A generic tolvaptan update

My six-year update isn’t far off my four-year update. So, I will send you there for the general details of my life on tolvaptan. Instead, I will just highlight the differences. And really, there is not much to say about the difference.

As always, I am sharing this update to help others seeking information about taking tolvaptan for PKD. However, it is primarily for my own personal reflections as a future memory prompt. But I do hope that it will serve as an information starting point for others. Please note 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

Disclaimer: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own 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 big changes

One of the significant differences in the last two years is that tolvaptan is now available as a generic here in the UK. This is a very good thing in that it will save the NHS a great deal of money (as well as users in other countries, especially those paying out of pocket or through a ridiculous “health insurance” scam in the USA).

Another good thing about the new generic option is that there is less packaging which is good for the environment. The generic packaging also includes hand perforated tabs which makes it easier to carry my afternoon pill with me on days I go into the office. I still put the little tab in my little pill case, but that’s just because it’s a special pill case and I want to use it*.

The only “bad” thing I’ve found about the generic is the taste. It’s yucky. Just, yuck! This is only a problem if the pill sits on my tongue for too long before it gets washed down with water. But after a couple of times tasting the slight bitterness of the pill, I have learned how to place it in my mouth just right so that it gets carried away with the water immediately. So please don’t let that dissuade you from switching to the generic form if you are given the chance.

Another “upgrade” in the last two years is that my hospital unit (Edinburgh Royal Infirmary) has begun delivering the three-month supply of tolvaptan. They did this for “shielding” patients during the COVID lockdowns, which included me, but now they’ve rolled the service out for everyone. That means that people no longer need to make their way to the hospital to collect their medication – a great time saver, especially for people who don’t live nearby.

Hydration and tolerance changes

In my four-year update, I briefly noted the difference in my hydration patterns before and during the COVID pandemic. Now that the world has “reopened” (despite COVID not being over) things have changed again. Some of this is a change in access to facilities and water whilst other changes are my own tolerance of tolvaptan.

Whilst most places are open as normal again, including access to public toilets, it is not at the pre-pandemic level. There are also changes in the availability of water fountains and even in how or if cafes serve plain (tap) water. This doesn’t impact me on days I go into the office, but it can mean a little extra planning for a leisure day in town.

However, after six years, I have found that I can tolerate tolvaptan extremely well now. I do still notice an increase in thirst (and therefore, an increased need to urinate) when I am taking tolvaptan, but I feel that this has levelled out quite a bit since I first began taking it. My body is certainly accustomed to the hydration needs now and I rarely have any issues with it. In fact, I can generally still sleep through the night without issues of thirst or a need to urinate.

In previous updates, I shared details about my hydration process that I call “front-loading”. That’s where I ensure that I drink a great amount of fluid (generally peppermint tea and water) in the first few hours after waking. Then in the afternoon, I begin to taper the rate of drinking so that by the evening I am only taking a few smaller sips of water in the hour or two before bed.

This front-loading process allows me to start my day well hydrated so that I never really feel thirsty as the day goes on – providing I do take some fluid intake. Ultimately, it means that my overall fluid intake has decreased since the first year or two on the medication. This means that I can better balance my activities without the constant need for water or toilet facilities.

I am still drinking between 4-6 litres (150-200 ounces) of fluid on a typical day, but I am generally on the lower end of that range most days. In fact, some days I drink less than that – depending on my activity levels and the amount of fluid I get from my meals.

Overall, my tolerance for tolvaptan is so high that it doesn’t really impact my life in any negative ways these days. And that is something to celebrate.

The reflective bit

Assuming I am experiencing the “average” benefits from this medication, my disease progression will have slowed by about 30% each year. That means that, after six years of taking tolvaptan, I’ve added nearly 2 years of “extra life” on my kidneys before they go into kidney failure. And whilst my doctor suggested I am still on track to make it into my 60s before that happens, he did mention transplants for the first time at my last appointment – mostly about his initial instinct that Bob and/or Dave will need to be removed before a new kidney can move in. There just isn’t space for all three in my body**.

I continue to be grateful that I have access to tolvaptan. Even more, I am grateful that I live in Scotland and so don’t have to pay for this life-changing medication (at the point of service***). However, I also continue to question my route for future healthcare when my kidneys do fail. I am torn over the ethical implications of my “taking away” a kidney from someone else on the transplant list – someone with a partner or children who rely on them. But that’s something I have time to struggle with. And even more time, thanks to tolvaptan!

If you have any questions or comments, please feel free to reach out in the comments below or if you’d prefer, you may contact me privately.

Disclaimer: I am not a medical professional, nor do I have any professional health or fitness qualifications. This post is about my own 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.

* As of this update, tolvaptan is the only medication I take so I don’t need a pill organiser, let alone a pill case. (Fingers crossed it stays that way for a long time!) And the pill case was my Mum’s, so it’s extra special.
** This is my preference, and not just because it will mean I can get rid of the distended PKD Belly I’ve been carrying around!
*** The Scottish NHS is funded by taxes, so everyone pays in some way. But we all get the same care, regardless of how much we pay in. And that’s the way it should be in a civilised nation that cares for the people living within the borders. (Also, the “cost” of my healthcare via taxes is far, far less than the cost of my healthcare in America, between insurance premiums, co-pays, and the portion that my taxes covered.)