Tossing aside the blanket, I stepped into the hallway. From there, I could see my partner folding laundry in the other room. “You were mean to me in my dream!” I said pointing at him flatly. “And now you can’t even kiss me to make amends.” My vivid and dramatic dreams are a running joke in our house. Last weekend, however, my nightmare was fueled by the pain and fatigue from COVID-19. The unexpected betrayal of a dream, above all else, was too much. I am fully vaccinated and remain vigilant to avoid infection, including wearing a mask indoors, however the latest variant of the COVID-19 virus, BA.5, is incredibly contagious. I locked myself in the bathroom and washed my hands with soap. While I had tested positive for COVID-19 and was sick for days, my partner was not. He still felt healthy and we intended to keep him that way. A few minutes later, I dried my hands and heard a knock on the door. “Put your mask on,” he said softly. When I opened the door, there he was, face covered and arms outstretched. Recommended reading I remember first learning about the symptoms of COVID-19 in 2020, along with the rest of the world. Body aches, sleep problems, brain fog — all fell right in the middle of a Venn diagram of the COVID-19 infection and an acute attack of porphyria. I used to joke that if I ever had COVID-19, I would probably think it was just acute hepatic porphyria (AHP). Of course, when my pain started, that’s exactly what happened. I will never know if the severity of my symptoms or my recovery time would have been affected if I had known to seek monoclonal antibody therapy early on. What I do know is that the virus caused a serious attack. Gastroparesis and nausea set in last Wednesday, keeping me from eating and drinking until the weekend. Not only did the symptoms make it difficult for me to distinguish between a porphyria attack and the onset of COVID-19, but the virus didn’t show up immediately in a rapid home test. I was bedridden for three days before a test finally revealed that it was COVID-19 that was causing my body to go haywire. It seems silly now to look back and think how I had never before experienced a raw throat and congestion during an acute attack of porphyria. After testing positive, I scheduled a telehealth appointment. From my bed, I propped the phone up next to me on a pillow so I could lie down while waiting for an urgent care doctor to join the call. I was mentally preparing for an appointment that would be one part educating the doctor about AHP and one part the doctor giving guidance. Seeking medical care when living with a rare disease requires self-advocacy, even when the appointment involves treatment for a virus like the one that causes COVID-19. Any substance that my liver processes could affect my porphyria and cause an attack, so it’s important for doctors to know that what they’re prescribing is safe. I’ve been lucky enough to usually have GPs who are both patient and curious. Once the urgent care doctor learned more about my condition and where I was with my COVID-19 illness, she was reluctant to recommend a course of action without my specialist’s consent. My initial discomfort with this disappeared when I learned that an antiviral pill often used to treat COVID-19 is not safe for patients with acute porphyria. “One of the drugs in Paxlovid is listed as unsafe on the NAPOS website,” Dr. Karl Anderson in a recent email, referring to the Norwegian Porphyria Center’s porphyria drug database. This database notes that the Paxlovid ritonavir component is not safe for patients with porphyria. Anderson is a gastroenterologist at the University of Texas Medical Branch at Galveston and a leading expert on porphyria. He recommends that people with porphyria take as many precautions as possible to avoid contracting COVID-19 and get fully vaccinated. If they do contract COVID-19, as I did, Anderson recommends seeking individualized treatment with their local doctor to avoid unsafe drugs. Like many people at high risk for serious complications from COVID-19, I was afraid of getting it. I’m disappointed that treatment options are limited for those of us with porphyria, but I’m also grateful that we’ve come a long way with what we know about avoiding transmission and preventing infection. When it comes to getting back into the world, I’ll continue to play it safe. Note: Porphyria News is strictly a disease news and information site. Does not provide medical advice, diagnosis or treatment. This content is not intended as a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified health care provider with any questions you may have about a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this site. The views expressed in this column are not his Porphyria News or its parent company, BioNews, and are intended to spark discussion about porphyria-related issues.
