Severe Allergy to Paxlovid

Posted by hral @hral, Nov 5, 2023

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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@sallyfromdavally

I am currently on day 3 of paxlovid and I am experiencing severe itching all over my body. It just occurred to me that it might be a allergic reaction so I got online to read up on it and it led me to this forum. I am now worried and curious to know if you found anything else out? I am not going to finish the remaining packs.

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OHHH NOOO! I'm SO sorry you are experiencing this too! You are literally the only other person I've heard from in all my searching that has said they've had the same experience as me. I sincerely hope it doesn't alter your system the way it did mine. I've had two more hives episodes this year already...one to a trigger unknown Jan 3rd and again today from having two sips of Whiskey, which has never bothered me before. And I had Covid one time and took Paxlovid one time in May of 2021, and I'm still experiencing the effects of what it did to my system. The hives on my face and neck are brutal.

I haven't been able to find anything, nor any doctor to help. I have found a dermatologist who may be able to do extended patch testing on me to maybe help find out what might be triggering me, but as far as an MCAS dr that has knowledge of paxlovid/covid/mcas/autoimmune/etc, that also takes insurance and is willing to work with the patient...seems like a fairytale. and whatever covid/paxlovid has done to me has altered the way prostaglandins work in my body so most MCAS docs are going to look at histamine and then think everything is fine. I had to beg my PCP to test my PGE2 levels...took two months to get the results and found out they are WAY low...then the PCP has no idea what that means, so now I gotta find someone that does understand that...but anyone that does probably doesn't take my insurance.

I work for a functional medicine dr and the only thing we've found that helps stop episodes (for me), if taken immediately, is an OxBile supplement. And since MCAS does have a lot to do with the gut and ox bile works with the gut, this makes sense. It stopped todays episode in its tracks. The itching stopped within a couple hours. The rash will probably take a couple days to go away though.

I seriously hope you don't have to deal with any of this and that you heal quickly. Please keep in touch.

REPLY

After 2 doses of Paxlovid, I developed hives. Since Covid is reported to cause hives at times, and I am in a high risk group, I soldiered on, took a third dose. 9 hrs later, at 4 am, I woke up with a huge swollen tongue and swelling of my lips. I thought I was going to die! I managed to find 50 mg of Benadryl and after about 10 minutes, I could see a small improvement.
Over the next 24 hrs, I had severe angioedema, swelling of lips, inner mouth, edge of tongue.
That disappeared 48 hrs after last dose of Paxlovid, but I am now left with massive hives, unresponsive to large doses of H1/H2 blockers plus mast cell stabilizer ( Singulair). I think that the Paxlovid tipped off some cytokine auto immune problem and I'm afraid I will itch forever. I have requested an appointment with an experienced Allergist/Immunologist
From my reading, this is actually well reported, but Pfizer not getting the word out. Be sure to fill out the Medway here ADE report.

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@jbljax

After 2 doses of Paxlovid, I developed hives. Since Covid is reported to cause hives at times, and I am in a high risk group, I soldiered on, took a third dose. 9 hrs later, at 4 am, I woke up with a huge swollen tongue and swelling of my lips. I thought I was going to die! I managed to find 50 mg of Benadryl and after about 10 minutes, I could see a small improvement.
Over the next 24 hrs, I had severe angioedema, swelling of lips, inner mouth, edge of tongue.
That disappeared 48 hrs after last dose of Paxlovid, but I am now left with massive hives, unresponsive to large doses of H1/H2 blockers plus mast cell stabilizer ( Singulair). I think that the Paxlovid tipped off some cytokine auto immune problem and I'm afraid I will itch forever. I have requested an appointment with an experienced Allergist/Immunologist
From my reading, this is actually well reported, but Pfizer not getting the word out. Be sure to fill out the Medway here ADE report.

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I'm really glad you found the benadryl.

I think people who get that kind of swelling of face, throat /tongue are supposed to go to the hospital ER or call 911, no matter what medication caused it.

If I get any kind of rash from a medication, I talk to my doctor and pharmacist before another dose, just to be cautious.

