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Tolvaptan tales: A one-year review

This entry was posted on Monday, May 14th, 2018 by Frances Ryan.
Tags: tolvaptan, pkd, health

This past weekend marked one year since I started taking tolvaptan. In that year, I have learned quite a bit about how to manage the medication as I go about my day-to-day life. 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.

Tolvaptan is meant to slow the progression of polycystic kidney disease (PKD). As there is no cure (yet), this is the best that I can hope for. I am excited to note that the FDA has recently approved tolvaptan for use in America, which means that my nieces and nephews might be able to benefit from the drug, 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.

Further resources for American/FDA approval:

Press release from tolvaptan’s creators
Webinar from PKD Foundation (including guidance for help with prescription costs)

Further information from Just Frances:

Talkin’ tolvaptan: A layperson’s explanation of tolvaptan
Tolvaptan tales: The beginning: A recap of my first month’s experiences (including details of the first few days)
Tolvaptan tales: A four-month reflection: A recap of my first four months on tolvaptan (with further details on some of the topics below)

Warning: This is a very long post. However, it is organised into sections to help you find what you’re looking for. You can jump straight to a section by clicking any of these hyperlinks:

By the numbers: Doses and lab values
Dose: I have been on the top dose (90/30mg) for nearly a year after spending two weeks on the low dose (45/15mg) and four weeks on the middle dose (60/30mg). The higher number is the morning pill, the lower number is the afternoon pill.

eGFR (kidney function): The month before I started taking tolvaptan, I had my lowest eGFR reading ever (53). It bounced back up to the upper-50s after that with a high of 59. However, my last reading was a new low for me at 50. (Yikes!)

That said, I am taking that low number as a blip and am hoping that it will recover a bit over the next couple of months. My positive attitude is because my first “low” eGFR (53) came during a very stressful time in my life that saw me eating a rubbish diet. This “new low” (50) is a bit upsetting, but I have to remind myself that I am (once again) at a very stressful point in my life (finishing my PhD) and that my diet has (once again) gone a bit south. That might explain why I went from 59 to 50 in a month’s time.

Liver tests: I noted in my four-month reflection that I had the slightest wee elevation in my liver enzymes, but that I was confident it would improve. And I am pleased to say that it did. The month after that initial (slight) elevation, everything was back to normal. Since that test (July 2017) all of my other tests have been safely within the normal range.

Other values: The rest of my lab values are as to be expected.

Take a pill, man! Timings and routing for taking 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.

I take my first pill before I get out of bed in the morning (normally at 6am) and my second pill eight hours later (normally 2pm).

I place my morning dose in a glass by my bed the night before, along with a bottle of water. This allows me to take my pill as soon as my alarm goes off. I can then chose to check emails from bed for a while, I can get up and go for a run, or I can fall back to sleep. (The back to sleep thing tends to be on the weekends.)

Taking my first pill from bed this early means that by the time I get out of bed (or get back from my run), my 30 minutes have passed and I can go straight to my morning coffee routine. It also means that my afternoon pill is taken early enough in the day that I am not drinking too much water in the evenings. (More on that below.)

I have a permanent alarm set on my phone for 6am and 2pm. I struggle to remember to take pills because I don’t generally have a daily medication routine, so this helps me remember—especially when I am having a busy day where time escapes me. If for some reason I decided to turn my alarm off the night before so that I can enjoy a lie-in on a weekend, I just set an additional alarm for eight hours once I (finally) wake up to take my first pill.

Skipping pills
As I’ve said before, skipping pills is OK. However, tolvaptan is a long-term medication which means that the longer you take it, the better off you’ll be. So you should take the drug as often as you can (within the limits of the dose).

That said, there are times when skipping one of the day’s two pills, an entire day, or several days is necessary (or desired). For me, I skip my pills on days when I am flying long distances (like home to America), when I know that I will be out and about with limited access to water or toilets (like climbing hills or running marathons), or when I just need to feel “normal” for a couple of days.

Many doctors recommend taking breaks when you’re on holiday—especially if you’re going somewhere really hot. Be sure to discuss this with your doctor though!

Water in, water out: Keeping hydrated and increased urination
Over the course of the year, I have learned a few tricks to help me stay hydrated and to not get caught out without a toilet. I have also determined that I need about 6 litres (200 ounces) of fluid to stay hydrated and to avoid the absolute thirst that the medication can cause if you’re not hydrated enough.

The biggest “trick” I’ve learned is that if I “front-load” my fluids I do not feel as thirsty later in the day or in the evenings. For me, this means that I drink about 4.5-5 litres (150-170 ounces) during my working day (standard 9-5). Then the rest of my fluid is sipped over the evening.

If I do not manage to get enough fluid before late afternoon, I find myself with a thirst that cannot be quenched. That means that I am drinking considerably more water than normal—and considerably more water before bed. The second of those things means that I am unlikely to sleep through the night.

Of course, all of this fluid intake means an increase in urine. I have yet to be caught out with a desperate need to find the loo, but I do think about my options when I am heading out for the day. Living in a cosmopolitan capital city means that I have a variety of coffee shops to pop into if needed. (Being a white, English-speaking, middle-class woman works in my favour, too, I admit.)

However, I also plan my movements based on my bladder. This means that I always pop into the loo before I leave the office—just in case there are any issues with my normal commute home. (Late buses, miscalculation of fluid intake, anything.)

