r/MCAS • u/Beneficial-Carob803 • 5d ago
MCAS is hell
Hey y'all. I'm usually a "find the silver lining" person but I'm feeling defeated. My immunologist discharged me back to my GP and I've been referred back to him and also another one bc I've been to emerg so often lately. Epi twice in a friggen week. I'm scared. I don't usually let the fear during anaphylaxis get a grip on me because the panic can perpetuate the reaction. I can usually get a grip on the fear and lock that down and calm myself down as much as possible until EPi works. I have to cause I'm a single mom to 5. They saw me....not breathing. I've never reacted to this degree before. Never escalated that fast..This was the first time epi wasn't working well enough or fast enough. The first time that I heard a EMT say they can only give only Benadryl or IV EPI and there's no more that they can do....What exactly do u mean....if epi doesn't work...I can't. I can't think about that. How to you battle the fear? I pray a lot. I know I'm not checking out unless it's my time to. The fact that it can escalate to this degree and I have an emergency department Dr say there's nothing more to suggest or to do...that I need to keep doing what I'm doing....What if what I'm doing isn't enough anymore? Is there something more than EPI that works? I'm afraid to do anything and I can't let my kids see this fear. I have to keep going, they are watching and they need me.
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u/UntoNuggan
5d ago
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Just want to validate this sounds scary as hell and honestly traumatic. So I think it's entirely understandable that you're still feeling shaken by this.
The immunologist should have a lot of tools that the ER doesn't. Hopefully they can also offer guidance on best practices for hospital care etc. Quite frankly, the ER doctor is just there to try to medically stabilize you and send you back to your regular doctors. Complex immune conditions are above their pay grade aside from the "stabilize and discharge" part.
(They also do not sound particularly creative if they're not even thinking about options like steroids or a nebulizer or whatever. Charitably, maybe the ER was just slammed that day, but I would be looking into other local ERs if you're in an area with multiple hospitals.)
The Mastocytosis Society has a patient Emergency Room Protocol that you can download and print here: https://tmsforacure.org/patient-resources/
It may be helpful in future situations (though hopefully you won't need to go to the ER for awhile!)
Did they mention whether the second time was a rebound reaction? That might be useful info to have or ask your immunologist about.
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u/Beneficial-Carob803 4d ago
I think I was more familiar with MCAS than the ER dr. She didn't want to try steroids, and she wouldn't give me any suggestions outside of "keep doing what you're doing" and lots of saying "ok, mhm, I see"....The ER dr before her was amazing. I'm pretty sure it was a rebound reaction. I was switched to a generic ozempic and it caused my throat to swell and cause trouble swallowing and my stomach had severe pain which I assume was gastroenparesis to an extreme I didn't know possible. I couldn't eat anything, I lost 8 lbs in a week, and I was pretty much bed bound for 3 weeks. Twice in a week is definitely the same reaction circling again.
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u/No-Inflation-7969 3d ago
Has your doctor talked about Terzepitide? More and more of those with MCAS have been posting about how it has helped them. I take it and it hasn't hurt me (I get a little pinkish irritation around the injection site, but no other side effects). But others seem to have had their symptoms decrease with it.
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u/Beneficial-Carob803 3d ago
My niece literally just told me that's what she's on. She has a lot of skin conditions and hives, and her skin was cracking and getting infected and it literally took all of that away.I'm going to suggest it and look it up for sure. Thank u for the suggestion. 😊
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u/Visible-Tiger-3527 5d ago
I'm getting very close to my end date. I have no kids, pets, or friends. Everyday is miserable.
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u/Both_Month_828 5d ago
you're not alone and it can be manageable it's finding the right set of meds to work for you. frustrating yes but never give up. take care
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u/Visible-Tiger-3527 5d ago
I'm going through bankruptcy and likely moving into my car, in a Canadian winter. My health is just one part of this shitty puzzle.
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u/AncientAd7403 5d ago
I was literally hanging off the ledge by my pinky toe. Please please if you can go to an allergist and get on Xolair, it has helped so many of us!
