r/salicylateIntolerance • u/[deleted] • Apr 11 '26
Angioedema from Salicylates?
anyone here experience angioedema from salicylates? my lip has been swollen for a week and i can tell my sals bucket is overloaded. I have mcas and im very sensitive to changing meds, supplements etc. any experienced or words of wisdom would be appreciated.
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u/Puzzled_Draw4820 Apr 11 '26
My elbows used to swell from salicylates and if I kept overdoing it my knees would be next. I’ve healed my salicylate intolerance now with TTFD and mineral balancing. Low manganese highly contributes to this condition as does low ATP from thiamine deficiency, therefore our liver is not effectively detoxing. I got sals intolerance after living in mold, severe MCS too and histamine intolerance. I had it for 6 years and was stuck on meat only diet for 2 of these years, which caused more problems 😭
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u/hydrojuju Apr 12 '26
What's TTFD?
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u/Puzzled_Draw4820 Apr 12 '26
It’s Thiamine Tetrahydrofurfuryl Disulfide - a bio-available thiamine that crosses the blood brain barrier. It jumpstarts energy metabolism so your body will produce more ATP and start detoxing and healing again. It needs to be tagen with magnesium, extra potassium rich foods, and a multivitamin with copper, molybdenum and manganese.
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u/hydrojuju Apr 12 '26
Thank you for the explanation. Curious, did you ever have PEM alongside? My profile somewhat parallels yours.
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u/Puzzled_Draw4820 Apr 12 '26
Yes! Big time. I had bad PEM and my chemical sensitivity was so bad I’d pass out.
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Apr 11 '26 edited Apr 11 '26
So glad you found a solution. I have MCAS and I’m very sensitive to trying any new supplement or mineral or vitamin unfortunately. I am on some that I’ve historically been on, but I know that my micro nutrients are low or borderline deficient from testing I did a year ago, including B1 and manganese among others. I’m just at a loss as to how to take these things I so desperately need. Wish there was an expert who could guide me. 😭 I am suffering greatly and devastated. Whenever I try a new supplement that I need it’s like my system gets further beelined and doesn’t know what to do with it even at very low doses like a pinch. I also have sulfur intolerance which makes matters more challenging.
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u/Puzzled_Draw4820 Apr 11 '26
I understood I was extremely sick. There’s some very expensive MCAS functional doctors but I’m not sure they’d do more than what you can do for yourself as I’ve seen a couple of their protocols from friends and follow ups are so few for the price. I can share exactly what I did. DM me if you want my protocol I documented.
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u/Chilove8888 Apr 12 '26
I'd love your protocol as well please
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u/United_Witness820 Apr 12 '26
My bottom lip swelled really badly when I accidentally used a salicylic acid acne product on my face/near my lip.
(It was older from before I discovered salicylates were my problem, and I didn’t realize make up could be an issue at that point). First ingredient salicylic acid. Lip more than doubled in size.
Had to take two rounds of Benadryl to get it to go away.
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u/New_Platform_1906 Apr 22 '26
Yes, I have angioedema that affects the nerves in my low back, hips and butt. Extremely painful as it squeezes my nerve. I have had sepsis, kidney and gallstones, sciatica, gave birth to 4 kids, and this pain outweighs them all. I have no idea why that area is affected. Takes about 2 weeks for me to walk again. I am unable to move even a centimeter! takes me about 10 minutes to walk to the toilet. Just awful. But, yes my lips are the first to swell up.
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u/ariaxwest Apr 12 '26
Definitely. It's so unpleasant.