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!

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Colleen Young, Connect Director | @colleenyoung | Nov 10, 2023

In reply to @hral "thank you. well, if i can ever figure out how to message the person you recommended..." + (show)

See more tips on how to use Mayo Clinic Connect in the Help Center https://connect.mayoclinic.org/help-center/

hral | @hral | Nov 10, 2023

In reply to @colleenyoung "See more tips on how to use Mayo Clinic Connect in the Help Center https://connect.mayoclinic.org/help-center/" + (show)

yes, thank you. i saw that, but it doesn't say where to find the person to then click on their name to be able to send the message. do you just go to messages and put the @ persons name in and then it's supposed to come up? cause nothing comes up no matter who i put in the search bar

annewoodmayo | @annewoodmayo | Nov 12, 2023

In reply to @hral "yes, thank you. i saw that, but it doesn't say where to find the person to..." + (show)

HI hral,
I can't believe what you have had to endure!

I'm glad your face is doing better! I know that you have tried a lot of remedies already, but I'm going to add a few just in case they can give you some relief.

NO scents or fragrances or dyes in bath soap, laundry soap, skin lotion. (me)
Calamine lotion (my mother)
caladryl lotion (my sister)
Baking soda with water to make a mud pack. (my grandmom)
Straight olive oil (Old Italian lady trick)- yes, the stuff you cook with-- who knew?
maybe aloe, straight out of the plant.

As you probably know, you have to try any remedy on a small patch before putting a lot on the rest of your skin.

Boy, I sure do hope one of these old remedies is new to you AND gives you some relief! If you can stand trying yet one more thing...It gets so discouraging.

Itching can be worse than pain sometimes!!

hral | @hral | Nov 12, 2023

In reply to @annewoodmayo "HI hral, I can't believe what you have had to endure! I'm glad your face is..." + (show)

Hello Annewoodmayo,

Thank you for these! responses below in caps 🙂

NO scents or fragrances or dyes in bath soap, laundry soap, skin lotion. (me)
YUP...I USE THE "ACDS CAMP" APP AND IT TELLS ME WHAT PRODUCTS ARE SAFE TO USE BASED ON MY SPECIFIC ALLERGENS. IT'S AWESOME!

Calamine lotion (my mother)
YEEEAAA, HAVEN'T DONE THIS PROBABLY BECAUSE I HAD TO USE IT SO MUCH AS A KID THAT IT FEELS TRAUMATIZING. LOL...BUT I SHOULD TRY IT AGAIN

caladryl lotion (my sister)
THIS ONE IS NEW TO ME 🙂

Baking soda with water to make a mud pack. (my grandmom)
OOO...INTERESTING 🙂

Straight olive oil (Old Italian lady trick)- yes, the stuff you cook with– who knew?
LOVE IT! WILL TRY!

maybe aloe, straight out of the plant.
YUP I HAVE A PLANT IN THE KITCHEN...IT WAS THE ONLY THING I COULD PUT ON MY FACE DURING THE LAST EPISODE. 🙁

THANK YOU! I really appreciate holistic ideas.

annewoodmayo | @annewoodmayo | Nov 13, 2023

In reply to @hral "Hello Annewoodmayo, Thank you for these! responses below in caps :) NO scents or fragrances or..." + (show)

I'm so glad you found them interesting and not annoying. You know how sometimes you feel like you just don't want to hear yet another suggestion?

Funny- I didn't realize I gave "holistic" ideas. I think of them as "grandmom / old wives' cures" from the time before antibiotics and OTCs for everything!

Take care! 🙂

law59 | @law59 | Nov 14, 2023

In reply to @hral "Correct. 19 months of face and neck hives triggered by paxlovid that altered something in my..." + (show)

