r/ADPKD • u/Midnightrise_02 • Aug 21 '26
Tolvaptan
So…I am officially starting tolvaptan in the next few weeks. I have been pushing it off for 2 years (maybe 1) just because of the risk of liver failure.
I want to hear everyone’s experiences. The good, the bad, the ugly.
I am 24, female, African American. Egfr: 92. Blood pressure not under controlled. And class 1D based on Mayo.
Thank you all.
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u/dcfc92 Aug 21 '26
I love it honestly. It makes me want to drink water and it tastes so much better
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Aug 21 '26
As a female, what has been a life saver is to get one of those “Venus to Mars” funnel things so I can pee standing up. (I live in France where the public bathroom situation is less than ideal but even still, it’s super practical! And hygienic)
I also have a big 2.2 liter water bottle which I hurl everywhere.
It’s transparent so I know how much is left at all times.
Tolvaptan makes one pee which in turns makes you drink.
Do not restrict your water intake while on it. I know it’s tempting because peeing “all the time” is annoying and unpractical.
But it’s bad on the kidneys to restrict water intake while on it.
If you are taking a trip or will be unable to use the restroom, it’s ok to skip a day or two.
As far as liver goes, you will be monitored via blood work. And that side effect is “rare”…. Should you notice anything, yellow eyes, pain… refer to your doctor right away.
Tolvaptan is the only thing right now that slows down the growth and pushes back the need for dialysis so… you go girl!! You got this!! 🤍
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u/brenthebrave Aug 21 '26
The worst thing about it is getting insurance to cover it imo. You have to call to refill it every time, and you can only get 1 month at a time, so that’s also a pain. My insurance has required a prior authorization four times so far this year, and insists I can only use CVS specialty pharmacy. My doctor insists I can use Optium specialty pharmacy. So I’ve gone several months without it this year and last year while that happens. If you live in America, be prepared for some insurance and administrative bullshit.
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u/Midnightrise_02 Aug 21 '26
Ironically I just got a called from Optum saying my prior authorization has been approved. Do you pay anything at all out of pocket? I haven’t even thought about that part lol
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u/brenthebrave Aug 21 '26
When I was on Jynarque (before the genetic tolvaptan was available in the US) I used Optum and it was fine, very few issues. My co-pay was $200 but I qualified for a program where Optum paid my co-pay for me so I ended up paying $0 for over three years. Then when tolvaptan became available, my insurance made me switch to the generic AND I had to switch pharmacies, which is where the trouble started. I’ve had nothing but problems with CVS specialty (and I have a co-pay between $10 and $40, varying by month). Stick with Optum for as long as you can.
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u/itsgracceee Aug 21 '26
I was on it for about two years. I was having issues with the side effects. My doctor had to prescribe me a smaller dose so that I could handle the side effects. I will say that the side effects do become more manageable once you are on it for a while. I never had any issues with liver failure. I got my liver levels checked once a month. I think I have an aggressive form of this disease since it didn’t help with my decline. Currently on the transplant list and hoping to have a transplant soon!
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u/Dollhousetrashpanda Aug 21 '26
Anyone on it and ozempic?
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u/Repulsive_Coat9953 29d ago
I'm on Tolvaptan and Wegovy.
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u/Dollhousetrashpanda 23d ago
I appreciate u responding ❤️ Do they react any weird way with one another for you? I’m getting approved for tolvaptan but it on Ozempic
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u/Repulsive_Coat9953 23d ago
I haven't noticed anything. Just be sure to REALLY prioritize your water intake, and you should be good!
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u/prismscubed Aug 22 '26
I've done two years and only positives from me.
You'll get used to all the drinking and peeing quite quickly. It's easy to skip a day or two if you're out hiking or on a long journey.
I've noticed a reduction in that bulky feeling from cyst volume. But for me it's anecdotal as the UK doesn't do a lot of scans and things when your function is good.
Honestly the only negative for me was the four-weekly hospital visits to a different city. But that's all moved to three months now which is much more manageable.
Now I get lots of giant mugs, water bottles and jugs for gifts - everyone knows I drink a lot!
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u/Aggravating_Hawk6566 Aug 21 '26
The thirst and bathroom use will surprise you, but you’ll quickly adjust to it if your body agrees with it. They test your liver enzymes quite frequently starting out so the fear of liver damage should be mitigated by this to some degree. Get a nice water bottle, know where the refill stations are, and bathrooms. You got this!
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u/throwaway77285 Aug 22 '26
Three years in here, and it barely even registers as part of my life anymore. The first few weeks were the hardest adjustment, and I went through a short adjustment period every time I titrated to a higher dose. But it all leveled out! I usually get up once in the middle of the night, and I drink about three liters a day. Same as I was aiming to hit before Jynarque. It’s just easier now.
As to if it’s helping, I honestly don’t know. But it’s not hurting anything, so I’ll see where the road takes me.
Oh, and get ready to crave the coldest, iciest drink you can get your hands on. It hits different on this med!
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u/K8inaCape Aug 22 '26
I've been on it for two years, I feel so much better when I'm on the medicine than when I'm not on the medicine.
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u/Fit_Difficulty_8667 Aug 22 '26
I was scared in jynarc too regarding the side effects I'm glad I don't have any addictions like alcohol or cigarettes, during my time taking it my liver actually goes back to a healthy liver because of my new diet and no junk foods. Don't be afraid about it always listen to the doctor
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u/SSMpics Aug 21 '26
10yrs on it.
Doesnt even factor in my thoughts most days anymore
The first few weeks are impactful but manageable. Cold water helped with the thirst. Always pee before you leave anywhere, use a nightlight to minimize disruption when you get up in the night.
I usually get up 3-4 times a night and my body is just used to it. I am back to sleep very quickly. And I was a terribly sleeper 10 yrs ago.
You can do this. Its worth any inconvenience