Tolvaptan tales: The beginning

Last month I shared that I was getting ready to start a new medication called tolvaptan. The drug is meant to slow the progression of my kidney disease (polycystic kidney disease, or PKD) which is the best I can hope for as there is no cure for it (yet). I struggled to find any good, in-depth reviews before starting the drug, so I decided to share my experiences here.

I believe that information is knowledge and knowledge is power. And that’s what this post is: Information that will hopefully lead to some knowledge and power (or self-advocacy, which is an important form of power). It will also serve as a record for my own uses when I look back at my progress in life. (This blog is, after all, primarily designed for my own needs.)

I’ve organised the information below into sections describing the first and second dose levels (2 weeks each) followed by issues related to weight loss and appetitesleep and exhaustionchanges to my routine, and the next steps in my tolvaptan journey.

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.

Tolvaptan: Month One
Dose: 45/15mg for the first two weeks; 60/30mg for the second two weeks
First pill: first thing in the morning with a glass of water; no food or coffee for 30 minutes after that.
Second pill: eight hours later with a glass of water; other food or beverage can be enjoyed immediately.

Weeks 1-2 (starter dose)

On Day 1, I took my first pill at 8:00 am with 16 ounces of water. Adhering to the rules, I waited 30 minutes before eating or drinking – which made my morning coffee taste that much nicer!

About 90 minutes after taking my first pill, I felt the need to urinate. I found myself wondering if it was the drug, or if it was normal for me. Before starting the drug I was already a heavy water (and mint tea) drinker, so I have often had to “go” more often. Only because my days are not overly regimented it’s hard to know what my “normal” patterns are and what is based on a behaviour change.

Throughout the day, I drank my normal amounts of fluid – with the addition of a glass of water with my second pill at 4:00 pm. So that means I had about 108 ounces of peppermint tea and another 32 ounces of water with the pills. That is approximately 4 litres, which seems to be a common fluid intake on the “starter dose”.

I woke up at 3.30 in the morning the first night. Contrary to what I expected, I didn’t wake with an urge to urinate. Instead, I woke up feeling thirsty. It was a similar thirst to the way I feel in the middle of the night after spending the day at a beer festival – only without the hungover feeling. The thirst was enough to compel me out of bed to drink a large glass of water. And, whilst I was already up, I made my way to the loo. After that, I slept through the rest of the night. When I woke up the next morning, I did not feel thirsty nor did I have an urgent desire to use the toilet. Instead, I felt like I did any other morning.

Day 2 was a similar, yet different experience. I took my first pill when I got out of bed (same) but I didn’t feel the same urge to urinate as I had the day before. (Although both days the first thing I did was use the toilet – as I always have done when getting out of bed.) I used the toilet before leaving home then stopped off for breakfast before going to the office. There was a 2-hour gap between leaving home and arriving at my office, which included about 32 ounces of water and peppermint tea (in addition to an espresso). And so, it is likely no surprise that I stopped off at the loo when I first arrived at my office.

After that, my day was fairly normal in regards to fluid intake and evacuation. (Keeping in mind that my normal workday fluid intake is already higher than the average person.) When I got home, I treated myself to two Pimm’s Cocktails, which means about 24 ounces of fizzy sugar water. As often happens when I have sugary and/or fizzy drinks, I found myself feeling thirstier later in the evening. No more than normal though, so I can’t really say if it was the tolvaptan or normal thirst.

I went to bed quite early on the second night because I was very tired. I had been working quite a bit the week previous and was feeling tired from that. I had also had a deep-tissue massage and stretching session earlier in the day for a sore hip (totally unrelated to the tolvaptan or PKD) which can make me feel quite tired. And again, I woke up in the middle of the night feeling thirsty. This time, I was prepared with a glass of water by my bed – although I still chose to get up to use the toilet. (Just in case.) Again, I woke up the following morning (Day 3) without a desperate need to urinate and without feeling thirsty.

