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Talkin’ tolvaptan

This entry was posted on Thursday, May 11th, 2017 by Frances Ryan.
Tags: tolvaptan, pkd, health, faith

Tomorrow morning, I will start taking a new drug called tolvaptan, which is meant to slow the progression of my kidney disease. When I was first recommended for the drug, I went in search of some user experiences online. But my search didn’t bring up any blog posts or laypersons’ stories and testimonials. So I’ve decided I would get my experiences out there for the next person Googling about tolvaptan and PKD! I will try to share a couple (maybe a few) progress updates, too. All posts related to my experience with tolvaptan will be tagged as such, in addition to my general PKD tag.

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.

What is tolvaptan?
Tolvaptan is a selective vasopressin V2-receptor antagonist. Which basically means that it reduces the level of the hormone that regulates the balance of water and sodium in your body. It does this by increasing fluid excretion (Reference 1; Reference 2). Remember this for when I talk about the practicalities of the drug later in this post!

Tolvaptan is also the first drug that is licensed to slow the progression of autosomal dominant polycystic kidney disease (PKD). Drug trials were found to slow the growth of the cysts and to slow down the loss of kidney function by about 30%. That means that someone “on track” for kidney failure in 15 years’ time will have about 20 years instead. (Your mileage may vary!)

So, basically, it’s buying me a bit more time for those clever researchers to find an absolute cure! (Fingers crossed!)

Can anyone with PKD take tolvaptan?
No, tolvaptan is not available for all PKD patients. First of all, the FDA in the USA has not (yet) approved it for use in the treatment of PKD. It has, however, been approved for use in the UK. (I am unsure about the rest of the world, but please do feel to chime in with a comment below!)

The NHS in England and Wales recommends tolvaptan for adults at Stage 2 or 3. In Scotland, adults in Stage 1 (that’s me!) are also eligible. Scotland also uses a 4-point “checklist” to determine who will benefit most. Here is that list:

  1. Kidney function is starting to slip, but not by much. In general, you should have a GFR of 30 and above (30% function or better)
  2. Kidneys are very large
  3. Family history of early kidney failure
  4. Have a genetic mutation that is likely to be “severe”

I hit points 2 and 3. However, it is slightly more complicated than the list. You can view the larger protocol here.

People who shouldn’t take tolvaptan are women who are pregnant or trying to get pregnant.

What are the side effects and risks?
There are two main side effects that people need to be aware of. The first one is the big one and will cause you to be taken off the drug. The second one is more of an annoyance. (Though I say that the day before I start popping pills!)

First, liver disease. (Sorry to start with the scare-mongering!) A small percentage of people taking tolvaptan (2-3%, on average) will develop abnormal liver tests. If this is going to happen to you, it will happen in the first 12-18 months—hence the monthly blood tests I’ll talk about later in this post. However, if this does happen to you (or to me!) the effects are reversible once you cease taking the drug.

Next, urine creation (and evacuation). Apparently, “selective vasopressin V2-receptor antagonist” is code for “make you really thirsty, like all the time”. And, as we know, what goes in… must come out! (Actually, I think that technically it’s code for “makes you pee a lot and that makes you feel thirsty”. Still, the same result.)

What this means is that you will want to drink a lot of water. It seems that “about three litres” is the norm. However, your mileage may vary! That extra drinking will mean that you are taking more trips to the little girls’ room (or gendered/non-gendered room of your choice). Most people I’ve spoken to have indicated that some of these trips are made in the middle of the night.

Of the people I’ve spoken to who’ve tried tolvaptan and then stopped, three did so because they did not like the night-time peeing side effect. A fourth person noted that he developed liver function problems. He also noted that his liver tests all returned to normal when he stopped taking the drug. 

Then there are the drug interactions. This includes grapefruit juice and St John’s Wart, as well as several other prescription drugs. There are also the general warnings for developing weird rashes or other possible adverse effects. So if you do start taking it and become concerned… call your doctor! Better safe than dead!

What are the practicalities of taking tolvaptan?
Tolvaptan is a twice-daily pill. There are different doses and you are generally started on the lower dose then you move up to a second and third dose as you can tolerate it.

For example, I will start on a 45/15 dose tomorrow. I’ll take a 45mg tablet in the morning followed eight hours later with a 15mg tablet. Two weeks later, I will jump up to 60/30. Once I get used to that, the next (final) dose jumps to 90/30. If I find that 90/30 is too much (as in, I’m peeing too much) I can step back down to 60/30. (I hope that all makes sense.)

You are meant to take the first dose with a full glass of water—and on an empty stomach. I have been advised to take the first pill each morning before my coffee. That means I will have to change my morning routine slightly as I normally have my coffee before I take a shower. Now, I’ll have to shower then enjoy my lovely moka pot. (Not a massive struggle if it means I can get a few more years out of Bob and Dave!)

