Tolvaptan tales: Two years later

Wow! It has now been two years since I started taking tolvaptan, a drug that is meant to slow the progression of polycystic kidney disease (PKD). I can’t believe how my experiences with it have changed over these two years as I’ve grown accustomed to the side effects and the day-to-day routines I’ve developed.

This post is intended to share my experiences for my own personal reflections, but I hope that it will serve as an information starting point for others. However, please remember that your experiences may vary.

For my other tolvaptan updates, check out these posts:
Talkin’ tolvaptan (A layperson’s explanation of tolvaptan)
Tolvaptan tales: The beginning (My first month’s experiences)
Tolvaptan tales: A four-month reflection
Tolvaptan tales: A one-year review
Tolvaptan tales: Two years later
Tolvaptan tales: Four years on
A generic tolvaptan update (A six-year review)

Disclaimer: I am not a medical professional nor do I have any professional health or fitness qualifications. This post is about my own personal experiences with taking tolvaptan for PKD. It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.

The stats

Dose: I am on the top dose of tolvaptan, having moved up quite quickly in the first six weeks of taking the drug. That means I take 90mg in the morning and 30mg in the afternoon.

eGFR (kidney function, ish): I am pleased to say that my eGFR has been fairly stable. In the last year, my overall levels have gone up a bit, putting me at 60+ on most of my readings. I did, however, have a dip in February with a reading of 42. This was during a very stressful time in my life (PhD viva!!) and also coincided with a pretty nasty cold and a time when I wasn’t eating well (due to the stress and illness). Two weeks later, I was back at 60+ and my doctor was happy to write off the lower eGFR as a fluke.

*A note on eGFR: the “e” stands for estimated! Many factors can cause a dip in the numbers and that doesn’t necessarily mean a decline in kidney function. So, try not to worry if you get a seemingly low reading as it could be a fluke. It is more important to look at trends over time. If you are concerned, speak to your doctor about your individual status.

Liver tests: All of my liver test values have been happily within the normal range, save for a one-time blip in my first four months on the drug. Whilst I am pleased with this, I also know that I am sometimes worried about the future of my liver. However, that worry is based on personal fear and not medical concern. (Although I do limit my alcohol consumption, just in case!)

Timing of pills

Tolvaptan is taken twice per day: once in the morning and once about eight (8) hours later. The first pill is taken on an empty stomach, after which you aren’t meant to have food or beverages (other than water) for 30 minutes.

In my first 6 months on the drug, I settled into a 6 am and 2 pm routine. At first, I kept my morning pill by my bed so that I could take the pill and go back to sleep for a short while. I have now changed my habit a bit more so that I can make the most of my mornings.

My morning pill is now left in a small dish on the kitchen counter and my alarm clock is set for 5.30 am. When the alarm goes off, I hit the snooze button but also get out of bed to walk to the kitchen for my pill. By the time I am back in my bedroom, my body is awake enough to not fall back to sleep. Instead, I use that time to do some morning stretches and check my various social media accounts. (But just in case I do go back to bed, that snoozed alarm will wake me up again.)

This new morning routine means that I almost always get out of bed before 6 and that I get my morning stretches in bright and early. By the time they’re done, I can return to the kitchen to make my coffee (which takes a few minutes). I have the timing down well enough that I am ready to take that first sip of (heavenly!) coffee spot-on 30 minutes after my morning pill.

My afternoon pill is always at 2 pm, even if I’ve taken the morning pill slightly earlier. This way, I do not have to re-set my alarm each day based on the morning timings.

Skipping pills

Over the last two years, I have found that it is best to skip my pills on occasion. The reasons I skip the pills vary. It might be that I am going out with friends and I know I will be drinking (too much) wine. Or maybe I am taking a long flight. Or maybe I am going on a fairly long adventure walk in the wilderness. Or maybe I just need to feel normal for a few days. I also skipped my pills for a couple of weeks as I finished up my PhD thesis so that I could focus completely on writing without worrying about anything else.

