Mast Cell Hope
Mast Cell Activation Syndrome: Proposed Diagnostic Criteria
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ehlers-danloscircus · 8 months
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Does this mean we can finally get rid of soy in literally everything
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twisted-rat-king · 2 years
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dear people who think "how could you even function if you *actually* had all that" somehow disproves a person's everyday struggles, kindly shut the fuck up <3
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ablednt · 11 months
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I know the same things don't work for everyone but does anyone have a H1 and H2 antihistamine combo I can get over the counter to suggest? Currently not on either (I've tried a lot of h1 antihistamines on their own but this was long before I knew about MCAS) and the daily agonies are a solid -200 out of 10
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ohaicarolina · 7 months
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I’ve lost track of how many ambulance rides I’ve taken.
I’ve probably given over 100 epipens by now.
My thighs are permanently bruised.
I’ve stabbed my thighs with trembling hands as my eyes are going dark, hoping the air will come back and this won’t be the final time.
I found out I get steroid psychosis, so they can no longer be part of treatment, but not until after they made me gain so much weight and I lost several days of memories.
I’m scared of every food and every scent because previous safe ones have flipped to danger.
I miss peanut butter.
Malted barley flour is in so many things.
I’m terrified that I’ll develop an allergy to Ruby.
The summer heat has closed my throat too many times.
Pictures from 5 years ago I was so genuinely happy.
This has taken over my life.
I hate this.
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daydweam · 1 year
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I wanted to share more about my disability! This is what a bloat looks like for someone with EDS, POTS and MCAS! I experience this many times a week! This fluctuation is hell for me and many others, especially because of the weight it puts onto the back. You can clearly see I literally look pregnant. I am not even puffing out my stomach which is the scary part. On the right is what my stomach looks like normally. Just wanted to post this to educate, and also for those who know this pain. You are not alone!
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fraye-complex · 3 months
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This is a very off topic post for this blog, but I'm so tired of living with myself.
I don't hate myself, I don't truly want to leave the plane of existence I call home, but I do things sometimes that affect my quality of life.
I have insomnia, I'm trying to find something other than weed to help me sleep, and today I bought a "Nighty Night Extra" tea that looked promising.
I went out to the kitchen to look for it, I knew I hadn't put it away, but I couldn't find it anywhere.
I finally convinced myself to triple check a cupboard; I did find my tea, the box was really smashed and someone had opened it and stuck what I suspect had been a loose tea bag into it.
This Should Have Been A Sign
I made my tea, drank most of it, then went out to grab a couple bottles of water before bed. When I get to the kitchen, I almost immediately find the box I had actually purchased today, sitting pristine as ever on my stove.
I begin to feel dread and frustration creeping in as I double check the box I'd used, confirming that they were both the exact same tea.
Bad News.
The open box is nearly full, I think it's only missing my bag from tonight and the one from when I first opened it.
One of Three Reasons For This:
Taste/Texture Bad. This is the preferred option. Unfortunately the tea was good.
It Hurt Me Physically. I'm very delicate, a lot of things can make my body hurt, inside and out, in ways I do not enjoy. This is the second best option. I suspect this is not the case here, because of reason 3 :
I Was Allergic To It. I started feeling like I ate crab. Then I remembered that means Bad Allergies Are Happening.
To be clear: I was allergic. I have taken benadryl and am otherwise caring for what has become a common occurrence for me.
Between trying new things I shouldn't have, cross contamination at restaurants; and slowly making a reaction worse every time it happens, but "that's just how some foods are". They Are Not Actually! Sometimes I learn that the hard way with these foods, because I'll be enjoying my snack and suddenly my tongue and throat are itchy and breathing feels weird.
Hate that my Aggressive Idiot Immune System won't let me have nice things like mangos or salmon or tea or certain store brands of sour gummy worms.
Also it makes me itchy. I do not care for that.
(I am working on more Horny Subby Bird Posts, I am just currently Tired and Hungry because my body will not let me perform the maintenance to fix those problems and everyone else is sleeping so I cannot complain to them. My brain feels like pudding and I'm just so exhausted.)
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thenarrativefoil · 1 year
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Meds posting time!
