Severe Allergy to Paxlovid

I am desperate and I can't find anyone out there that is talking about this. It has drastically altered my quality of life. If I can get answers or help someone else, this post is worth it.

I had Covid in May '22. I took Paxlovid on day 3 as my Covid symptoms caused my asthma to flare. Within the first hour my face started itching & I didn’t know it then, but I was clearly allergic to the drug. I read all the paperwork I was given and there was no warning of this, but now looking online, Paxlovid warns of severe allergic reactions that involve everything I’m experiencing. As someone with a lot of allergies, in the middle of pollen season, I didn’t realize it was the meds until too late. After finishing the 5 days of Paxlovid, I had a full on face rash and hives that lasted for a MONTH. After the 1st round healed, the insanely itchy hives and rash returned on a monthly basis, each episode lasting a min of 2 weeks, with no apparent trigger.

I tried every single histamine blocker in western & eastern medicine, have more ice packs than food in my freezer, & took a 2 week dose of Prednisone and got no relief. I work for a functional medicine doctor and she's been trying to help. After 7 months of wanting to crawl out of my skin, I gave in to doctors 5 week high dose Prednisone. It stopped the monthly cycle of hives with no trigger & shifted it to rash and hives, but with allergies & stress being the obvious triggers. So there must be some relation to hEDS, MCAS, Paxlovid, Covid, Autoimmune that can alter how the body reacts to triggers in people with severe allergies, etc. But I can’t find ANYONE that’s talking about it. I can’t be the only one. My histamine tests come back normal, so I'm looking into prostaglandin levels. As an hEDS and MCAS person we often have negative test results which only leads to more frustration, but clearly SOMETHING is happening.

After that the hives and rash returned based on exposure to known (dust) & unknown (glitter) allergens & stress. Paxlovid has altered or triggered something in my system that changed the way histamine and/or prostaglandin of Mast Cells in my body react to stress/allergies & for some very strange reason the hives and rash localized themselves on my face & neck. After the hives start to dissipate, the heat from the hives which has gotten up to 103 degrees has burned my face and then my face starts to peel for days.

During the 1st episode, I filed a report with Pfizer, but never received a response. I asked multiple Allergist’s & specialties & all they do is shove prednisone at me because they are stumped. I tried to find an MCAS specialist, but they either are not taking any new patients or they don’t take my insurance. My current allergist has no idea what to do and sent me to Emory, but Emory is refusing all new allergy patients. I cannot live like this and I hope there is some positive insight out there. I know I’m in the 1% and I’m sick of doctors telling me, “You’re in the 1% and I can’t help you.” After a year and a half of dealing with this, I'm losing my mind and my mental health is being severely altered. I need help!