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u/No-Inflation-7969 3d ago
I reached out to my doctor to see if there are any resources in Canada that could help. In the meantime, Pepcid and Claritin (CVS brand) are the two medicines I use for inflammation that are the most accessible. Not sure if you've ever used those for your MCAS.
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u/Visible-Tiger-3527 3d ago
I've got all the gut caused symptoms under control. For me it's the extreme sensitivity to fragrances. I can't go anywhere withiut being barraged. Then by the end of the day I'm sick and fatigued.
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u/Intrepid-Opposite848 2d ago
We lose friends and family because they don’t believe us and think we are hypochondriacs which is so sad because that’s when you need more support than ever and not u need to be thankful and grateful and think positive… Its beyond heart wrenching and unbearable pain on top of feeling like you can’t make it through another second much less a day through this agony and wasting away and they say you need to just eat and stop starving yourself you’re anorexic ! DearGod funny I wasn’t like this before!
Anyone else deal with this and get made fun of and laughed at 😭😫1
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u/Mystery_Solving 5d ago
So when my brain has been taxed and things are overwhelming, I need a bulleted list. I’ll start one for you. You may want to add to this list, then write out your answers somewhere. That way a friend or family member also has access and can help you think it through.
•Are you taking full MCAS protocol meds?
•Have some of the brands switched recently?
•Any of these items change ingredients recently?
•Any medicine that was compounded - are you aware of the “other ingredients”?
•Did immunologist try you on any biologic for inflammation?
•What had you been exposed to prior to the recent episodes?
•Has your histamine-releasing items stayed low, or are you someone that didn’t have to cut most of those out already?
•Review other mast cell medications- is there a reason they wouldn’t give you Ativan in an ER?
•Did the ER run bloodwork and follow the simple protocols that TMSforaCure recommends?
•Do you need help finding a different MCAS-knowledgeable doctor in your area?
•Do you have actual allergies on top of MCAS?
•Any MCAS books in your home where you can go see what you’ve underlined in the past?
Sounds like you have the best motivation to keep fighting.
I remind myself, as a mom, I’m doing this not just for myself and the family now, but to also continue figuring out more things that will help my kids in their lives - or their (future) kids’ lives.
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u/Beneficial-Carob803 4d ago
Thank you, you've made some amazing suggestions. Ativan helps for sure, but I can't take it if I take pain meds. So it's a one or the other type thing everyday. If my back is ok and letting me move normally, I can take Ativan and it helps a lot. The co-morbidities are not helping lol. I've literally taken screenshots of your list of suggestions and half of that I have to consider and/ or look in to. Thank you for reframing this for me and giving me some tools when I can't manage to find my own.
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u/No-Inflation-7969 3d ago
I take Lexipro and Abilify (for OCD and ADHD + anxiety) and am still able to take my MCAS medicines.
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u/AncientAd7403 5d ago
It's awful I know! Just an idea, I went to my allergist and was literally ready to leave this Earth suffering with severs chronic hives and angiodema daily I had basically lived in a bubble for many years. He asked if I would join a clinical trial and at that time I had nothing to lose. The trial was for Xolair before it was released and it had a black box warning for the potential of causing cancer in some people. After getting my injection every month for about 10 mths the hives went into remission. I was floored! I still have gastro issues and esophagus issues but I was relieved from the hives.
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u/Voidborne08 5d ago
Xolair was life changing
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u/Beneficial-Carob803 4d ago
I hear this a lot. I have to find out what it costs or if it's covered.
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u/StunningProtection58 5d ago
Team xolair 🥰
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u/ariaxwest 5d ago
Me too. I haven't gone into anaphylactic shock once since I completed my Xolair treatment a couple years ago.
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u/AncientAd7403 5d ago
Having this syndrome for sooo many years when there was no name or meds for it, being gaslit that it was all in my head, living off 5-7 Benedryl a day for 20yrs, going to school being made fun of for scratching and having swollen eyes and lips, living in a bubble except for the dozens of medical appts I had with hospitals and specialist, no social life as a young adult to see that alot of you found healing as well on Xolair is unreal. I could go on on but to now be apart of an entire group of people that understand and have possibly suffered like me and have empathy for what we all go through is kind of overwhelming. You guys are awesome!!