REPLY

Hi there,
I just discontinued Paxlovid today after only three doses due to systemic itching all over my body. my doctor told me to go right off of it. The only history I have of allergy is an idiopathic anaphylaxis reaction several decades ago, when I was running in extreme heat and had a full-blown attack. I was not stung by anything and they have no idea if I came across some Lawn chemicals or something in the heat combined caused the anaphylaxis, I do have a history of hives when I am stressed, and severe localised reactions to bee stings, rashes with deodorant’s, creams, but I’ve never been diagnosed with anything but uricaria. I don’t know much about your conditions but I suspect there are more than 1% with allergic reactions and they are not all full blown anaphylaxis. I’m so sorry for what you’re going through. If the doctors that treat you for your current diagnosis are not able to help, I would contact an attorney who may be able to point you to a specialist as you may be shocked to find out you are not alone. I wish you all the best. Take good care.

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@annewoodmayo

I'm really glad you found the benadryl.

I think people who get that kind of swelling of face, throat /tongue are supposed to go to the hospital ER or call 911, no matter what medication caused it.

If I get any kind of rash from a medication, I talk to my doctor and pharmacist before another dose, just to be cautious.

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Yes. I agree. Unfortunately I was on vacation in an area without easy access to an ER. I realized it was a risk, and was prepared for the hour transfer if I didn't stabilize. I called my PCP at daylight, only to find out that he too is out with Covid.
Going for testing tomorrow though.

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Hey hral,
I can totally relate to Paxlovid reaction. Got Covid in July 2023. Soon after I had the 1st dose of Paxlovid, I broke into severe hives within 3-4 hrs after taking the first dosage. Swollen lips, itchy hives on arms and legs. My PCP asked me to stop the medication immediately. However I am suffering from hives ever since!!!
Nothing helps 🙁 all I do is to apply aleo gel and try take a nap which helps. But next day, new hives on new places on the body!! No medication, no tests have been of help so far!!
Have you found any solution yet?

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@sonyap

Hey hral,
I can totally relate to Paxlovid reaction. Got Covid in July 2023. Soon after I had the 1st dose of Paxlovid, I broke into severe hives within 3-4 hrs after taking the first dosage. Swollen lips, itchy hives on arms and legs. My PCP asked me to stop the medication immediately. However I am suffering from hives ever since!!!
Nothing helps 🙁 all I do is to apply aleo gel and try take a nap which helps. But next day, new hives on new places on the body!! No medication, no tests have been of help so far!!
Have you found any solution yet?

Jump to this post

Yes. I developed severe angioedema and hives lasting 4 days after 3 doses of Paxlovid. I was able to get things under some control with high dose H1/ H2 blockers ( cetirizine 20 BID, Famotidine 10 mg BID), and Singulair 10 mg at bedtime. I was still having some breakthru swelling of my lips, so reluctantly added a Medrol dose pack. I'm now at Day #10 and feeling like I might survive this.
I will be adding Quercitin ( as Quercifit) 300 mg a day, since research is pretty solid that it can stabilize Mast Cells.

One pearl that shows up in many clinical reviews about angioedema is that treatment requires much higher than standard doses of antihistamines. Like cetirizine ( zyrtec) 40 mg/day, rather than 10...and the first generation antihistamines ( benadryl, or hydroxyzine) ,while helpful for hives, do not penetrate soft tissue enough to help angioedema.

It's important to file all our Adverse Drug Reactions with FDA and Pfizer, since Paxlovid is still an EUA medication. It obviously can have profound serious side effects for some. The cheerful commercials advertising it are not the whole story.

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@jbljax

After 2 doses of Paxlovid, I developed hives. Since Covid is reported to cause hives at times, and I am in a high risk group, I soldiered on, took a third dose. 9 hrs later, at 4 am, I woke up with a huge swollen tongue and swelling of my lips. I thought I was going to die! I managed to find 50 mg of Benadryl and after about 10 minutes, I could see a small improvement.
Over the next 24 hrs, I had severe angioedema, swelling of lips, inner mouth, edge of tongue.
That disappeared 48 hrs after last dose of Paxlovid, but I am now left with massive hives, unresponsive to large doses of H1/H2 blockers plus mast cell stabilizer ( Singulair). I think that the Paxlovid tipped off some cytokine auto immune problem and I'm afraid I will itch forever. I have requested an appointment with an experienced Allergist/Immunologist
From my reading, this is actually well reported, but Pfizer not getting the word out. Be sure to fill out the Medway here ADE report.

