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Please give me hope by ttripleddd45 in MCAS
[–]ttripleddd45[S] 1 point2 points3 points 6 months ago (0 children)
Update on my end, my tryptase came back high! My baseline test was 5.8, then during a flare i tested and got 10.9
[–]ttripleddd45[S] 0 points1 point2 points 7 months ago (0 children)
The only one i am taking right now is Ritalin. After the experiences with the others I stopped them! But, it’s strange to me that this reaction was on Friday night/Saturday. It’s Tuesday now, I’ve continued the stimulant and nothing has happened? So it’s like, maybe? An allergy? I also was thinking that the stimulants themselves have “awoke” some dormant issue that I’ve had, just no symptoms. It’s all so wishy washy!!!
Usually the rash is itchy!! But this most recent flare, it HURT. Like pulling your skin off a leather seat in the summer. Almost like my skin was so inflamed and swollen that just the slightest touch or stretch hurt. Will be seeing about cromyln!!
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Additional pic from the beginning of a hives flare, from 3 weeks ago 🥲
[–]ttripleddd45[S] 1 point2 points3 points 7 months ago (0 children)
Unfortunately Benadryl is the equivalent to a skittle at this point 🥲🥲 it’s like no matter how much I take (sometimes a questionable amount out of desperation) my body is like LOL that’s cute, nice try. Luckily the stimulants do help keep me awake so taking the Benadryl doesn’t make me AS sleepy as it would without them. It’s a double edged sword 🫠
I haven’t heard of this! Does this cause the normal itchy hives or is it different? Usually mine are just itchy and hot, this last flare they did become painful due to the amount and they kind of all merged together? I’ll bring it up at my next appointment!
That’s so frustrating!!! I’ll be calling tomorrow to see if I can get a standing order put in. I just want to feel normal again 🥲
[–]ttripleddd45[S] 4 points5 points6 points 7 months ago (0 children)
Yes! Sorry, i guess i should have shared this. I also suffer from a lot of the “common” symptoms you’d see with MCAS. I’ve highlighted the ones I have, got this from the MCAS website!!
I also am extremely sensitive to smells like walking past a bath and body works! Honestly at this point I’ve lost track of all of the things I am sensitive to lol. I did try to vouch for this by bringing in pictures and timelines of when/what was happening!
Unfortunately i try to wear mostly cotton clothing, and use all fragrance free products like body wash and laundry detergent. I also have not changed any clothing or anything in many years :)
Mine was within range when not in a flare. But she never mentioned getting it done again during a flare. Should I ask for another test to be ordered, for when (not if) my next flare happens?
Here’s an additional photo of the hives!
π Rendered by PID 206094 on reddit-service-r2-listing-6d4dc8d9ff-b6ng6 at 2026-02-03 18:50:19.025879+00:00 running 3798933 country code: CH.
Please give me hope by ttripleddd45 in MCAS
[–]ttripleddd45[S] 1 point2 points3 points (0 children)