A patient takes things into her own hands and weans herself off steroids

I am really hoping this turns out to be a once in a 100-year pandemic so that I can tell future generations I was here to see it. And as long as I continue to go to the chicken shop and local supermarket in wrap-around plastic goggles, N95 mask, vaccinated and sanitising, I am hoping to still be around to do so. But, more likely, there will be another virus and another annual vaccination or two.

If I saw me three years ago, I would have judged myself as a germophobe who was really overreacting, but in 2022, people just nod wisely at me, as if to say, “Yes – can’t be too careful!” Recently, I saw a patient who came in wearing goggles with an attached mini face-shield that they bought online, and I am waiting for mine to arrive by mail.

Not everything is COVID-19, but it just seems to find its way in, even when it isn’t about the virus. And there was a time when expats made their way home from the pandemic in their part of the world, struggling to make sense of it all, to a eutopia in our part of the world with no COVID-19 at all. Alas, no longer, but it was really good while it lasted, wasn’t it?

After long-term agitation and sleep deprivation, Lexie rebelled and weaned herself off the steroids in a week

I hadn’t seen Lexie for a couple of years as she had been based in North Carolina and New York City, helping to build her family business. Last year, there had been a business exemption opportunity for double-vaccinated Lexie to return home, but the only flights available were a little pricey at $39,000 return, so Lexie stayed in the US until early this year.

Her inflammatory bowel disease had not been well controlled – despite ustekinumab (and several failed biologics before that) and mercaptopurine, Lexie still required prednisolone 50–75mg daily on bad days. Her care was a hybrid of telehealth by her long-time local gastroenterologist and a New York City gastroenterologist, who were both happy to work together.

Prednisolone is highly effective in an acute setting, but after long-term agitation and sleep deprivation, Lexie rebelled and weaned herself off the steroids in a week upon her return home.

When I saw her at the surgery, she was exhausted. Despite lisdexamfetamine for attention deficit hyperactivity disorder and desvenlafaxine for depression, Lexie could barely get out of bed.

A raft of blood tests were normal (see table, 28 January 2022), and we toyed with the idea of going back on the steroids and weaning more gradually, but Lexie refused.

Then, her family all got COVID-19. With her parents fully vaccinated, their illness was mild despite being in their 60s. Did I mention that Lexie was double vaccinated last year? But she had somehow just not got around to getting the booster.

So, when Lexie emailed me a picture of her most dramatic jaundice, we worked out a way to get COVID-safe blood tests done. The results were equally dramatic (see table, 18 February 2022).

I sent Lexie for an abdominal ultrasound, which was completely normal, ruling out obstruction

We also briefly discussed going to hospital as COVID related jaundice carries a high mortality rate (if it was indeed COVID-related jaundice, but time was not on our side). However, Lexie was coping at home and declined.

The gastroenterologist ceased mercaptopurine, advised Lexie to delay the next dose of ustekinumab and commenced prednisolone 25mg daily.

We all held our collective breaths, and as dramatically as Lexie became jaundiced, she recovered. Her sclera returned to normal, as did her blood test results. The gastroenterologist suggested reducing the prednisolone on a much more gentle gradient of 5mg a week, and Lexie agreed.

Now Lexie is gradually digesting a wealth of COVID-19 information and pondering the best time for her booster!

Patient consent was obtained to share this case study, and details have been changed to protect patient confidentiality.

Jonathan Bentley is a GP in Double Bay, Sydney, NSW