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.

God Bless You. I am praying for you right now. This looks miserable. My suggestion would be to go to someone that deals with Long Covid (Long Covid Clinic), try another allergist, pulmonologist or maybe even a dermatologist to get their take on this. Have you tried Benadryl, Zyrtec, Benadryl cream or Hydrocortisone cream? Soaks in Aveeno Oatmeal soak just up to your neck? That is used to treat skin irritation & itching. I used it when my kids had the chickenpox. I used Corn Huskers Lotion (old remedy) when I had a terrible case of the hives one time and it did wonderful. It smells awful, but, it worked for the itching and swelling. I would try a small area to see how you respond. It took a while. Check with your functional medicine doctor before trying these please. I am so sorry this happened to you. Hugs & Prayers. I care. Please keep me posted.

REPLY
@covidstinks2023

God Bless You. I am praying for you right now. This looks miserable. My suggestion would be to go to someone that deals with Long Covid (Long Covid Clinic), try another allergist, pulmonologist or maybe even a dermatologist to get their take on this. Have you tried Benadryl, Zyrtec, Benadryl cream or Hydrocortisone cream? Soaks in Aveeno Oatmeal soak just up to your neck? That is used to treat skin irritation & itching. I used it when my kids had the chickenpox. I used Corn Huskers Lotion (old remedy) when I had a terrible case of the hives one time and it did wonderful. It smells awful, but, it worked for the itching and swelling. I would try a small area to see how you respond. It took a while. Check with your functional medicine doctor before trying these please. I am so sorry this happened to you. Hugs & Prayers. I care. Please keep me posted.

Jump to this post

Thank you for the kind words. I've tried it all. I have a lot of allergies, so I can only try products that are on my ACDS CAMP app safe list, which makes this all harder. So basically, I put ice packs on my face until the heat from the hives melts it and then I have to rotate it out. Which means I'm not sleeping either. I appreciate the suggestions. Thank you.

REPLY

Sorry that you're going through all this ... my only comment is that from my experience, and from what I read on this forum, most of the doctors we see are just stumped. Research is scanty, this is all new to them (and us), and the reaction from doctors seems to be either "I can't help you," or even worse: "No one else has reported this", or even worse(r?) ... "Maybe you need a shrink..." Also, the LC clinics are few, far between, and hard to get into. It's very hard to be patient while feeling so sick... this forum helps me keep my spirits up, more or less, after seven months of LC. Good luck to you.

REPLY

Tollovid is NOT a "supplement version of Paxlovid". Your statement suggests they are the same or similar and they are not. Paxlovid acts by decreasing the ability of the virus to replicate, thereby allowing your immune system to "kick in" before there is a covid swarm (also why Paxlovid is prescribed in the early stages of covid). Tollovid is a proprietary blend of plant extracts (companies' text) that they believe helps boost the immune system. It is also not without side effects or medically tested (which is true of most supplements). Like most supplements, it probably won't hurt to try it, but it does not decrease the ability of the virus to grow.

REPLY
@janeaddams

Sorry that you're going through all this ... my only comment is that from my experience, and from what I read on this forum, most of the doctors we see are just stumped. Research is scanty, this is all new to them (and us), and the reaction from doctors seems to be either "I can't help you," or even worse: "No one else has reported this", or even worse(r?) ... "Maybe you need a shrink..." Also, the LC clinics are few, far between, and hard to get into. It's very hard to be patient while feeling so sick... this forum helps me keep my spirits up, more or less, after seven months of LC. Good luck to you.

Jump to this post

Thank you for sharing your perspective in the kind, respectful light of what even the medical professionals suffering from long covid convey on this forum. We are all impacted differently and our individual bodies react to all types of assistance differently. Time and finding the supportive help here for each of is invaluable🌈

REPLY
@kayabbott

Tollovid is NOT a "supplement version of Paxlovid". Your statement suggests they are the same or similar and they are not. Paxlovid acts by decreasing the ability of the virus to replicate, thereby allowing your immune system to "kick in" before there is a covid swarm (also why Paxlovid is prescribed in the early stages of covid). Tollovid is a proprietary blend of plant extracts (companies' text) that they believe helps boost the immune system. It is also not without side effects or medically tested (which is true of most supplements). Like most supplements, it probably won't hurt to try it, but it does not decrease the ability of the virus to grow.