Jump to this post

That is absolutely terrifying! When I took it it still wasn't FDA approved, so it wasn't on the paperwork (which I read over and over and over before taking it) i got from the walk-in clinic, but after my initial reaction I was able to find a small note about it on the web. It's definitely not being talked about given Paxlovid now has mass commercials out there for the drug. I filed two very extensive reports with photos. I hope it doesn't become systemic for you and that you heal quickly.

REPLY
@lea1

Hi there,
I just discontinued Paxlovid today after only three doses due to systemic itching all over my body. my doctor told me to go right off of it. The only history I have of allergy is an idiopathic anaphylaxis reaction several decades ago, when I was running in extreme heat and had a full-blown attack. I was not stung by anything and they have no idea if I came across some Lawn chemicals or something in the heat combined caused the anaphylaxis, I do have a history of hives when I am stressed, and severe localised reactions to bee stings, rashes with deodorant’s, creams, but I’ve never been diagnosed with anything but uricaria. I don’t know much about your conditions but I suspect there are more than 1% with allergic reactions and they are not all full blown anaphylaxis. I’m so sorry for what you’re going through. If the doctors that treat you for your current diagnosis are not able to help, I would contact an attorney who may be able to point you to a specialist as you may be shocked to find out you are not alone. I wish you all the best. Take good care.

Jump to this post

I wish my doctor had told me to stop taking it. I called two or 3 days into the drug and he said to finish it. now nearly two years after taking paxlovid one time and only having covid the one time, i'm still getting hives on my face and neck with no known trigger as of yet. I've had 3 episodes this year already. It does seem paxlovid does alter something in people's systems as I'm finally hearing from other people who have had long term hives since taking the drug. maybe an attorney is necessary. I'm still searching for a doctor who can help me. it's been a nightmare. I hope your itching resolves itself and doesn't come back. thank you for reaching out. take care.

REPLY
@sonyap

Hey hral,
I can totally relate to Paxlovid reaction. Got Covid in July 2023. Soon after I had the 1st dose of Paxlovid, I broke into severe hives within 3-4 hrs after taking the first dosage. Swollen lips, itchy hives on arms and legs. My PCP asked me to stop the medication immediately. However I am suffering from hives ever since!!!
Nothing helps 🙁 all I do is to apply aleo gel and try take a nap which helps. But next day, new hives on new places on the body!! No medication, no tests have been of help so far!!
Have you found any solution yet?

Jump to this post

@jbljax and @sonyap yeah, i feel sick to my stomach when I see the Paxlovid commercials. I had several doctors put me on massive amounts of zyrtec and clartin with pepcid...which my body just laughed at. then 2 weeks of prednisone which did nothing and then an even higher dose of prednisone 60mg for 5 weeks. this only altered the way the hives came on. but they still keep coming. but mine is regulated to my face and neck with very distinct borders...so strange.

stress is one of the triggers, i've learned. but then so is whiskey and dust and god knows what else! the planet is no longer safe to live on! lol i'm starting to figure out it might be connected to MCAS and prostaglandin (vs histamine), because my histamine numbers keep coming back "normal" but my PGE2 recently came back as 67 when the range is 200-400. I had to beg my PCP to run this test and when the results came back she didn't even know how to talk to me about it. most drs don't know much about PGE2.

the ONLY thing i've found that works (FOR ME...obvs not providing a medical recommendation) is the supplement Ox Bile. Because MCAS is typically found in the gut and can be connected to the gallbladder, it makes sense (for me) that ox bile is helping me. If i take it fast enough(within a couple hours) at the start of a hives episode, which always begins inside my ears first and then works it's way across my face, then neck, then forehead, i can stop it in it's tracks. But if i've missed the breaking point...it's all over. i've never had gallbladder issues before and now i can feel pain in it almost daily. i swear if this drug has messed up my GB, i'm gonna be livid.

also...you can't itch the hives...they spread like wildfire and it becomes unbearable and lasts weeks vs a few days to a week. aloe helps and ice packs. ice packs all day and night. just stock up the freezer and when they get warm, trade it out for a frozen one. I'm so sorry you're dealing with this too.

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