@hral

Correct. 19 months of face and neck hives triggered by paxlovid that altered something in my MCAS system. i have never had hives show up like this before. this is specific to the paxlovid trigger. i tried a 2 week dose of prednisone and it did nothing. I've tried all the basic MCAS stuff allergists tell you to try. then out of desperation, i did a 5 week course. that stopped the monthly cycle of recurrent face/neck hives. then after a couple of months with no hives, they came back being triggered by one of my numerous allergies. I refuse to take prednisone again. All that happens is weight gain unless I'm on massive doses. I'm still trying to get the 45lbs off me that Lyrica put on me in two months. What I need are answers, not band-aids. In an ideal world, someone out there is studying why Paxlovid is causing severe allergic reactions in the 1%ers...because they know it's happening because they warn about it on their website, but NO ONE is talking about it. It feels like everyone has been paid off by big pharma and I feel very alone. I need an MCAS expert and can't find one. I need someone who is studying this. I need to be heard and not brushed off. AGAIN. I've just been through another month of hives. I put glitter on my face at a parade and that set it off then after it healed i went out of town and it got triggered again....and i have no idea what triggered it. and i spent my "vacation" not sleeping, crying, and covered in ice packs. This is severely depressing.

I spoke with a dr at UMass who suggested a dermatologist at Emory to test for a more extensive list of allergens than I've been previously tested for to narrow down the trigger, but the Dr can't see anyone until July 2024. So another 9 months of hell. My PCP recommended an MCAS specialist, but they don't take my insurance so I'm trying to file for a waiver with my insurance. But my insurance doesn't have anyone on their roster that has experience with MCAS.

I don't necessarily think an EDS specialist would be able to do anything about this. They will just tell me to go see an allergist or dermatologist or MCAS specialist and then I will have waited a year, paid for travel and expenses and all for an appointment that produces no results. Now if someone said, "hey, i believe you. I know you know your body and have the lived experience of all this and I'm going to help you figure this out." I'd pack my bags right now.

I appreciate the links/articles. I'll look at them. If my response comes across with any kind of emotion, it's not directed at you...I'm exhausted on a level I never thought I'd experience. and that's saying something coming from someone with chronic fatigue syndrome. I appreciate you reaching out.

Jump to this post

Hi @hral. As a fellow EBV remission/post covid 2 yr person who appears to have similar past reactions, suggestion not knowing past posts🙃 , you may find helpful MCAS food lists on the web as I had to do while waiting for medical appointment/assistance. Know everything is beyond daunting and hopeful you can start with eliminating high histamine obvious foods you currently eat that will give you relief and then find your personal triggers for future prevention. 🌈

hral | @hral | Nov 16, 2023

In reply to @law59 "Hi @hral. As a fellow EBV remission/post covid 2 yr person who appears to have similar..." + (show)

Thank you for reaching out! I appreciate it. The thing that's been confusing about my experience with MCAS and these reactions is that my histamine levels keep coming back normal. So if the issue is with Prostaglandins, which are also involved with MCAS and hives, then i'm not sure if a low histamine diet would help much. That's why i've been reaching out to research doctors around the country.

law59 | @law59 | Nov 19, 2023

In reply to @hral "Thank you for reaching out! I appreciate it. The thing that's been confusing about my experience..." + (show)

Hi @hral. Totally understand those thoughts. My opinion is if so many of us test “normal” yet have symptoms, modifying food to see possible benefits and triggers an option. Spinach and cinnamon are my known triggers now and may change in this post covid journey🙃. Healing to you🌈

milliet | @milliet | Jan 10 8:05pm

I am so sorry to hear about hives, allergies and everything you are going through.
Thank you so much for posting about Paxlovid. I was just doing some research as I was thinking about taking it as I have Covid at the moment.
I took Clindamycin and had my first experience with full blown hives, about 7 years ago. I suffered for 5 years and no one could help me. About 2 years ago I found a doctor in California. She literally saved my life. She is now retired but still posts information. My doctor was a doctor that specialized in gluten disorders and celiac disease. I hope you can find the right doctor.
I still occasionally have hives but not like before. My vitamin b-12 was extremely low as well as my vitamin D3. I had to change a lot in my diet but it has been so worth it.
I can remember jumping in the swimming pool in the middle of winter because I was so hot from hives. Ice packs were my best friends.
I also kept a food journal so I could figure out my triggers.
I am thinking about you and praying you can resolve your issue.

sallyfromdavally | @sallyfromdavally | Jan 19 4:52am

In reply to @covidstinks2023 "God Bless You. I am praying for you right now. This looks miserable. My suggestion would..." + (show)

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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