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The Truth About Tolvaptan: a PKD Patient Perspective

If you're reading this, you're probably looking from some insight into what it's actually like to take Tolvaptan, and I'm here to share an insider's perspective on just that.


As an adult with ADPKD, my nephrologist urged me to start taking Tolvaptan (Jynarque) as soon as it became approved as the first medical treatment for polycystic kidney disease. It was exciting to have a drug available, but I had many many questions.


The reason I'm writing this blog post is because there was a lot of uncertainty throughout this experience, and my aim is to educate & inspire other PKD warriors to feel confident in their decision to take Tolvaptan.



Firstly, let me just say that I will not be giving an opinion on this drug. I'll simply be shedding light on my personal experience & sharing some of the truths I think all patients deserve to know.


As a PKD patient & wellness professional, I love to help others make sense of things so that they can make an informed choice that suits their personal needs. I'd never tell a person to take (or not take) a medication because is that is not my place.


So, let me first explain a few things about Tolvaptan before I dive into my own personal story.


 

The following points are often not common knowledge before starting and they should absolutely be part of the conversation:


The science behind Tolvaptan is interesting and you should know how it works.


If you're aware of this medication, chances are you know it's to help slow the progression of rapidly progressing ADPKD. But do you know how it works to do this?


Knowledge is power, and having a better understanding of the drug pathways can ultimately lead to better informed, empowered choices and a more enlightened health plan.


Let's break it down...


There's a naturally occurring hormone in our bodies called Vasopressin; it's one of the drivers of cyst growth in PKD kidneys. Vasopressin binds to receptors on the surface of kidney cyst cells, encouraging the cysts to grow and damaging healthy kidney tissue; this process is what ultimately leads to kidney failure.


Tolvaptan works by preventing vasopressin from binding to kidney cyst cells, therefore making it harder for cysts to grow.


It's like a scene in a movie: Tolvaptan is a vasopressin receptor antagonist, coming onto the scene to combat the main character, or protagonist in the PKD renal story (the hormone, vasopressin). The antagonist's presence has the ability to re-write the story here, for the betterment of the patient's health, which is what all prescribing physicians are trying to accomplish.


So should you re-write your renal story? and when do you start?



It's tough to decide when to start taking it.


From a practitioner stand-point, putting a patient on Tolvaptan is a fairly straight-forward approach in the fight against PKD, but for the patient, there's much to consider.


The correct timing depends on the individual, their kidney function, life stage & life goals. Let me explain this part a bit, because it wasn't explained to me in great detail...


Let's say you're planning to start a family, or you've got big world-travelling plans, or maybe you're still young and have other things to accomplish.


The best advice I received in this situation was to go ahead and work towards my goals (but to not wait too long) and we'd have the conversation in a few more years. The objective of this medication is to preserve healthy kidney tissue while you still have some, but, you've got to plan ahead and check your priorities because taking Tolvaptan comes with its own set of challenges (more on that below).


So, how do you know when you should start taking it? The answer is: when all your questions have been answered and you're feeling ready.


Being ready also means understanding the experience is unique to the individual and no one can predict how your body will react.



Tolvaptan is not a life-long commitment.


Although it's recommended you stay on this medication in order to see its full effect, you can start and stop if you need to.


You can take "drug holidays," you can take a short break if you're sick, you can take time to re-evaluate. Once you start on Tolvaptan, you're not stuck on it forever. No one told me this up-front so I'm here to make sure this is widely known.


Having this knowledge was a huge relief and helped me to realize I had some control here. It also made me feel more confident in my decision to give it a try!



Your experience is a bit of a crap-shoot.


Even though there's a map to guide you & many people who have gone before you, it still feels like an adventure into the unknown.


I can tell you that your personal experience won't be what you expect. Taking Tolvaptan comes with highs & lows, weird side effects, frustrations, discomforts and sometimes, anxiety.


There is a high level of management required and you have to hold yourself accountable every single day. You'll develop a new routine to accommodate your habits, which will, in many ways, be ruled by pesky side effects & a steep learning curve (at first).


I've talked to many PKD patients on this medication and learned that most found the experience challenging, a few find it to be fairly easy, and everyone has a different list of side effects and ways of coping.


I think it's important to realize that what you read in a pamphlet isn't necessarily what you'll experience.



Often, there is no way to truly measure effectiveness.