My third night’s sleep was uninterrupted if you don’t count the fact that I woke up needing the toilet about 15 minutes before my alarm clock went off. (I think that counts as sleep through. Yes, I am counting that!) And as I started getting ready for the day ahead (Day 4), I started to think that this tolvaptan stuff wouldn’t be so bad. I haven’t been feeling the “extreme thirst” that others talk about, and I hadn’t really noticed an increased need to urinate. But then I remembered that I am only on this dose for two weeks. And that the side effects increase as the dose increases. And that there are two more step-ups from the dose I’m at now. So I stopped feeling so pleased and smug and started to realise that this might well be the calm before the urine storm!

On Day 7, I experienced my first absolute need and desire for water. This was the first day that I had errands to run that took me away from my office and my home for an extended period of time. I was quite rushed before leaving for the errands in the early afternoon and had probably not hydrated enough. About halfway through the (approximate) three hours, I began to feel very thirsty. Only there were no shops around and I couldn’t find anywhere to get water so I had to suffer through. The moment I arrived home, I drank two 16-ounce glasses of water just to start to feel normal again. Total rookie mistake!

This experience helped to prepare me for Day 10 when I travelled to Falkirk for the day. I took a large bottle of water with me on the train to sip along the way. I then refilled the bottle for my return journey.

As the first two weeks continued, I really didn’t notice any of the side effects. I was drinking extra fluid, but only about 32 ounces more than normal. As I was drinking 3+ litres before starting tolvaptan, the small amount of extra fluid wasn’t really an issue for me. Likewise, my bladder was already used to making several loo runs during the day. So, again, it wasn’t a big period of adjustment for me. What was hard was that I was waking 30-45 minutes earlier than my alarm was set for. But I tried to think of that as a positive thing, as it meant that I was up and about a bit earlier in the day. Oh! I also noticed that I had a strong desire for just plain water at times, instead of my normal peppermint tea. Which was odd, as normally the tea was more than enough to appease my thirst.

To summarise: By the end of the first two weeks, I felt as if I was managing quite well. I was sleeping through the night, but up a bit early in the mornings. I was drinking (close to) the same amount of fluids as pre-tolvaptan (about 3 litres a day), but noticed that I needed to spread it out over the day. Previously, I drank 90% of my fluid before my workday ended; during these two weeks, I started to hold back a bit so that I was drinking more fluids in the evening. (But not too much; just small sips.)

Weeks 3-4 (step-up dose)

Day 15: This is when I increased my dose to 60/30mg. Again, my first pill was a little after 6:00 am. I didn’t notice an increase in side effects (thirst, need to pee) during the day. I also didn’t feel that I increased my daily fluid intake by any noticeable amount over the first two weeks. At this point, I also seemed to be sleeping through the night still – although still waking up early with the need to urinate. (Note to self: Try and harness the power that comes with that early waking time!)

Days 16-21 were a blur of the same experiences. I found that I was drinking a little bit more than the first two weeks but most days this was only around 4 litres. What I did start to notice was that I’ve developed this odd sweetness or fruitiness in my saliva at times. This is generally after I’ve gone a while without water and it almost feels like rehydrating my mouth causes it. It isn’t a constant thing, and it isn’t really a problem, but it’s weird. (Apparently, it is a common side effect though, so nothing to worry about.)

During the second week on the increased dose (Days 22-28), I noticed that my thirst increased. My overall fluid intake didn’t go far beyond 4 litres most days though. I also started to wake up in the “middle of the night” (around 4:00 am) feeling both thirsty and the urge to pee. This was a shift from the first 2-3 weeks where I was mostly sleeping through the night, waking shortly before my alarm was due to go off.

The nights I slept through were the nights when I had less to drink in the two hours before bed. And those nights tended to be on days when I woke up earlier. Waking earlier means taking the first (and subsequently, second) pill earlier. And that means the thirst is happening earlier.

There isn’t much more to share about the second dose, as I was starting to develop a pattern by then. I did make some changes to my routines though, which I’ll talk more about later in this post.

To summarise: Weeks 3-4 were more challenging as I started to wake in the middle of the night more often. My fluid intakes increased a bit from the first two weeks and the effects of the pills seem to be kicking in for me now. However, I am confident that I’ll get used to it.

