I recently reached a weird milestone that no one likely cares about, but that I find fascinating: in the first 534 days of exocrine pancreatic insufficiency (EPI / PEI), I’ve taken more than 5,000 pills of pancreatic enzyme replacement therapy (PERT).
That’s an average of 9.41 pills per day!
PERT (enzymes) helps my body successfully digest the food that I eat, because my pancreas is no longer producing enough enzymes. Like insulin treatment for diabetes, PERT will be a lifelong necessity for me: this number of pills consumed is one that only goes up from here.
Here’s a look at what the pills per day intake has looked like over this time:
- Min: 2 (early days)
- Max: 72 (hello, outlier of two ultramarathons! One was 62 miles, the other was 82 miles! Other 30-40+ pill days are likely also ultra 🏃🏼♀️ training days, e.g. around 50k of running, which is still 8-9 hours of running and fueling every 30 minutes)
- Median: 8
Analyzing a graph of my daily PERT enzyme pills, there are noticeable spikes, particularly around my ultramarathon training days. Two distinct spikes at 72 pills per day correspond to my 100k (62 mile) and 82-mile ultra runs.
Why so many pills?!
Not everyone with EPI takes as many pills as I do. The number is titrated (adjusted) based on what and how often I eat. A typical meal for me requires 2-3 prescription pills of PERT.
In my case, I sometimes use over-the-counter (OTC) enzymes to ‘top off’ a prescription pill.
For hikes and runs, which I do 4-5 times each week, I eat small amounts every 30 minutes if I’m out for more than 2 hours, which is 3+ times a week. For a run of 5 hours, where I consume 10 snacks, I’d use 10 pills if I went the prescription route. In contrast, I usually use 2-4 OTC pills per snack, which combined costs an average of $0.70. That means $7 in enzyme costs for 5 hours compared to $80 if I had taken prescription PERT! Multiply times several times a week, and you can see why I choose this strategy.
Balancing Cost ($) and Convenience (Fewer Pills)
The “cost” for using OTC pills, though, is 20-40 pills ($7) instead of 10 pills ($80). On a day-to-day basis, my choice depends on convenience, how confident I am in my counts/dosing (I’m very confident for hike/run pre-portioned snacks that I’ve tested rigorously), and other factors.
Increasingly, when I’m not pursuing physical activity, I’m more likely to choose fewer pills at the financial cost of prescription PERT. I’d like to choose fewer pills for physical activity, too, which is why I’ve recently shifted to a slightly more expensive OTC pill that has more enzymes in it, in order to take 1 pill for most snacks instead of 2-4. In a typical long run of 4 hours, for example, instead of 7 snacks resulting in 28 pills, those 7 snacks would instead result in 7 pills! (There’s also a challenge with finding these particular OTC pills, as prescription pill shortage has driven more people to try OTCs and now the OTC pills I prefer are regularly out of stock, too. If you’re curious about using OTC pills with EPI, or prior to a diagnosis of EPI, you may be interested in this post where I describe in more detail using over the counter (OTC) enzyme pills for this purpose.)
Long run days are outliers in my pill count per day numbers and graphs. However, even if I skipped those and only took 8 prescription PERT per day, I’d still have consumed over 4,200 enzyme pills at this point.
EPI or PEI leads to a lot of pill-swallowing, regardless of whether you’re using over the counter enzymes or prescription enzymes.
But they work! Oh, do they work. My GI symptoms used to be most days a week and caused me to feel miserable (read about my experience getting diagnosed with EPI here). Now, I rarely have any symptoms, and when they do occur (likely mistiming a dose compared to what I was eating or taking not quite enough to match what I was eating), they are significantly less bothersome. It’s awesome, and I feel back to “normal” for me well before all of my GI symptoms started years ago! So yes, I have to swallow many pills a day for EPI but my symptoms are completely and regularly managed as a result and my quality of life is back to being what it was before.
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If you’re curious to read more about my experiences with EPI, or posts about adjusting enzymes to match what you’re eating, check out DIYPS.org/EPI for a list of other EPI related posts.
If you have EPI and have an iOS device, you also might be interested in checking out PERT Pilot, a free iOS app to track food intake and PERT dosing and outcomes.
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You can also contribute to a research study and help us learn more about EPI/pEI – take this anonymous survey to share your experiences with EPI-related symptoms!
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