Mast Cell Activation

Hi, good morning all. I have MCAS , post long Covid or vaccine injury... regardless I have it. It's really troubling me right now. My nose is a faucet, my body hurts, my stomach hurts - I feel like I have a flu. So, what to do...I came here for support, offer support, info, Intel lol.
I am receiving IVIG monthly treatments and that was really helping and felt like it went away for a while, but I am as of late feeling like I have had long Covid for the 3rd time and big MCAS. I do have epinephrine shots, but all they do is open my chest, dry my nose, make me sleepy lol. Crazy writing about it. I don't know how I get by, good sense of humor 😜 I guess. Nothing really has worked well for me and I am just so sick and tired of spending my days in doctor's offices. I had to go to my primary, urgent care, ER, dermatologist before finally getting diagnosed with onset of a strange eczema that developed into infected impetigo. Ughh, I just want to put my head in my pillow and scream and cry. Because, just seems ridiculous sometimes. And to all of those Dr's previous to the dermatologist who put me on Doxycycline, I explained that I have discitis with gas in my spine from all my new 4 autoimmune diseases, inflammation. I've already had an infection and almost died etc...crickets, gaslighting. sorry, not very supportive today. Honestly, I'm exhausted and moving and will be living alone so I can be sick and do me.

I pray you get the proper medical care very soon🙏🏻 hang in there!

What’s the fb page called?

Can you tell me where you ended up getting treated in MN? I can’t find anyone

I don't do social media. My husband and I shut down all of that before we were married. There seemed to be no shortage of freaks and stalkers on FB for one reason only. I guess I don't need to say what that is. Anyway, I'm replying here instead of starting a new thread. I just need to vent and hope to connect with others sharing my struggles. I have MCAS, H-EDS, POTS, laryngospasm, insomnia, IBS, migraines, salicylate allergy, chemical intolerance, intensely painful and chronic back/rhomboid spasms (supposedly from a pinched nerve), however they only get horrific after I eat ANYTHING. I currently have zero foods that I don't react to with muscle spasms and shortness of breath. I take 6mg daily of Ketotifen, Xyzal and Benadryl twice daily. I can no longer take natural remedies like Quercetin and Luteolin because I also have a severe salicylate allergy. I have anaphylaxis routinely, despite living on about half a dozen or so vegetables, three meats and no fruits. Xolair helped a very little bit but wiped me out for a week with unbearable fatigue. I couldn't get out of bed for a week. I have begun reacting to every lotion, body or cooking oil, deodorant and basically anything with chemicals in it. I have no life, live in near constant and severe pain and spend most of my time in bed. I don't have the milder issues like diarrhea, runny nose, swollen or itchy eyes or rashes very often. I have more life threatening, systemic problems including anaphylactoid episodes and anaphylaxis. I go from zero to bottoming out BP and shortness of breath, quickly followed by my throat closing. Often I manage by quickly chewing up a few Benadryl tablets and using my inhaler but anaphylaxis does happen too. I have an appointment next month with a doctor nearby who supposedly is experienced with MCAS patients. I was traveling hours to see one until I became to sick to do so. I've experienced gas lighting and doctors who get tired of dealing with my "complexities." How can something that affects so many have so few specialists and no FDA approved treatments? Everything has to be compounded and it seems like most PCP's know so very little about MCAS. I shudder to think of what would happen if I needed emergency care after an accident and couldn't speak for myself. I am so sick and so frustrated.

Thank you for reading this.