I am not advocating for a willy-nilly pill-taking routine. But it is possible to miss out on a few pills here and there when you need to. There are no side effects from skipping tolvaptan on occasion, but do remember that the longer you take it, and the more regularly you take it, the better your overall outcomes of the drug will be.

Hydrating and urination

When it comes to tolvaptan and fluid intake, what goes in, must go out. And there is a lot of fluid going in when you’re on tolvaptan! I have shared before that I tend to “front load” my fluids by drinking much of my fluids during my working day (typical 9-5 office hours, mostly). This way I am only sipping water in the evenings and I can generally sleep from 10 pm until after 5 am – which is perfect for the timing of my morning pills.

Most of my fluid intake is water and peppermint tea. However, my diet includes a lot of hydrating foods, too such as fresh fruits and vegetables and (low sodium) broth-y soups. I find that this helps to keep my thirst at bay quite well. In fact, the more fresh produce I eat, the less thirsty I feel. I have also found that an occasional ice lolly helps to quench my thirst in the evenings. (But those are empty calories, so I try not to rely on them too often.)

During the day when I am drinking most of my fluids, I am generally able to (comfortably) go about 2 hours without needing to urinate. If I am a bit more judicial in my drinking, I can easily go 3 hours. This, of course, is important when I am out in town relying on public facilities. In fact, when I am going to be away from home or my office for any period of time, I will think quite carefully about where any public facilities are on my journey. I will also plan out when (and if) I will stop for a snack or a meal at a café, just so that I can use the facilities.

However, as mentioned above, as my fluid intake decreases in the evenings, I can generally manage a solid 6-8 hours of uninterrupted sleep. And that is very nice!!

The reflective bit

Overall, there hasn’t been much change in how I’ve fit tolvaptan into my life between this year and last. However, I do find myself wondering more and more about how it’s working; about if it’s working.

Unlike some medical treatments, there are no clear markers to indicate if, in fact, tolvaptan is slowing down the progression of my kidney disease. Whilst the studies show that, on average, the drug can slow things down by about 30%, that is all based on statistical models that consider large datasets. Don’t get me wrong: Large datasets are a good thing as it shows that, in the main, things work. But (and maybe this is the qualitative researcher in me talking) it doesn’t consider individuals. And there really isn’t a way to test things at the individual level because we don’t know someone’s actual rate of progression is/was, so we can’t know for certain if it’s slowed and by how much.

For me as an individual, that means that I don’t know if the drug is working for me in any meaningful way. If I am in the statistical norm, then these two years may have given me a tad over seven extra months before I enter kidney failure. But I might be on one side or the other of the statistic. So maybe I’ve only “earned” two extra months, or maybe I’ve won the tolvaptan lottery and I’ve gotten 11 extra months out of the deal. There doesn’t really seem to be a way of knowing.

And so, I must take it on faith. Faith in the science that says it will slow the progression by 30% (on average), and faith in the non-science things that says “have a bit of hope, and trust that this is better than nothing”.

This uncertainty leaves me wondering how long I’ll take the drug. Sometimes I wonder if it’s worth it, given the side effects and the occasional sleepless night when I don’t get my hydration right during the day. On those days, I find myself thinking that it’s a bit pointless and that maybe I should stop taking the drug and just keep as healthy as possible without it.

But then I find myself thinking that I could use the same arguments in a car: Don’t wear a seatbelt; instead, just drive carefully so that you don’t get in a wreck. And that is just silly because we all know that accidents happen for many reasons, and don’t necessarily have anything to do with your driving skills (other drivers, mechanical errors, wildlife, etc).

So, for now, I will keep taking tolvaptan. It hasn’t had a negative impact on my life, and it might well have a positive impact. And with luck, there will be something even better for the treatment or cure of PKD for future generations.

Disclaimer: I am not a medical professional nor do I have any professional health or fitness qualifications. This post is about my own personal experiences with taking tolvaptan for PKD. It is meant as an informational starting point – not as medical advice. Please consult your medical team if you have any questions or concerns about your own health.