Lessons from Prednisone
This morning, I woke up and took my last dose of prednisone. Prednisone is a corticosteroid that’s used to treat a variety of illnesses like asthma, autoimmune conditions, or adrenal issues, among many other things. Some people will be on it for a short time, like a high dose for 5-10 days to help your body kick an infection, and some will be on it for life, supplementing their body’s natural ability to make cortisol (or lack thereof).
I was put on prednisone in June of 2024. In December of 2023, I got COVID and then developed post COVID pericarditis. The sac around my heart was inflamed. When I saw my cardiologist for the first time about it, he said I should be able to clear it using a combination of NSAIDs and a prescription with minimal side effects. After I failed that treatment twice, and my pericarditis returned for a third time, it was time to try steroids.
My time with pericarditis, including my time on prednisone has been a series of disabled dilemmas — ones where I’ve had to abandon some needs to meet others.
My POTS is managed partially by medication and partially through eating a lot of salt, staying hydrated and exercising as I’m able to. With pericarditis, you’re supposed to reduce your salt intake significantly and not exercise while your chest actively hurts. Before I got COVID in December 2023, I was exercising almost daily, doing Pilates, swimming and walking. I haven’t been able to do nearly the same amount of movement for more than a year, causing serious deconditioning. The deconditioning means that my heart rate is constantly much higher than it should be and my swings are bigger. It also means I have significantly increased fatigue. My capacity has been greatly diminished by trying to do this treatment.
This all started because of a COVID infection. I’m doing what I can to avoid another infection including masking, using air purifiers and only being unmasked with other people taking precautions after molecular testing, to name a few. But I can’t get vaccinated. For all of the vaccines available in the US, pericarditis is a possible side effect. To make matters worse, prednisone suppresses your immune system. I’m so grateful the mitigation strategies I’ve been using worked and I didn’t get COVID while I was on prednisone, and it still looms large as a possibility. Although I had other chronic illnesses before this bout of COVID, I didn’t have any heart problems. Now, this is something I have to continue to watch out for.
Prednisone is a tough drug. Although it’s taken away my pericarditis, it’s given me low iron, fatty liver disease and eye issues. It brought significant, quick and uncomfortable weight gain. It made me angry in a way I haven’t been before, like my only possible reaction to any new stimuli was anger.
Early in the pandemic, deconditioning this much was my nightmare. I did everything I could to protect myself and still, less than 5 minutes outside without my mask on changed everything. It changed my capacity and forced me to take medical leave to recover. It deepened my immunocompromised status and along with it the necessity to be firm in my boundaries and values. It took so much time with people I love. I missed weddings, birthdays, casual friend time and events.
I will likely spend a year or more working back to my baseline before pericarditis. Unless I get COVID again or my pericarditis recurs or something else goes majorly wrong, which unfortunately is not out of the realm of possibility.
I have had COVID 3 times — once I got it from my physical therapist through our masks, once from a family member who did not disclose recent unmasked travel, and this last time from taking my mask off away from other people at an outdoor event. A child about 20 feet from me coughed and I think that’s how I got it.
As we continue to descend into the depths of fascism, you have a choice. You can choose to be complicit and continue to live your lives unmasked, not caring about disabled people around you. Or you can show your solidarity and put your mask on. Anyone can become disabled at any time. Trust me, now is not the time you want that to happen. With threats to the ADA, Medicaid, Section 504 and other systems that support disabled people, there will be even fewer resources available in the coming years.
If you’re reading this post and you’re already disabled, whether it was from COVID or not, know that I am here for you as a resource. Without judgement of how you arrived here and with a lot of let’s figure out how you make a home here in the land of the sick energy.
The biggest lesson I’ve learned from my time on prednisone is one I have learned over and over again as a disabled person. We are all dependent on each other for survival. Which is both a huge responsibility and a huge gift. My actions impact everyone around me and everyone around me’s actions impact me. I know I want my impact to be breaking chains of transmission, fighting for people around me to have access to do the same and welcoming those who weren’t able to prevent infection into disability with open arms.
And to hopefully do all of that with a healthy heart.