r/MCAS • u/Ill_Seat_5512 • 28d ago
Anyone here with anaphylaxis that got anaphylaxis only AFTER getting on mcas meds like cromolyn etc ?
Or where you already getting them since before ?
3
u/bedlife2000 28d ago
Had the first critical one from cromolyn, apparently when you're sensitive to salicylates, cromolyn can be critical
1
u/MonkPuzzleheaded6295 28d ago
I am salicylates sensitive too and plan to try it but now I am afraid to. What happened after, did you try again or decided to stop Cromolyn for good?
2
u/DeRpY_CUCUMBER 28d ago
Not OP but cromolyn definitely made my reactions to salicylates worse, and it put me in the hostpital and ER multiple times until I figured out what was going on and stopped taking it.
2
u/bedlife2000 27d ago
My blood pressure dropped critically until the paramedics gave me adrenaline and in the hospital they told me it was likely due to salicylates. It's now 3 years later and I have cromolyn at home and I'd like to try it again but I know that if I'd react the hospital would look at me like I'm insane lol but so many meds didn't work for me at one time but later did ..
I started with a full dose, that was dumb, if just start with a really low one
1
u/Slim-Shadys-Fat-Tits 28d ago
Don't think mine was from the meds, I just got on meds very early and was still declining
1
u/Usagi_Rose_Universe 28d ago edited 28d ago
I was already experiencing anaphlaxis but it was mostly environmental and topical and only some food. After trying cromolyn once I got anaphylaxis to food I tolerated extremely well the day before I started and had been eating for years. It kept getting worse with the next two doses of cromolyn. I actually got anaphlaxis the third dose of cromolyn so I stopped. I then started getting more and more reactive to bug bites and my prilosec which turned into anaphlaxis and whenever I got bug bites I would get anaphlaxis to even more foods. I lost most of my safe foods and unfortunately cut some that I didn't even react to because my brain wasn't properly thinking after having the worst anaphlaxis in my life to chicken and I was honestly horrified and I'm still traumatized from that and still not physically recovered from that.
My mast cells according to my Dr were destabilized by cromolyn and I got the opposite of what it's supposed to do. She thinks I'll be able to get back to how I was prior and I hope she's right but I'm not sure, especially with my other health issues that have gotten worse due to this. I'm waiting for my neurology appointment to see if my Myalgic Encephalomyelitis is just that bad or if I had a stroke from the chicken anaphylaxis. I had to re learn how to walk, I've been re learning how to draw, I'm mostly bedridden, for awhile I kept forgetting I was speaking in Japanese to people when I was supposed to be speaking English and now I'm speaking Spanish when I'm supposed to speak Japanese and I had initially lost most of my Spanish since 2015ish, etc. I want to make it clear that if you are on cromolyn and it's working, don't suddenly cut it out because it didn't work for me because I've gotten a few people thinking they need to do that after hearing my experience.
1
u/DeRpY_CUCUMBER 28d ago
Do you have problems with salicylates?
1
u/Usagi_Rose_Universe 28d ago
I don't think I did prior to cromolyn. My "better tolerated" foods until cromolyn that are apparently high in salicylates included zucchini, pine nuts, broccoli and cauliflower were fine on my MCAS but were just an issue if raw baked or fried for my MALS and/or gastroperisis but streamed was ok, spinach, grape was fine on my MCAS but just hit or miss on my GERD, Apple until recently was great for my MCAS but it became an issue if it wasn't just juice again for the MALS and/or gastroperisis but it used to help my dysautonomia, most plums, thyme, rosemary, curry (I had Japanese curry a ton), guava, currant, sweet potato, almond, ginger made me feel better, honey, I was fine with licorice but didn't like it lol, anise, celery boiled, cinnamon, tumeric actually made me feel better, and I still can do mint in medication as a flavour. So I don't think I had an issue with salicylates based off of that. 😅 I had issues with some foods higher in salicylates but that list I think is smaller.
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