Here in Edinburgh, there are monthly clinics that tolvaptan patients attend for the first 18 months. The first couple of visits are with a doctor then visits become just blood work and a possible chat with the nurse or pharmacist. Even then, you see the doctor every six months. The primary reason for these tests is to ensure that your liver tests are all still normal. After 18 months, blood work drops to every three months. This is because you are unlikely to develop liver problems if you haven’t already, so the monthly tests are no longer needed.

Here in Scotland at least, there are measures in place to make sure you receive all of the information you need to make an informed decision about the drug. They also provide you with a great deal of easy to read (and comprehend) information to take home.

And, of course, I am always happy to answer any questions I can—or to point you in the direction of information when I don’t know the answer. But please do remember the disclaimer at the start and end of this post: I am not a medical professional and nothing I say should be taken as medical advice. Yes, I am nearly a doctor… but not that kind of doctor!

Sometime after I have done my first monthly check up, I will share a bit more about my individual experience of taking tolvaptan. I will try to share with you how much fluid I drink… and how often I need to get rid of it! And hopefully, sharing my experiences will help someone else to make decisions for their own health down the line!

If you want to add your own experiences (or ask questions) please feel free to do so in the comments below or privately through my contact form. 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.

Comments

Really interested to hear about your experience and thank you for sharing with us. I’m also due to start on Tolvaptan soon so this is all very new to me too.
We have to try these things, hoping it’ll bide more time in the long run x

by Sara at 7:32pm (GMT) on May 12th, 2017

Hi, Sara. Thank you for the comment! Yesterday was my first day on tolvaptan so I don’t know how good/bad it will actually be. I’m taking notes so that I can share a fairly in-depth experience of the first month - which will hopefully help others!

I’d love to hear how you get on, too. If you want to share your story as a stand-alone blog post here, just shout and I’m happy to make that happen (it can be anonymous). Or feel free to just add to the comments on any of my posts! :)

Good luck for when you start!! x

by Just Frances at 10:02am (GMT) on May 13th, 2017

I Frances!
Thank you for sharing this news with us. :-)
I have PKD, stage 3, and next thrusday I will see my doctor were in Portugal and talk about tolvaptan!
I dont know if is avaiable in my country.
Wish me luck! ;-)

I Hope everithing goes well with your treatment.

Regards!
CM

by Cristina at 12:46pm (GMT) on May 14th, 2017

Hi, CM. Thank you for your message.

The European Commission approved tolvaptan for use in the EU back in 2015. So hopefully the health board in Portugal has approved it for use, too.

Let me know what your doctor says. It would be great to know whether tolvaptan is available there and if you are lucky enough to get to try it.

All my best to you!
Frances

by Just Frances at 2:12pm (GMT) on May 15th, 2017

Hi Frances
I am in Canada and I have been in Tolvaptan for 20 months now. I am in Stage 4. I am still on the lowest dosage. I drink 4 1/2 litres of water a day and pee every 2 hours 24 hours a day 7 days a week. The constant peeing is annoying I can’t sit through a movie, I don’t want to travel as I fear not being able to find a bathroom when needed. My kidneys are large and when I’m sitting I’m fine but once I stand up the urge to pee is “urgent”. In saying all this my function has stayed at 25% since starting Tolvaptan and that is what is important. So I will continue with it and drink drink drink. I look forward to reading your journey

by Tricia at 10:58am (GMT) on May 18th, 2017

Hi Frances, I also attend the ERI, I started on Tolvaptan in February, I’m on the maximum dose now, I was drinking around 10 litres a day but it has calmed down now and I have between 4/6 litres now, and I’m only occasionally up during the night, so it’s all good so far.

Lisa.x

by Lisa at 7:20pm (GMT) on May 18th, 2017

Hi, Tricia.

Wow! It sounds like you’re on the rough side of the side effect spectrum - especially compared to Lisa’s comment following yours! It sounds like you have a positive attitude about it all though, which is probably a big help. I’ll be sure to update after my next appointment (second week of June) and hopefully, I’ll have happy news!

Lisa,

I’m pleased to hear that you’re managing well on the full dose. I have been hoping that side effects might calm down as my body gets used to the drug (it certainly did for the starter dose) and your comment encourages me!

I was thinking of asking the ERI team about the possibility of a patient coffee group. I thrive on information and shared experiences and it would be great to meet up with people in various stages to chat over a litre of (much needed!) water. We’re all mostly attending ERI on the same days… so wouldn’t be too hard to arrange for those willing. Let me know if you might be interested…

All my best to both of you!
Frances

by Just Frances at 7:55am (GMT) on May 19th, 2017

I will ask my doc about this drug next week (US reader here). I know the study for tolvaptan finished a little while ago and I am interested in seeing if it would be good for me. I look forward to reading your next post about how your body has reacted to it this far. :)

by Martha at 2:27pm (GMT) on May 23rd, 2017

Hi, Martha.

