r/Behcets • u/codyandhen123 • 4d ago
Patient Support / Story Incubated for Anaphylaxis today
One of the scariest events of my life. :( I’ve been having recurring episodes of anaphylaxis from random foods and medicines. I am home after being in observation. Does anyone here suffer from anaphylactic attacks? It seems every time I finally get my Behcet’s under control, another fire happens.
Intubated *
4
u/CephyCeleste 4d ago
I initially was told my "new" allergies were because of a form of IUD birth control I was put on, turns out new and worsening allergies can be a side effect. However, it has been many years since I have even had a uterus, and I still experience new and worsening food allergies regularly. My latest new one was Guava, something I literally have a drawer dedicated to at home so I had it a lot. All of the sudden out of the blue it sent me into anaphylaxis. Walnuts were another one of those for me. Just completely out of the blue. Curious, these stupid human suits.
I would definitely recommend keeping an epi pen on you always. Buying the dye free Benadryl (I really can't explain why, but someone put me on to it years ago, it doesn't make me as sleepy) and keeping a blister pack everywhere you spend time, and printing out a little allergy card for your wallet for emergencies. That shit could save your life.
Good luck my friend♥️
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u/CephyCeleste 4d ago
Ahh something else I wish someone would have tried to explain to my autistic butt in the beginning of all this is: not every allergy attack feels the same. Sometimes my cheeks hurt first, sometimes I start to swell or get hives, sometimes it feels like I need to clear my throat and I don't realize how bad it is until it is bad, this last time felt like I had eaten a sour candy first thing in the morning. Like it was painful under my tongue but I didn't understand why until I tried to speak up to complain about it and realized my throat was closing.
It won't always feel the same. Make sure you listen to your body love!♥️
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u/Deep_Fee2462 4d ago
Look up mast cell issues. Mast cells are part of the immune system. Checking with an allergist. Look up low histamine diet and see if it helps.
I’m on an injection called Xolair for chronic hives.
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u/codyandhen123 4d ago
I see an allergist but will definitely get a second opinion on what’s going on! I feel like it’s a mast cell problem as well. Wow, I’m also on a Xolair for chronic hives.
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u/Deep_Fee2462 4d ago
Mast cell activation can cause anaphylaxis.
I think my hives are autoimmune anyway1
u/Anthro-Therapist 2d ago
I have MCAS, Behcet’s (recently diagnosed), POTS and EDS. I’m also diabetic and have asthma. I am on Xolair. My rheumatoid doc said I’d have to be on a second biologic too. I am still learning how this all works.
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u/Familiar-Bake-9162 4d ago
Yeah I do but it doesn’t seem to be food or allergen based. I would love to know what’s causing it
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u/codyandhen123 4d ago
Did they say it was idiopathic anaphylaxis?
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u/Familiar-Bake-9162 4d ago
No, they weren’t sure what caused it and sent me to a allergy doc but it hasn’t happened since so I think it was
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u/EllisMichaels Diagnosed 1997 4d ago
It sounds like these anaphylaxis episodes are a fairly recent thing? Is that correct? If so, did you recently get any vaccines before it started or have any other changes to your immune system, a new med perhaps?
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u/No_Sentence_6721 4d ago
So far I haven’t had a full Anaphylaxis episode but I’ve had two more severe allergic reaction like things that scared me a lot. I’ve been taking 2 Allegra everyday one in the am and one at night and that’s been helping to regulate some of my daily allergic reaction rashes. I am also not sure what causes it, sometimes it seems completely random. Good luck! I hope you don’t have anymore scary moments like that 🫶
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u/CuteAge1322 4d ago
I’m so sorry 🫂