My experience with Dexamethasone.

I wanted to put in my two cents on the discussion about President Trump and Dexamethasone. A number of people have argued that Trump should invoke the 25th Amendment and temporarily turn over powers to Pence while he's on Dex. I think that's not an unreasonable position, but it does involve a judgment about the risk of the rare but serious side effect of psychosis (spare me the "how would you know?" jokes). In the spirit of contributing to that conversation, I want to talk about my own experience with Dex.

First, the standard dose of Dex for Covid patients is 6mg/day for up to 10 days. That is NOT a huge dose, trust me. When I was getting in-patient chemo, I was on 40mg/day for all five days. As part of my out-patient medication combos, I was on 40mg once per week. I've also been on low dose Dex, like 4mg once per week, and that's almost not noticeable. I also had 4mg or 6mg administered via IV as part of some of my infusion therapies (in addition to then having the 40mg by pill later in the week).

So with that in mind, here's what 40mg orally per week was like for me. There were three main side effects: insomnia, high blood sugar, and near-manic energy and focus. That dose of Dex takes about 36 hours to run through your body, and it takes about 8-10 before the effects really hit. So I learned to take it right before bed, which got me sleep that night. The NEXT night, however, I was often up for good at 3 or 4am. And when I woke up, I was AWAKE. (Side note: IV Dex goes through your body a little more quickly, and that is probably what Trump is getting, though I don't know for sure.)

The blood sugar is a serious issue. For me, it was enough to treat me for steroid-induced diabetes. Before I got the right insulin dose, it was not unusual for my sugar to be in the 300s or worse two hours after eating, and still well into the 200s first thing in the morning during that 36 hours period. (Normal would be under 200 for the former and 60-100 for the latter.) Insulin helped, but on Dex days, I still ran really high. Thankfully, I'm off the Dex now and my sugar is normal and I'm also off insulin. But that's some dangerous stuff. When I was having the super heavy doses in the hospital, I had my sugar checked before every meal and before sleeping, with an insulin booster on top of my long-lasting daily stuff if needed, which was almost always the case. This, for me, was the scariest part of the Dex.

The manic energy/focus was incredible. I get why athletes take steroids. I was a grading and writing machine. I also didn't shut up (again, spare me the "how would you know?" jokes). I was probably a little more irritable than usual, but in no sense of the term was I incapacitated or unable to make major decisions. Annoying? Absolutely. Incapacitated? No. Even on the super heavy doses in the hospital, I was always in control of my faculties.

I will say, however, that being cooped up in a hospital room and also taking 40mg of Dex per day is a bad combo, especially if the patient is an extrovert. You do feel like a caged animal.

If Trump is getting the standard 6mg/day dose, that's a solid dose but it's not super heavy. It certainly is enough to explain his tweet storm from this morning and, probably, his irresponsible and dangerous desire to go out in the Covid-mobile yesterday. But that behavior isn't that out of character for him and, at least based on my experience, seems consistent with the dose of Dex he's taking. If the standard dose was more like my in-patient chemo dose of 40mg/day, I think the argument for turning over powers would be much stronger. At 6mg/day, it's a harder case to make. Again, all of this is with the caution that I'm a patient not a doctor.

I should add that my heavy Dex use probably contributed to my cataract issues. Long-term steroid use has all kinds of side effects, though these won't be a problem for Trump. It's also why I'm very happy that my current oncologist has not included Dex as part of my current maintenance combo.

The other thing about Dex is that it works. It boosts the effectiveness of chemo and other anti-cancer medications. It works as a pain reliever (on Dex days, I felt like I could move buildings). It reduces inflammation. And it has shown to be effective in treating Covid. Like almost every medication, it has risks. But there's a reason it's so commonly prescribed: it is effective and generally very safe.

I hope this is a helpful addition to the conversation.