Weight loss and appetite

I hadn’t expected any issues with weight loss or appetite. However, on Day 4 I began to wonder about weight loss. Like many people, I tend to have a lower scale reading first thing in the morning than I do the last thing in the evening. Only on Day 4, I stepped on the scales before bed and I was 2-3 pounds lighter than what I would expect for a morning weigh-in. I am at a healthy “average” weight, and whilst I would like to lose a small amount of weight leftover from last year’s broken ankle, I didn’t like the idea of losing 2-3 pounds a week. Whilst that weight has not been regained over the course of this first month, I have also not lost any further weight. I guess that this might be water weight loss because of the diuretic properties of the medication.

My appetite has also been a bit odd. I don’t feel that I’ve lost my appetite, and I still feel hungry if I haven’t had a meal around mealtime. However, I do feel that I am less “snacky” feeling than normal. I imagine that this might be due to the additional fluid intake. And if I’m honest, it’s not a problem as I feel that I snack too much anyhow. That said, I do worry that over time this might impact my weight in terms of “proper” weight loss instead of water weight loss. This might be OK for 5 pounds worth of weight loss, but anything more than that would put me at risk of being too thin. (Not quite underweight, but too thin for my frame and personal preferences.)

In discussing these issues with my doctor the other day, he did not seem overly concerned that either issue would be a problem in the long term. However, they are things I will pay attention to and might be things that you notice if you take tolvaptan.

Sleep and exhaustion

I haven’t felt overly motivated or energetic since starting the pills. (Although I feel that is starting to improve now.) The first few days, I put this down to the distraction of wondering when and if the side effects would kick in. As time went on, however, I wondered if it was because I wasn’t getting as much sleep – either because I was waking early or waking in the middle of the night.

Now, however, I think it might be a combination of lack of sleep and my normal cycles of feeling unmotivated (in part caused by the stress of doing a PhD, but also in part because of the loneliness of widowhood). Also, I have not been running a lot lately (barely any running at all!) because of a strained hamstring and glute. And I do find that a lack of physical activity can impact my overall energy and motivation levels.

Changes to my routine

I have realised that I will need to work a bit harder at making changes to my routine if tolvaptan is going to fit into my life. The changes need to be made to address issues of sleep – and both the quantity and quality of that sleep! This means addressing two major issues: (1) the timing of taking my pills and (2) the timing and pace of my fluid intake.

As a way to help myself take the first pill earlier, I have started to leave the pill and a bottle of water by my bed each night. That way, I can pop the pill when my alarm goes off at 6:00 am, then I can hit the snooze button a time or two if I need to – which is something I do most mornings anyhow. This also means that by the time I get out of bed, I can go straight to my morning coffee routine.

This means I will be taking my second pill earlier, which I hope will help to get my thirst out of the way earlier. And that, in turn, should make it easier to drink a bit less in the evening which, in turn, will hopefully help me to sleep through the night.

I also need to make changes to how I address my fluid intake during the day. I have always been quite good at sipping peppermint tea during the day when I’m at the office. However, now I need to work harder at having a couple of glasses of water before I leave the house. I also need to ensure that I’m drinking a couple of glasses of water as soon as I arrive home so that I don’t feel the need to gulp great amounts of water an hour or two before bed.

I hope that if I can make these small changes to my routine, I will be able to sleep better. And that will sort out the exhaustion issue which (so far) is my biggest concern.

Next steps and random thoughts

After meeting with the tolvaptan medical team the other day, they are happy for me to increase my dose to the highest level (90/30mg). However, I have decided to stay at the current dose for a while longer whilst I get used to it. This is partly because the rest of June will be absolutely crazy with academic conferences that I’m either running or presenting at, and I don’t really want to fuss with having to drink even more water (or having to pee more!) during that time. I also want to give myself a bit more time to re-adjust my daily habits so that I can manage my thirst and urination needs in a way that doesn’t impact my sleep.

I have been given the higher dose though and I will start taking it as soon as my June conferences are over. So by the time I see the tolvaptan team in July, I will have been on the highest dose for nearly two weeks. Hopefully, I will have started to manage the side effects of that dose by then.