Hi, I have a form of MCAD - like you muscle spasms, gastric issues, headaches etc. I am also allergic to aspirin but was desensitized enough to get off of plavix and take .81 (low dose) aspirin once a day. We have tried H1, H2, singular etc and all of them made things worse - so my question to the dr was, if those antihistamines are supposed to be helping me why are they making me worse. No answer. As it turns out, I am intolerant of many many drugs/ or whatever they use for fuller. BTW I am surprised your not taking cromolyn - this helps especially with gastrointestinal issues. So to keep this short, in reading up on antihistamines - they can adversely affect your muscles and you are taking a lot of them, just something to think about. They affected me so badly and i never thought an antihistamine was capable of making it impossible to walk up stairs, rise from a chair or making driving scarey...So i gave up my car (standard drive) because my legs and arms would stiffen or go into spasms. I stopped taking the antihistamine and the muscles started to work again. But Alas, my car is gone. Look into the cromolyn for your digestive issues it will calm the mast cells and hopefully after a couple weeks you will feel a bit better. It is a very old medicine - but its number one in the MC prescriptions! I am in my 70's and have had these issues for a long time with very little help....if something isnt working for you, then its the wrong path and over medicating isnt necessarily the answer. It takes time to eliminate exposures from different sources, the one thing i think is very important is to eat unprocessed foods and read read read labels - if you cant say some of ingredients - dont buy the products. One last thought...I was taking zyrtec *cetrizine) and it wreaked havoc on my muscles, my doctor ordered from a compounding drug company levocetrizine without any petroleum filler and believe it or not it worked. I take 5mg a day, we bumped it to 10mg and voila even without the petroleum the muscle issue came back. So I went back to the .5mg. I use childrens benadryl occasionally when the reactions are painful or make me vomit. However, sometimes more isnt better... It is hard to work with all of these issues, and we all have different manifestations - many that overlap other health issues so I changed my "wanting a real diagnosis" (no doctor has done that yet) to concentrating on how to keep the pain away and what can I do to better enjoy the rest of my life. Taking it one at time, at a relaxed state, wear a bracelet with my basic issues listed and like you a bit scared that some idiot in an emergency situation will give me something and make me worse. Think most of us think this and thats what scares us the most. I would like a follow up from you in the near future.

Have any of you been tested for Alpha Gal? Alpha Gal and MCAS are very similar. The exception being Alpha Gal is a whole lot easier to deal with, with simple dietary modifications. It's a simple blood test and I am befuddled why Dr's are not checking everyone for this because it's a simple blood test and in 2-5 days you get your results. They need to start there before subjecting patients to expensive, invasive and diagnosis with little or no treatments or curative value.

I developed something similar after my first blood donation for polycythemia. It started suddenly while exercising and when my heart rate increased. Then I noticed it when I was in the sun or got remotely hot or humid. I also noticed it during being frustrated. I stopped working out and tried to keep as cool as I can in FL....

Most doctors didn't know, but I agree with the Niacin flush like feeling. I had to do my own research as my general, hemo and Mayo hemo didn't know or have answers.

It seems like there is some mast cell activation factors. I also have studied cholinergic urticaria. I suppose this can accompany some blood disorders. There are diets for it that some people swear by (turkey, broccoli, sweet potatoes, white rice, bananas, berries - very limited though). I've found that using a sauna a few times a week (it hurts the first few times), slowly makes it fade away. Now, I can normally go outside in the sun or exercise and not get too much stinging pain.

Hi, I had itchy widespread rashes with hives and welts on my torso, legs, arms, feet--basically everywhere but my neck and face for awhile, possibly a year. I thought it was a reaction to a bath product but it wasn't. Eventually I went to the PCP who referred me to an allergist. He said I had "mast cell activation" probably due to NSAID use, but he didn't diagnose it as "systemic mastocytosis" or "mast cell activation syndrome", he called it "idiopathic urticaria".

Have you had a serum tryptase done? Apparently that is one simple test which can prove if there's a true mast cell disorder going on. Mine was negative.

The allergist put me on allergy medication which I took for about a year. He said the issue could eventually clear up on its own. Mine did clear up. I eventually stopped the allergy medication and was fine.

Interestingly, I also have elevated hemoglobin and hematocrit which can coincide with itching/rashes. I was worked up for polycythemia vera but was negative for JAK.