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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!
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Contact Joeswfl(@joeswlf On Mayo clinic connect LC support grp. He sent me 3 articles that I found very helpful and interesting. Mast cell activation diseases. Hope they help you. I too am a 46 YR. CFS/ME Survivor and now LC on top of this. Very overwhelming. I agree with you. Hang in there. WE are there for you. Keep us posted.
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2 ReactionsAlso have you seen a hematologist( tx MCAD's) or an immunologist ( not an allergist which you have already seen) or even a regular dermatologist. Do you have a LC clinic hear you? I have one in Seattle 40 miles north of me and have been trying to get in there for a long time( 4-18 months so far) and the wait list is long due to all of the patients trying to get in. They wont even tell me what kind of treatments they offer or will allow you to join their online support grp until after you have been seen even though my app has been accepted just waiting for an appointment.??? So glad to have found this online support grp. as I dont know anyone else with LC. Who knows?? The clinic might not do anything more than run some basic tests and tell you to eat healthy and exercise.??????
Hey! no i haven't looked into those dr options. thank you for the suggestion. I never even considered this would be LC until yesterday, so i haven't done any searches on that front. UGH i feel rage for you with the wait AND zero info! how maddening!!! I'm so sorry!!! yup, i get the "here are some weight loss pills" and "prednisone" and "i can't help you, you're the 1%". the problem is i never had a problem with weight until i started taking all these pills! i was an athlete and now i don't even recognize myself. Sending Hugs and Hope!
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1 Reactionthank you. is there a typo in that contact?
Yes sorry. ( LC brainfog). It is Mayo clinic connect joeswfl@joeswfl. Hope the 3 links for 3 articles help you.
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1 ReactionHope the info that I sent you helps. That is what a support group is all about. SUPPORT. I have learned more from support group members in various health group support groups than I ever learned from providers who treat these medical conditions. How r u ?
@hral and @dmlindeman, it appears that this member has only shared information by private message, which is fine. I just caution to use good evaluation skill to determine if the information is from a trusted health authority. Be wary of any websites wanting to sell unproven products and miracle cures. I'm not saying that this is happening, it's just good practice to have a critical mind as well as an open mind. 🙂
This article might help:
- How To Evaluate Health Information on the Internet: Questions and Answers https://ods.od.nih.gov/HealthInformation/How_To_Evaluate_Health_Information_on_the_Internet_Questions_and_Answers.aspx
I am new to this online support grp. and am not sure how to post for everyone in the grp. I just responded to @hral question. Plase let me know the right way to post to the grp. I also am NOT very computer literate. Agree with you about websites wanting to sell unproven products and miracle cures. You have to be so careful. Thanks.
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2 ReactionsYou posted perfectly. When you reply to a specific member, like you did just now to me in this discussion, it is still visible to anyone following the discussion and the support group.
Here's a more detailed explanation from the Help Center
– Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
thank you. well, if i can ever figure out how to message the person you recommended to get the articles you're talking about, i'll let ya know! hahahahah thank you very much. my face has just finished healing from the last episode.
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