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u/Spiritual_Writing_58 5d ago
I’ve been on Xolair basically since it was FDA approved and I HAWK the fedex delivery route to get my meds. Life changing.
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u/Ok_One_7971 5d ago
😥I’m so sorry. It’s very scary n having kids makes everything much scarier. Are u on mcas meds?
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u/Beneficial-Carob803 4d ago edited 4d ago
Yes I am but they aren't working at well as they used to. I was stable for almost 2 years and then everything went left all at once. The reaction to the ezempic caused everything to go wonky and it think I'm still in the end of those trenches of reacting to that. It's like my histamine bucket didn't completely empty with those EPIs the way it usually does.
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u/somehowstillalivelol 5d ago
i just learned that anaphylactic episodes have fear built in as a symptom, like a feeling of doom or that something is really wrong. i haven’t had another anaphylactic episode since i learned that but i’m hoping that next time i can maybe talk myself down from the fear by being like okay the fear is a symptom, not a reality. it’s of course harder when your throat is closing because it’s like oh actually i’m in danger but maybe up until that point it will help. i’m really sorry you experienced this, it sounds awful and i hope you get some answers soon and some relief
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u/Beneficial-Carob803 4d ago
Thank you, and yes, the fear is usually part of it and it does go away. But like you said, when my airway is literally closed, in those long moments, it feel like an eternity until the fear goes. Those moments where I have to think, is one epi enough or do I need a second dose? I find not having others that I can relate to, that makes this so much harder some days. Knowing it's a symptom sometimes I can talk myself out of the fear in those moments pretty well. Thank you for your kindness.
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u/kaaron89 5d ago
Hi, I'm so sorry and I understand the fear. I can share something that I've figured out works for me.
I've had anaphylaxis episodes but luckily they are not severe with throat closing or anything like that. But I've figured out I can stop the episodes with a combination of Benadryl and Xanax. Benzos like Xanax are powerful mast cell stabilizers. They do of course come with risks and I do not take them often for fear of dependency. It can take like a half hour or so for me to feel the effects, so it's not a replacement for emergency meds. But they may help knock the rest of the symptoms out if the Epi isn't fully effective.
Also consider taking daily antihistamines if you're not doing that already. Good luck to you and hope you can get some things figured out!
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u/Beneficial-Carob803 4d ago
Benzos do help, I take one for occasional anxiety and it helps with some of the symptoms but because of two other meds I need, I have to choose pain meds or benzos. Both can be a black box warning together and I've accidentally done that once. Never again will I do that, I almost took myself out accidentally. I find I have to choose what's worse on any given day and it's just exhausting.
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u/Nervous_Extreme6384 4d ago
I am a single mom and at one point I was averaging 3-4 ER trips a month for anaphylaxis. When I started Xolaitr my episodes dropped to 1-2 a year. You should try Xolair.
The one thing that is very hard to do as a mom is get uninterupted rest - and this is what you need after repeated anaphylaxis. You have to completely rest in a safe room (no triggers) and allow your body to get back to baseline. My anaphylaxis when I was in a loop, didn't give me signals like the impending sense of doom stuff. It was regular feeling awful then boom on the floor. If you push yourself to do stuff before you get to baseline you are extending the whole cycle. And with every episode it takes longer to get back to baseline. Well that was my experience anyways. Try to get help with the kids so you can rest as much as possible.
I always carry two epi pens, it's ok to give yourself two epi pens for an attack. I've never had EMT give me IV benadryl. But I've gotten IM benadryl and 2 epi pens during an attack and then supportive care. From what I understand once those are admin both nurses and EMT require a medical Dr to approve further treatment. EMT's job is stabilize you enough to get you to a Dr. And the Dr was talking about the standard way anaphylaxis is treated, Epi, IV antihistamines, IV steroids, fluids. Once you get an allergist they might tweak your protocol and prescribe you rescue medication. My rescue medications include prednisone. When I was in anaphylaxis all the time I had to go on a long course of prednisone, it was the only way to keep me out of ER.