On another note, whilst I found these first two weeks to be the easier two weeks, I understand that most people find the first two weeks the hardest. This is probably because most people are not already drinking high volumes of fluid, so they have to adjust to the extreme thirst in a way that I didn’t. From what my tolvaptan doctor said, it sounds like many people starting the drug have already been waking in the middle of the night to urinate, so this seems to be a less worrisome effect for some people. (Which means that I am a bit of an outlier, but I’m an outlier in most things!)

Overall, this past month has felt especially positive for me because I am still unsure that I will want dialysis or a transplant when (or indeed, if) my time comes. But at the same time, I don’t want to die. So this is a great way to live a bit longer without the costly and invasive medical treatments that I don’t feel my life warrants. (It’s OK that you disagree with me there.)

I plan to share another update of how things go over the next month. I will also be sharing a post specifically about running later this summer, as I have noticed that I am needing to make adjustments to my hydration needs because of the drug.

If you want to add your own experiences (or ask questions) please feel free to do so in the comments below or contact me privately. This post may be updated as I gain more information so please feel free to make relevant suggestions for updates, too.

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.

12 Replies to “Tolvaptan tales: The beginning”

  1. Great review of your first several weeks – I could relate to much of it taking Tolvaptan during the trials for 6 years. Also, keeping your sodium intake lower will help with thirst. Good luck going to the top dose and your PhD journey!

    1. Thank you for your comment, Alice! I am really excited about this new treatment and hope that it does good things for me.

      I’ve always tried to keep a low sodium diet, which helps. However, I have found that when I get the really sweet taste in my mouth and desperately want something savoury just to get rid of the sweet. (I like salty snacks over sweet!) I am trying to munch on carrots when that happens, which seems to help. Time will tell.

      Thanks again for your comment!
      All my best to you,

  2. Just a question about all the water consumption: do you find it makes you feel bloated or is the peeing happening often enough that you never have a super full stomach of liquid?

    1. Hi, Martha! Thanks for your question.

      Overall, I do not feel that the water consumption makes me feel bloated. However, if I am drinking lots and lots of mint tea at my desk and waiting until I am near-bursting before running to the loo, I do notice that my belly is quite distended – but only until after I pee. But on a regular basis, no; no I do not feel bloated.

      As an aside: When I’m at home, I occasionally weigh myself before I pee and I’ve noticed there can be a 2-3 pound difference in weight before and after I use the loo. But again, that’s if I’ve not gone to the bathroom in a while. (I am trying to make trips to the loo more regular – even if I don’t feel the urge to go.)

  3. I am glad to see you keep updating this, I will follow you and join you with tolvaptan from India hopefully soon! And thanks for tweeting it!

  4. Thank you for sharing your experience and look forward to reading your follow up blog. I was a little scared at first as the whole thing is very daunting and I worried how the side effects will affect my life and my job but reading your blog has put my mind at ease slightly! My clinic date is the 18th July so not long now! Thanks again for sharing

    1. I’m pleased to hear that my experiences have helped you a bit! It really is a lot easier than I expected, though I know that others have had a harder time than I have.

      There is a new “tolvaptan community” on Facebook that you might find useful. It’s a rather small group as it only started a couple of weeks ago, but there are people at different stages in their use of tolvaptan and it’s a really supportive place.

      Please do keep me posted on your progress once you start. I hope that you find it as easy as I do!!

      All my best,

  5. Thank you so much! I am on day 1 of tolvaptan and was in desperate need of reaching out and finding some real life human experience of it and not just the endless medical journals I have been finding on the internet. I am slightly nervous as I have had a liver transplant and am worried about the effect on my Liver but I am having bloods taken every 5 days so I am sure they me I’ll know pretty quickly if there is an issue. Thanks again for your openess, I don’t feel as alone now. X

    1. Same here , my medication is coming this week and I’m terrified . I have the added pressure that j need to loos 15 kg too recommended by my consultant. Nice to find real people ❤️

      1. Hi, Natasha. Thanks for your message. I hope that you’ve managed to get started on tolvaptan and that it’s going well.

        You might find that you lose weight easily in the beginning, especially if you are so busy drinking water that you don’t have time to snack — or that you are too full-up with water to have room for food. Just be sure that you are drinking more water than juice, or you will risk too many calories and too much sugar!

        Good luck!

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