Thanks for your note. I know that tolvaptan hasn’t been approved in the states (yet) but it’s still worth mentioning your interest to your doctor. That way, when it is finally approved, they will know you’re keen and hopefully get you started on it as soon as possible. My family are all back in America and I’m hoping my nieces and nephews who are affected my PKD will be able to access tolvaptan soon!

Tomorrow marks two weeks on tolvaptan for me. So far, so good - and the side effects have been almost unnoticeable since half-way through the first week. But I will be increasing my dose the following day, so I expect that the side effects will increase, too. I will share a full update after my first month’s labs are done in early June.

Good luck to you!
Frances

by Just Frances at 9:34am (GMT) on May 24th, 2017

Hi, thabk you very much for your post, I hope you keep updating us on your journey. Due to price and availability, I doubt samsca will ever be available in my country, so I am reseaeching on the possibility of bringing tolvaptan from India. Cheers

by Diego at 12:54pm (GMT) on May 26th, 2017

Hi Frances,  I started on the highest dose of tolvaptan back in 2008 and I’m still in stage 2 and my creative has stayed the same.  I’ve heard that tolvaptan may be getting FDA approved imminently ( let’s hope that this is indeed true) here in the states. It’s already approved but not for PKD. 
I find that I crave sweeter drinks—diluted lemonade etc. when drinking such large volumes of fluids.  Let’s hope for great outcomes for everyone—

by Jenny at 12:05pm (GMT) on May 27th, 2017

Hi,  Diego. Thank you for your message.

It really is a shame that certain countries and populations are priced out of some of these life-saving and life-prolonging drugs. I hope you have success in getting tolvaptan in India. Please do keep me posted on your progress!

Hello, Jenny! Thanks for reaching out.

Were you on the tolvaptan trials then? What happens when the trail ends? It would be a shame if you have to stop the medication whilst waiting for FDA approval.

I found it interesting that you are craving sweeter drinks. I have been a huge peppermint tea drinker for a few years now and drink it hot or cold. It’s not sweet, but it has a nice mouth feel. However, I have found that the tea is no longer enough to quench my thirst. Instead, I am really craving plain water! I usually only crave water after a run - so I suppose there must be a dehydration aspect to it all.

All my best to both of you,
Frances

by Just Frances at 8:22pm (GMT) on May 27th, 2017

Jenny, you participated in the Otsuka study, or how did you got your tolvaptan starting in 2008?

by Diego at 12:14am (GMT) on May 28th, 2017

Hi Frances and Diego,
  I started in a trial at the Mayo Clinic in 2008 -2011.  Then started up again in 2016 ( they let me start up again since I had already been exposed to the drug).  I’m in the highest dose.
  I love crushed ice and ice water but otherwise—it’s very easy for me to be on the drug.
  My understanding is that if it is FDA approved, I may still get it at no cost.  I hope that it happens—it would be wonderful!

by Jenny at 6:46pm (GMT) on May 28th, 2017

Nice to meet you both.

Jenny, a couple questions: What is the highest dose, how much are you taking?

Another question,  you say your creatinine levels where the same while you took it, and at stage 2. Did those levels change between 2011 and 2016 (I belive you said you quit taking it in that period)?

Also, before you started in 2008, did your creatinine levels where decaying, and stopped decaying when you started tolvaptan?

Cheers!

by Diego at 1:03pm (GMT) on May 29th, 2017

Hi Frances, great blog!
this can be off-list if you think that is better: do you have access to any information about the experiences of patients ordering Tolvaptan or the generic equivalent from India? Tolvaptan has proven to slow disease progression and it is a shame that approval has been delayed in parts of the industrialized world. Is it safe to order the drug from Indian online pharmacies until it is approved by the FDA?

by Kris at 8:35pm (GMT) on October 29th, 2017

Hi, Kris.

I know that people do access generic equivalents from India (and potentially other places) but I do not know the details of that. I do know that, personally, I would steer clear of medications that do not have a clear and safe provenance or that might be contrary to local laws. And I cannot personally recommend those things, either.

A VERY IMPORTANT thing to keep in mind with tolvaptan (or its generic counterparts) is that there is a risk of LIVER DAMAGE. That risk is real and that is why the drug is under tight controls that include regular (monthly for the first 12-18 months) blood checks to monitor liver functions. If you are self-treating with medications purchased from abroad, you will not have the oversight of a medical team who can monitor the drug’s effects on your body.

So, ultimately, I would say it is UNSAFE—even if the medication is all above board and safe when used under medical supervision.

All my best to you,
Frances

by Just Frances at 11:54am (GMT) on October 30th, 2017

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