This next bit might be too much information, but here goes: I generally pee first thing in the morning (6am) then I might pee again before I leave my house (8am) depending on how much water I have had at home. Once I get to the office, I will pop to the loo (9am) then I go again every 2-3 hours, depending on how fast I am “front-loading” my water. I go again when I leave my office (5-6pm) and once or twice before bed (going just before bed as well).

Of course, this “schedule” changes based on my day. Basically, if I know that I will be away from my home or my office for more than an hour (especially if I am in a meeting where I am not able to just pop out when needed) I take the opportunity to go. Just in case!

Getting my beauty sleep: The eight-hour dream
Thanks to the routines I’ve created for when I take my pills and how I manage my fluid intake, I get a fairly decent night’s sleep—most nights. I tend to go to bed around 10pm with my alarm set for 6am. In a perfect world, that would give me nearly eight hours of sleep (it takes me 10-15 minutes to fall asleep).

However, I do not live in a perfect world so I cannot guarantee that perfect night’s sleep.

If I manage my fluids really well earlier in the day, I am more likely to sleep later than if I can’t manage to front-load my water. This means that I might not wake up until my alarm goes off. Or at the worst, I will wake about 30-45 minutes before my alarm. In which case, if I don’t feel tired I will take my first pill and get out of bed. (I tell myself that I will use this extra time for productivity, but inevitably I spend it on Facebook.)

But even on a “bad” night, I will only wake up once and that tends to be around 4am. Assuming I manage to get straight back to sleep, I am then ready to wake up when my alarm goes off. If I’m not able to get back to sleep, I might allow myself to sleep for an extra hour or two after the alarm goes off and I have taken my morning pill.

Overall, I have found it to be quite easy to manage the pills in regards to sleep. However, I understand that many people (maybe most?) are up at least once a night (generally more than once) every night. So please know that my sleeping experiences do not appear to be the norm.

The review process: Regular blood work and liver tests
As part of the tolvaptan programme, patients are required to have monthly blood work for the first 18 months, and every three months after that. In the first couple of months (here in Scotland), there are in-person meetings with the doctor to ensure everything is going OK. After that, in-person appointments take place every 6 months with blood work happening every month.

My tolvaptan team is based at the Edinburgh Royal Infirmary. They work with patients to ensure monthly appointments are easy to manage. This includes working with your GP (if they agree) to do the blood draws at your local practice, saving a trip to the infirmary. My GP is happy to do this for me, which is a great time-saver as the GP office is so close.

One of the reasons for this blood work is to test liver functions, as there is a risk of decreased liver functions when taking tolvaptan. (This is reversible on ceasing the drug, should this be an issue for you.) As previously mentioned, I have not had any problems, save for the one slightly elevated result.

A general reflection: The touchy-feely stuff
Growing up in a large PKD family, I have always known that I have a progressive disease for which there is no cure. I’ve seen the disease progress from high blood pressure and pain to dialysis, transplant, and even death in various family members. And I’ve watched the process knowing that, eventually, it would be my time. (Though I am already quite lucky with the slow progression of my disease to date.)

But then tolvaptan came into view offering the first treatment. (Not a cure, but a treatment is better than nothing!) And that treatment is tolvaptan.

The treatment that tolvaptan offers is that it slows the progression of PKD by about 30%. So, at 30% over the course of 12 months, that’s about three and a half extra months on my kidneys. (Though with averages being what they are, I am aware that my mileage may vary!)

The biggest thing I have noticed in the past year is that tolvaptan has just become a part of my regular life. I think that I am quite lucky because the medication is easy to manage with my lifestyle. Importantly, it is relatively easy for me to manage the side effects because I work in an office environment where I am able to leave my desk whenever it suits me. I don’t have to wait for someone to “cover” my station whilst I nip to the loo. I don’t have to sneak sips of water in between dealing with customers/clients. I just sit in my office working away based on my (largely) self-directed tasks, which allows me to fit “life” in around my work.

However, I am also a relatively active person which means that I have struggled a few times when I’ve been out and about. There have been a few instances (especially in the first few months) where I was caught out with extreme thirst. One of those times was half-way through a 7-mile run, in a rural environment, on a hot day, after my homemade hydration pack failed me. Thankfully, there was someone tending their garden at one of the few cottages along the way, and she graciously provided me a glass of water—and directions to her garden hose, should she not be in and I have a need in the future. (I’ve learned lots of running-related lessons, which I will share in a separate post later.)

So yes, one year on and I am feeling quite happy and confident about this great new miracle drug. Of course, I feel a bit guilty about using up all of these precious medical resources (tolvaptan is not cheap!) but I am trying to get over those feelings. And I am especially excited that the drug has been approved in America now, so my lovely nieces and nephews will have the same opportunity that I have been given.

If you have any questions or comments, please feel free to reach out in the comments below or by contacting 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 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.

Comments

Thank you for sharing your stories so in detail.  I happened to obtain your website and so glad I did. Whole my husband’s family suffering from ADPK and so my husband in stage 4. The doc recommended to try the drug and we hesitate to take if it is worth. Hope people find a cure for the patients soon in the future. Thanks again for your story.

by Jina at 11:56am (GMT) on November 10th, 2018

Hi, Jina. Thank you for your comment.

I know that deciding to start a new medication can be daunting. The only way your husband will know if it works for him is to try it out. And if he finds that it doesn’t work, he can stop taking it. Although, it’s worth giving it some time to get used to the side effects.

If you haven’t already done so, it is worth checking out the Tolvaptan Community on Facebook. It’s a great place to seek out shared experiences from other tolvaptan users.

All my best to you and your husband,
Frances

by Just Frances at 8:56am (GMT) on November 18th, 2018

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