Sunday, April 18, 2021

Confirmed: I'm allergic to an ingredient (PEG) in the Covid vaccines

Hey party people--just like everyone else, I was so relieved and excited when we heard that we had several vaccine options when the announcements came out. However, I had a sneaking suspicion that my special talents as the Food Allergy Queen could mean a possible allergic reaction to the Covid vaccine. I got tested by my awesome allergist team last week, and it was confirmed I'm allergic to polyethyline glycol (PEG), which is a common stabilizing ingredient in these and many other vaccines. PEG is in both Pfizer and Moderna vaccines, and Johnson & Johnson contains polysorbate 80, which is chemically similar and would likely also cause a similar reaction.

Reactions so far from friends and loved ones have been mixed:

"Oh shit!"
"I'm so sorry"
"Will you still get it?/Can you skip the vaccine?"
"What a pain"
"I'm so glad you have a viable plan"

Personally, I'm on the "Grateful, and glad I have a viable plan" path! Yay science!

Today someone asked me, how did I know to get tested? Here was my thought process:

- For me, a person who is prone to allergies anyway (the medical term is atopic) it's always a possibility

 - I've had allergic reactions to a range of medical ingredients previously throughout my life--on top of the skin, as well as under it (rubbing alcohol, oral antibiotics, general anesthesia). So far, no medication allergies, surprisingly. Also I react to toiletries and some supplements, because of the filler ingredients (dairy, rice, mysterious chemicals)

 - But the biggest flag for me is that I had a reaction to a flu shot years ago (fatigue, brain fog, anxiety) for a full 30 days following it. In the old days flu shots included egg--they now have #eggfree versions. But I'm allergic to chicken, not egg (I know I'm a weirdo) and I never got tested for that reaction, even though I'm high risk for the flu due to my accompanying asthma. Despite that I just never went back for another flu vaccine.

[Note: the slow, delayed reaction is also sometimes labeled an "insensitivity"--medically it's an IgG reaction. The immediate anaphylaxis version is IgE. This article was helpful to clarify between the two. I have experienced both types of reactions. Woo.]

With those red flags in mind, and noting that the first cases of anaphylaxis were with people who already brought their epipens, I've been waiting for data to come in! I've kept up on the latest news about anaphylactic reactions globally (check through my Facebook page, that the likely allergen was identified as PEG, and the allergy community's preparation for reactions. (Thank you internet and the openness of the global medical community!) I did some research and found a cutting-edge allergist in the area, Columbia Asthma & Allergy. They not only knew about this already, but offered PEG testing. Yay! I submitted all my former allergy test results and connected them to my previous allergist for records and such, and skipped my daily antihistamine (Claritin) for four days prior to get a "true" reaction.

PEG Testing day

I was told to plan for the appointment to be a few hours, be hydrated, and have a light meal before. To bring my own snacks, and if I was working they could set me up with a desk. 

The room they brought me to had lots of cleaned surfaces, and best of all, an attached bathroom! (I'm neurotic that if I'm going to throw up or something I won't get to a bathroom in time.) They paid attention to my briefing notes that I am allergic to alcohol, so disinfected with a non-alcohol cleaner.

When I expressed deep thanks, the nurse smiled and said "WE'RE YOUR PEOPLE!" 

This is also known as a Miralax test or Miralax challenge, because PEG is not only in vaccines, it's a key ingredient in the laxative Miralax. The plan was to start with a baseline scratch test of the PEG, then over the course of the next few hours, challenge my tolerance levels to determine a good course of action. Ready? READY. 

I read this handy dandy little chart to learn some more tips while I worked some more and waited. 

I reacted to the first test within 15 minutes

I felt suddenly woozy, my skin started to itch all over and my visible arm skin started turning red. (I wore short sleeves on purpose!) They asked me to describe how I felt to document it. After about 10 more minutes, I started to get a specific sinus headache between the eyes that felt like the beginning of a migraine, and the doctor who came in said "yes, that's very common for a PEG allergy". He decided to quickly give me two quick dissolve Claritins and 600mg of ibuprofen for the headache. Then they stopped all the rest of the planned testing because I had clearly very low tolerance.

The doctor asked if I'd had a colonoscopy, which I had, and asked if I had had a similar reaction because PEG is prevalent in what's euphemistically called the prep materials. I had to think back on it a bit, but since my focus was bathroom related (Colon Blow jokes here), I don't really recall. I think I would've remembered this headache, though.

Sensitive to a PEG allergy. What next?

This allergy team is ON IT. To prepare me to get the vaccine, they will schedule me for a full 8-hour day of immunotherapy--the same concept as allergy shots. But instead, building my resistance in one day to PEG long enough for me to tolerate a shot, then I need to schedule my vaccine that day or the next morning. It CAN be done--they've already done this process successfully 4x!

Washington state just opened up the vaccinations to anyone 16+, so availability shouldn't be an issue by the time their team is ready for me in May. It takes a week for the custom medication to be compounded. Lots and lots of planning and backups involved. I had already updated my epipen (actually Auvi-Q) prescription as well. Note, that if you deploy an epi for life-threatening anaphylaxis, it only lasts for 20 minutes. Which is why they recommend you bring two, just in case it takes more than 20 minutes to get to a hospital. And you should always go to a hospital if you deploy your epi, because some reactions can happen later.

Take a buddy

As I thought this through, I realized I needed a vaccine buddy, just in case I needed help with my epi and to possibly drive me to the hospital afterwards. And then drive me home. If everything goes fine, then I have a pal there anyway to watch me, because some of the early indicators are things like surreptitious scratching (scratching without realizing it) or face swelling--and sometimes others notice before you do.

Whew. It's a lot of planning. But as I said at the top of this piece, I'm relieved I know what's going to happen. And grateful I have a plan of action, since with my mild asthma I am vulnerable to lung diseases in general, so skipping this is not an option,  Knowledge and planning is your friend. 

Depending on the severity of an allergic reaction, the CDC recommends only one shot

If you deploy an epi or go to the hospital, they don't recommend a second shot. If you have lesser reactions like hives, or wheezing, they don't recommend a second shot, and you and your doctor may need to evaluate the risk going forward.

Whew. This is a lot. Feel free to leave comments or questions. Facebook is better since I check it more often and people can see discussion threads.

More to come, thanks for listening. The FAQ

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