Sunday, June 16, 2024

Trials and Tribulations

There were some Philly and cross-country adventures that I will have to come back to, but the big reason for being in the Lower 48 for May was the RECOVER Clinical Trial. As the literature says, "Together, we can explore options that may help improve Long COVID symptoms." There are five trials happening, and I was sorted into a drug trial. Fear not, the drug in question is Paxlovid, already FDA approved. The hypothesis behind this trial is that some long covid symptoms are caused by remnant virus lurking in our bodies. So, dose with Paxlovid and knock it out. The usual prescription for the drug is five days. In my cohort there were three options:

  • 25 days of Paxlovid
  • 15 days of Paxlovid, 10 days of placebo
  • 25 days of placebo
These options were randomized (all participants traded in their drug boxes on Day 15, so you really didn't know). They say will let us know next year after the results are analyzed what we actually got. However, a 25 day does of Paxlovid is unusual. During this trial they drew blood (19 vials, again) four times. In part, to monitor liver function to make sure the drugs weren't causing organ distress. With all the blood draws and testing appointments, we needed to stay in the Seattle area the whole month.

Paxlovid is actually made up of two drugs - Nirmatreliv and Ritonavir. Just to make things extra fun, the second drug is the one that causes a brunt, tarry, melted plastic taste in your mouth. And while only 6-8% of users get that taste (tho everyone I've ever talked to has had it), we all got that drug so everyone would take the study seriously and take all the drugs. It was seriously gross. The bad taste did not fade or go away for the entire dosing period. And at the end of it the clinicians warned that it could take an additional 38 days for it to fade. Luckily, I was clear 24 hours after.

On the other hand, there are a lot of side effects associated with Paxlovid. I have to be honest and say I'm pretty sure I'm in group 1 or 2 because taking the pills made me super sick. I'm not going in to all the details, but suffice it to say, ick. I had hoped to spend more time visiting friends and family during the month, but my energy did not allow for much.

Dosing is now complete, but the trial continues through November. I will return to Seattle in August for more testing, and continue to fill out my weekly questionnaires. 

The question now is: did it help? I don't know. I feel so much better being off the drugs that it could just be a rebound effect. I was feeling better before the trail, which made it hard to take such a swift dip down. But I'll keep you posted!