Severe Allergy to Paxlovid

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.

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

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

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!!

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.

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.

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. 🌈

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.

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.