Monitoring Porphyria Symptoms After My 1st COVID-19 Vaccine Shot

Claire Richmond avatar

by Claire Richmond |

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It was an average, restless morning, when time was meaningless and elusive. With the muted glow of streetlights peeking through the shades, it could’ve just as easily been 1 a.m. as 6 a.m. I wasn’t sure I had made it all the way to sleep.

My feet were uncomfortably warm and clammy, but a dip into the outside air at the end of my bed proved it was far too chilly to let them hang out uncovered. An annoying discomfort like this will typically coax me up on a morning my body is otherwise content to remain horizontal.

Glancing at the bright red numbers of my radio alarm clock, the same one my grandma gave me for Christmas in the mid-1990s, I saw it was indeed 6 a.m.

Vaccinated and it feels so good

A mere 15 hours earlier, I received my first dose of the COVID-19 vaccine with a great degree of trepidation. Acute hepatic porphyria (AHP) is a pharmacogenetic disease, so I am incredibly careful with any new drugs or supplements. Even drugs listed as “OK” on the American Porphyria Foundation’s Safe Drug List can be tricky, as there aren’t very many of us to report effects. So far, the vaccine seems to be tolerated by friends in the AHP community.

Checking in with myself through a body scan meditation, I explored sensations from head to toe. Was my restless slumber due to the vaccination? Did the shot aggravate my AHP or cause any other adverse effects?

Taking a series of deep, intentional breaths, I sought to uncover any mysterious and unfamiliar symptoms I could tie to the vaccine. However, besides some pain in my left arm, where the shot had been administered, the aches in my body were standard AHP fare.

If the second dose of the vaccine provokes my porphyria, I can take precautionary measures and am prepared to hold on tight. (Side note: Help the medical and patient community by reporting any adverse effects of the vaccine to the U.S. Centers for Disease Control and Prevention’s Vaccine Adverse Event Reporting System.)

Over the last two months, I’ve watched Iowa struggle to distribute vaccines, falling consistently to the bottom among U.S. states for the percentage of its population that’s been vaccinated. I watched as my friends in healthcare received their doses, then slowly, educators. Eventually, people in my life over 65 started receiving the shot, but at the time of writing, my 96-year-old grandma is not yet fully vaccinated.

Despite distribution challenges and access issues, most Iowa counties pushed forward with the next phase of eligibility on Monday, March 8. This included people over 16 with underlying medical conditions. My tier.

Like many Iowans with underlying health conditions, I called my primary care provider for more information about when I might be able to receive a vaccine. Confirming my suspicions that Polk County was behind in administering shots, the scheduler indicated that it would be April before a dose would be available to me. I hung up feeling satisfied; others at high risk in my community deserved an opportunity to get vaccinated. Besides doctors’ appointments, I don’t do much these days anyhow. I was ready to be patient.

Imagine my surprise when a call came through less than 24 hours later, indicating a dose was available for me that day. A vaccine that would presumably expire without an arm.

I’m not throwing away my shot

On Tuesday, March 9, I received the Pfizer vaccine and am beyond grateful. At the same time, I also feel frustrated and guilty to have received a shot when others with barriers to access have not.

I understand some people in the rare disease community waver over the decision to get vaccinated, worry about its safety, and speculate over side effects. Personally, I never questioned whether I would get the vaccine. Protecting myself and others around me was always more important.

I tell myself it would’ve been silly not to receive the shot when I qualified, and besides, I didn’t get it just for me. I got it for my grandma, my girlfriends, my neighbors, my nurses, my comrades in the chemotherapy suite who cannot receive it, and all those in my community who are being left behind.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

Comments

Marion Meyer avatar

Marion Meyer

Claire, your words are absolutely beautiful, stunning, emotional and an inspiration of HOPE. Hope is such an important emotion, yet we dont see that word often enough. You touched my heart. I live in South Africa, where not only did we receive vaccines which arrived did not cover the strain in SA. Others came, but not all our healthcare workers have been vaccinated yet. Im over 65. They have not started with any of the public yet. Im positive I had Covid in december, but even the available antibody tests are not accurate. Its crazy. Thank you for your wonderful words. I could see you and feel you.

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Claire Richmond avatar

Claire Richmond

Marion- I’m sorry for all you are enduring! What a frustrating and heartbreaking time for your community. I wish you continued hope and health as you hold tight. Thank you so much for reading, your perspective is invaluable.

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Anne-Marie avatar

Anne-Marie

Thank you for your article. I am 65 and work as an Event Safety Officer and need to take the Pfizer vaccine in South Africa. I was very concerned about porphyria but now I feel good about it. Thank you again

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Claire Richmond avatar

Claire Richmond

Anne Marie, thank you for reaching out. I hope all is going well with your porphyria and your vaccine! Thank you for reading. - Claire

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Tracey avatar

Tracey

thankyou for your article
My aunty,uncle and a few other family members suffer from variegate porphyria and it is not pleasant,
mine is a bit more severe than my other family members
there are days where it gets so hard, it took us a very long time to be diagnosed,it was quite frustrating,I was the last one to get tested and listened to,some doctors are so ignorant and don't believe that porphyria is a real thing! It's a real struggle especially when it affects everyone so differently.
I hope things get better for you thankyou again

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Claire Richmond avatar

Claire Richmond

Thank you for reading, Tracey! It can be frustrating and a struggle for sure. I find it fascinating when others with porphyria have it in their family, even between yours it sounds like symptoms can vary. Please keep in touch! - Claire

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VIKAS PERIWAL avatar

VIKAS PERIWAL

my wife is porphyria patient and medicine reaction or any problem in body effect her brain. did she take oxford astrazeneca vaccine (in india known as covishield). please answer

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