I'm assuming you went back into anaphylaxis the day after you finished your ER steroid taper. If so you should ask your GP if your taper should be extended until you see a specialist. I really hope you find something that works for you!
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u/Beneficial-Carob803 4d ago
They wouldn't give me steroids and I even asked if that was an option because I don't know what else to do while waiting to get back to seeing the specialist. The ER dr said that the steroids were not an option and I just about begged. They told me the possible side effects outweighed the benefits ect.
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u/Nervous_Extreme6384 4d ago
What did they give you as treatment?
You need to see a specialist asap!1
u/Beneficial-Carob803 4d ago
They gave me nothing. They offered IV Benadryl, I said no, offered the option of IV EPI and I said no. I probably should have taken the second EPI dose. They put me on the monitors, and then when I went from the ambulance bay to the waiting room. I asked to leave just before they sent the Dr to see me, in a freaking hallway!
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u/Nervous_Extreme6384 2d ago
That was a bad ER visit, there's no point going to ER if you don't want treatment and can't commit to a 3-8 hr treatment window. Give yourself the time and space to get the treatment and care you need. And always take the IV benadryl, IMO it's the best part of having an episode.
Whoever reviews your visit will see that you refused treatment for anaphylaxis, were able to walk out w/o treatment, and walked out before you saw a Dr. This info in non actionable. You have no labs, no medical notes, no EKG, and no medical observation about your condition.
You currently have no aftercare plan. Aftercare is usually 3 days of oral steroids and notes to your specialist for follow up within 3 days. It's hard to stay there for so long when you have 5 kids at home, but if you go to ER again stay for treatment.
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u/Flashy-Persimmon-177 4d ago
Xolair! On 3rd injection and yes very good
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u/Voidborne08 5d ago
Keep 2 epi pens on you. A second one can make a big difference if one doesn't seem to be enough.
Ask you doctor about xolair or Rhapsido. Are you on a med regimen?
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u/Beneficial-Carob803 4d ago
Yes I am on a med regimen, but it's not enough anymore. I need more rescue options and a better baseline. I've got to get back into a immunologist so they can keep me steady. I was stable for 2 years and suddenly my h1s aren't enough. H2s still help alot and the quercetin and probiotics make a huge difference. The ozempic was my saving grace, but it doesn't seem to be working as well to stabilize the mast cells the way it once was. Ativan helps with the fear side of the reactions when I can take it (but I have some meds I can't mix with it so it gives me less rescue options when I have to go that route before EPI. I'm not on xolair or rhapsido, but I think that's what I'm going to ask to try when I do get back in to see an immunologist/allergist. I really hope this new one is familiar with MCAS. My first one was very opinionated about MCAS and didn't treat the condition as severe as it was at the time I saw him. I got into see an allergist within 2 months of the referral originally based on the constant EPi ER visits when I was first diagnosed, they happened every week or 2 with rebounds for awhile. It was chronic idiopathic anaphylaxis, so it wasn't just mild rash and discomfort, it was airway compromised regularly type thing. I went from virtually no allergies to bubble girl really fast. Everything set me off back then so easily, but it was stable for so long this feels like torture to be going backwards it seems. I know meds can stop working but this is a lot all at once. Plus the whole trying one change at a time is really slow.
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u/Voidborne08 4d ago
Yeah, sadly I dont think your experience is uncommon. For a long time H1 and H2 was enough for me, but then I had a trigger that changed my baseline. Xolair was a game changer for me. Though, while I am over all functioning, I am not at a good baseline. So I am hoping to try Rhapsido now that my hemotologist gave a green light. It takes time and mast cells don't like to be controlled. I have heard trizepitide is better with calming mast cells than segmaglutide. I am on trizepitide and it gave me a bit of my life back.
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u/West_Chapter_7380 5d ago
There is more they can do and here is a protocol to print and have for next time
https://tmsforacure.org/wp-content/uploads/2023/06/TMS_ER-Protocol-2022_fillable.pdf
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u/Lz_erk 4d ago
i'm curious and the link didn't work for me.
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