Jump to this post

@kayabbott, you're quite right that Tollovid is not a supplemental version of Paxlovid.

In fact, the FDA issued a warning to the makers of Tollovid about their unsubstantiated claims.
– Seller of Tollovid Supplements Warned for COVID-19 Claims https://www.fda.gov/inspections-compliance-enforcement-and-criminal-investigations/warning-letters/todos-medical-ltd-aka-todos-medical-usa-inc-626258-11072022
The FDA’s warning letter states that the company promoted its Tollovid supplements to prevent or treat COVID-19 using false claims.

For everyone, please note that supplements are not closely regulated as drugs are. When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks, and evaluate the product claims made by the producers and/or sellers of supplements, natural products and other alternative medicines with a critical mind. Here's more information from Mayo Clinic on evaluating supplements:

– Supplements: What you need to know: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/supplements-what-you-need-to-know

REPLY
@hral

Thank you for the kind words. I've tried it all. I have a lot of allergies, so I can only try products that are on my ACDS CAMP app safe list, which makes this all harder. So basically, I put ice packs on my face until the heat from the hives melts it and then I have to rotate it out. Which means I'm not sleeping either. I appreciate the suggestions. Thank you.

Jump to this post

@hral, I'm sorry that you are not getting the answers that you need from your doctors. You might consider consulting with the EDS specialists at Mayo Clinic and the Mayo Clinic Ehlers-Danlos Clinic. Learn more here:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

This article might provide more insight:
- Mast Cell Activation in Ehlers-Danlos Syndrome https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/mast-cell-activation-in-ehlers-danlos-syndrome/

Am I reading correctly that you've been dealing with this severe reaction since May 2022? Did you stop prednisone?

REPLY
@colleenyoung

@hral, I'm sorry that you are not getting the answers that you need from your doctors. You might consider consulting with the EDS specialists at Mayo Clinic and the Mayo Clinic Ehlers-Danlos Clinic. Learn more here:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/

This article might provide more insight:
- Mast Cell Activation in Ehlers-Danlos Syndrome https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/mast-cell-activation-in-ehlers-danlos-syndrome/

Am I reading correctly that you've been dealing with this severe reaction since May 2022? Did you stop prednisone?

Jump to this post

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.

REPLY
@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

I understand the frustration and the desperation. It is hard to imagine your exhaustion living with CFS, not being able to sleep and dealing with this persistent allergic reaction.

I know you are looking to talk to others who have made similar experiences. Some members have talked about allergic reactions related to COVID, albeit not necessarily to Paxlovid, in these discussions:
- Newly developed allergies, excema in ears
https://connect.mayoclinic.org/discussion/newly-developed-allergies-excema-in-ears/
- Post COVID skin conditions: What can I do to control the reactions?
https://connect.mayoclinic.org/discussion/post-covid-skin-conditions/
- Post covid itch and hives
https://connect.mayoclinic.org/discussion/post-covid-itch-and-hives/
- Post COVID-19 skin reactions: anyone else?
https://connect.mayoclinic.org/discussion/covid-19-skin-conditions/

Venting and being emotional is a-okay here. You've got a lot going on and finding answers is really hard work.

REPLY
@colleenyoung

I understand the frustration and the desperation. It is hard to imagine your exhaustion living with CFS, not being able to sleep and dealing with this persistent allergic reaction.

I know you are looking to talk to others who have made similar experiences. Some members have talked about allergic reactions related to COVID, albeit not necessarily to Paxlovid, in these discussions:
- Newly developed allergies, excema in ears
https://connect.mayoclinic.org/discussion/newly-developed-allergies-excema-in-ears/
- Post COVID skin conditions: What can I do to control the reactions?
https://connect.mayoclinic.org/discussion/post-covid-skin-conditions/
- Post covid itch and hives
https://connect.mayoclinic.org/discussion/post-covid-itch-and-hives/
- Post COVID-19 skin reactions: anyone else?
https://connect.mayoclinic.org/discussion/covid-19-skin-conditions/

Venting and being emotional is a-okay here. You've got a lot going on and finding answers is really hard work.

Jump to this post

The work of finding answers is NOT only hard work but a FULL TIME JOB.

REPLY
Please sign in or register to post a reply.