I often get asked "how well does it work?" or "can you tell it's working?"


I've also asked these questions many times, and there isn't a straight answer to be found for everyone.


The hope is that the drug will buy us more healthy years at the tail end, before we require a transplant. Exactly how many more healthy years is unknown; there are too many factors at play and, the research is fairly limited in this regard.


I struggled HARD with this answer. I wanted something more concrete, especially once I realized the effect Tolvaptan has your daily routine...



Your routine will (likely) be impacted by Tolvaptan.


I can't put this lightly. Taking this medication can be really, really challenging.


As a said before, there is a wide range of experiences with this, so some people tolerate it better than others, but to help prepare those who are considering Tolvaptan, I'm putting the truth out there.


When you first talk to your healthcare team about Tolvaptan, they mention increased thirst & frequent urination. This reality is what you need to prepare for, because visiting the bathroom every 30 mins is quite disruptive to your day!


In addition, you'll go for frequent bloodwork to test liver enzymes, among other things, frequently. There is a risk of liver damage on this medication, so doctors keep a close eye on your levels. For the first 18 months, bloodwork happens on a monthly basis, then changes to every 3-months, then lessens again. Trips to the lap can be daunting for some, so it's good to prepare for this aspect as well.


You'll also quickly realize you need to rethink your priorities, plan ahead for every task, and, make sure you always have easy access to a bathroom.



Planning is imperative for success.


With good planning, comes better outcomes. Trust me on this, you can not underestimate the power of a solid plan of attack here.


While it can be very tough to manage on this medication, it absolutely can be done if you're willing to put in the effort.


Take some time to think about your current routine and how it could change, consider the supports you'll require, and be open-minded and flexible in your approach.


Do not go into this experience blind.


Ask all your questions, do your research and create a plan to get yourself as ready as possible.



You may experience a rollercoaster of emotions.


As you may have already gathered from what I've shared, taking Tolvaptan is no easy feat.


When you start out, you feel excited, optimistic and motivated to do your best, but as the side effects set in and your body tries to adjust, you start to feel stressed, uneasy & generally unsure.


You may start to question why you're taking this medication because, truthfully, you won't feel great in those first few weeks/months.


In the beginning, it feels like hurdle after hurdle just to find your footing and create a solid routine for yourself.


Do what you can to seek emotional support.


Talking through the challenges with others who understand is hugely beneficial! You can easily find engaging groups on Facebook that will welcome you into the community with open arms.


If you start to have persistent negative emotions, or you're not coping well, please talk to your doctor. It's important to be transparent about your side effects & mental health as you are not stuck on this medication.


Remember, it's okay to take a break & re-evaluate.


 


Now that I've shared a few truths about Tolvaptan, I'd like to divulge a bit of my personal experience so I can elaborate on some of these truths with added context.


I will do my best to remain neutral about the medication, as I want you to be able to form your own opinion of it. It is not my place to sway you one way or another.


Here is my story...


Why/how I started on Tolvaptan:


In July 2020, my kids were 3 yrs and 16 months, and I was done building my family. My plan was to start on Tolvaptan after my second child, so I moved ahead with the process at this time.


My kidneys were/are large, my eGFR was good (84) and I was otherwise healthy. My family members have progressed fairly rapidly to end-stage renal disease (failure), and since I'm likely on the same path, my nephrologist wanted to try this new intervention.


I had a quick, virtual consult with my nephrologist to discuss the drug and ask questions. I wasn't prepared for this chat and didn't know what to ask, so didn't get all the information I needed to prepare myself. I was a bit anxious about starting.


The first step was to do baseline bloodwork, including 24-hr urine.


My first day of the medication was mid-September 2020.


Leading up to this, I had been trying to drink as much water as possible in preparation, but nothing could prepare me for Day 1 when I drank 8L out of sheer desperation.


The drive to drink is strong and unrelenting. I couldn't eat and I felt very nauseous after drinking an unnatural amount of water.


I continued drinking 8L/day for the first few weeks and barely ate. Because of this, I was nutrient-deprived, tired and very cold. I want everyone to know about this because it did get better and there are ways to help your body adjust more gently (more to come on this later).


After the first month, I developed strategies for eating smaller meals & healthy snacks, started heating up some of my water, and learned to pace myself a bit more. By this point I felt like I was gaining some control, which was a huge relief.