Best probiotic I've found for histamine intolerance & mast cell activation syndrome:
its got goofy marketing but the probiotic strains WORK and don't produce histamine. I've used it for 2 months now & it fucking works (holly lugia or whatever)
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s0fter-sin · 4 months
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was anyone going to tell me your eyes aren’t supposed to burn when you cry and can be a sign of eds or was i supposed to see a tiktok of it myself
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geeses · 5 months
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Hello, I had a question about MCAS and the process for a dx, I recently had a bunch of allergy testing done for a weird reaction to items containing salicylates and all 24 tests came back negative. My allergist said it's odd and suggested (?? recommended?? Idk the correct usage here.) I get evaluated for MCAS. I've been doing research and trying to find an average dx time, but I'm realizing that varies a lot. I've also tried to find what to expect from the dr appt(s) and that seems difficult to find. Do you have any advice? Is there anything I should expect? I'm sorry this is so long winded.
Hey there! I am so sorry you're struggling with this. The process of diagnosing MCAS is very frustrating. First of all, no single test is definitive. The diagnosis of this condition is the doctor's speculation in the end. There is no test to say YES you have this or NO you don't. However, with a collection of symptoms, a clinical exam, and accompanying test(s), a diagnosis can be made by an allergist.
The tests usually ordered are a 24-48 hour urine collection and/or a blood test within 4 hours of a reaction. The lab tests can only hint at a greater likelihood of MCAS. A negative test result does not necessarily indicate an absence of MCAS. Be warned that most allergists do not know how to treat this, as it is so very individual (and dynamic). It is still worth it to get a diagnosis in order to rule out any other issues, and so you can be prescribed an epi pen, and any other medications that might help manage flare ups. I hope this helped shine a little insight on the topic!
<3 good luck, and have some chamomile tea (literally has been the most potent medicine i have used to manage my MCAS)
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lost-spoons · 6 months
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Pretty much everything bothers my skin causing it to react negative most of the times, usually by drying out and flaking off as large-ish pieces of dead skin like a lizard sheding it's skin.
When I get my eyebrows waxed or threaded or tweased, my skin creates a bunch of raised areas similar to scabs, like the ones that appear from picked at a pimple. It's incredibly itchy and dry, but putting anything on it aggravates it, so I just take Benadryl and leave it alone, to the best of my abilities.
That's not the main thing for this post though- more so background filler information. The real/important part about this post is to sort of rant about the bizarre occurance of being allergic to my own dead skin.
Those flakes of dried out skin that occasionally appear? Apparently, if the flakes fall off by themselves or with assistance in the form of face scrubs, I become allergic to it. I have no idea how or why that happens- but it is something that baffles me.
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wheelie-sick · 3 months
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right now everything touching me burns and I'm so tired I'm doing everything I can I'm gonna restart antihistamines in the meantime and see if that helps but it fucking sucks that my MCAS meds just aren't working well enough anymore
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emilemily · 8 months
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I’m doing good. I’m working remotely for an amazing company, I have a fantastic doctor that is ordering every test needed to find out what’s wrong with me. My confidence is back.
I was diagnosed with POTS, Mast Cell Activation Syndrome, and Ehlers Danlos Syndrome pending figuring out which subtype it is.
My doctor ordered another ANA panel and my levels have quadrupled, so she’s beginning to think I don’t have POTS and instead have something that has the symptoms of it and mast cell.
So basically my diagnosis is questionable after further testing and we have more tests pending to figure it all out.
Lambert-Eaton syndrome is something she’s exploring because I match all the symptoms and my blood work results are leading her to it. If that’s indeed what I have, then it’s likely I have small cell lung cancer. I’d rather that not be the route my life takes, so I’m choosing to just think of it as a potential situation and not reality.
The 5 year survival rate of SCLC is 8%, which is a weird thought.
I won’t know anything until the test results come back, though, so I’m trying not to fret too much about it. I feel sorta like I’m in an episode of House MD.
I’m severely vitamin d deficient so we’re addressing that now. Iron deficient as well which we’re also treating.
All we can do is work on what we can and hope for the best.
Strangely, I’ve never felt better mentally than I do right now.
Life happens to us all. Nobody is safe from it. But I have a great remote job, two beautiful dogs, a roof over my head, food to eat, and amazing friends + some family.
I’m good for now.
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twisted-rat-king · 4 months
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why the fuck is my immunologist allowed to just... not write a prescription for a refill of my mast cell stabilizers without warning. I have MCAS. I am allergic to literally everything. OTC antihistamines hardly put a dent in my allergies, even if i quadruple the doses (which is generally the highest you can safely go).
i could literally die without these meds.
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actuallytybee · 1 year
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Just MCAS things
✨️ Trying to use a whole bottle of body wash before my body gives me an allergic reaction to it ✨️
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