How I felt while taking Tolvaptan (truthfully):


THE GOOD

At times, I felt optimistic and empowered. I felt like I was doing my very best to ensure a bright future for myself. I was proud of the hurdles I'd overcome and the fact that I was able to accomplish a lot in a day, even with restrictions.


During my experience with Tolvaptan, I learned I can handle a lot and I actually manage fairly well under stress.



THE BAD

Many of you reading this will be wondering about the side effects I experienced, and rightfully so! The side effects are what made this drug unbearable for me at times.


Please note, I did not deal with all of these all the time.


My top side effects:

  • extreme thirst, sometimes couldn't be quenched

  • urge to use the bathroom every 30 mins to 1 hour (better at night)

  • dry mouth

  • perpetual feeling of fullness

  • nausea

  • lack of appetite

  • specific food aversions

  • feeling cold all the time

  • feeling anxious about running errands (where would I pee?)

  • night sweats

  • exhaustion due to interrupted sleep

  • dry skin, especially hands from excess washing


As I mentioned before, the side effects of Tolvaptan differ from person-to-person, so my list above may not mirror yours or even what's listed in the drug company's information pamphlet.


Something else I struggled with was the lack of validation & reassurance.


By this, I mean, no one could tell me if/how well the medication was working for me. I couldn't look at concrete data and know that what I was suffering through was worth it.


For some people, they see their eGFR hold steady, or even improve slightly. Mine continued to decline and my kidneys continued to grow. This is not to say the medication wasn't working, but it was hard to stay motivated after a while.


So, after 18 months, and much debate, I made the decision to stop.


My nephrologist advised me to keep going, because this is the only approved treatment, but I didn't want to and I'll explain why....



My choice to quit Tolvaptan was a very empowered one.


Firstly, I want to acknowledge what a privilege it was to be able to take such an expensive drug. I am grateful for the opportunity and proud that I gave it a shot.


Ultimately, I decided to focus on quality of healthy years vs. quantity.


The truth is, my quality of life had declined, my mental health had taken a hit, and my body wasn't happy. I wanted to be as healthy as possible for as long as possible, but I also wanted to enjoy my days and continue to work towards my personal goals.


Months later, I stand by this choice because it was the right choice for me.


Thankfully, throughout this experience, I developed some habits that continue to serve me well (drinking large amounts of water, significantly reduced sodium intake, etc.) and I'm now better at listening to my intuition and meeting my needs on a daily basis.


I no longer take Tolvaptan, but I am still prioritizing my health by focusing on diet & lifestyle.


 

Thank you for reading this far!


My hope is that by sharing my story it will help inform you on your own journey.


To reiterate, I am not an advocate of Tolvaptan, nor am I against it. I remain neutral because I believe this choice is a personal one and there is no right or wrong answer.


Whatever approach you take in the treatment/management of ADPKD, let it be an empowered choice that serves you well in the present & future.


If Tolvaptan is not for you, that's OK.


If you're on Tolvaptan or you're thinking about it, I'm working on some "tips & tricks" to help you make the most of your experience and to mitigate some of the annoying side effects so you can feel your best.


In the meantime, here are a few tips for anyone preparing to go on Tolvaptan:

  • start training yourself to drink lots of water (3L+/day)

  • keep a water bottle with you at all times, even in the car

  • start eating smaller meals & working in healthy snacks

  • join an online group (try Facebook) and ask lots of questions

  • let your family know what's happening--you'll need their support


It's an honour to speak on this topic and I sincerely hope I've answered all of your burning questions. If you have more, please leave me a comment or contact me on Instagram (@pkd.wellness).


I have lots more to come on this topic, so please stay tuned!


In the meantime, if you're looking for some guidance on how to eat to support kidney health, please check out my free nutrition guide here.




XOXO






Ciara Morin

PKD warrior, Registered Holistic Nutritionist (RHN) + PKD Wellness Expert

1 Comment


Unknown member
Feb 21, 2023

I appreciate your post! I looked into Tolvaptan in 2019 and after researching the side-effects, I decided that I wanted to pursue quality of life over extension of life (just as you mentioned in this blog). I already use the bathroom a lot, so I couldn't imagine having to urge to use it even more than I do now. Right now I'm 48, and I recently had some testing done that has shown polycystic growth in my liver, which is associated with PKD. If this there is a risk of liver damage on this medication, I am glad I chose not tp try it, knowing what I know now. - Shannon

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