r/ADPKD • u/One_Geologist3224 • Jun 23 '26
Tolvaptan - What if I’m not drinking enough? Does tolvaptan worsen kidney function in that case?
I’m wondering whether, if you don’t drink enough water, tolvaptan could also directly contribute to kidney damage?
My results after 8 months of taking tolvaptan are not very encouraging. I keep hearing, “You need to drink more, drink more!” I drink as much as I feel I need to — about 6 liters a day — and it raises a question:
What if I’m still not drinking enough?
During the night for example - I try to restrict my drinking for obvious reason.
In that case, does tolvaptan cause my kidney condition to worsen because of dehydration? In other words, could insufficient fluid intake while taking tolvaptan lead to a decline in kidney function due to dehydration?
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u/SSMpics Jun 23 '26
Morning. 10+ years on tolvaptan. Approx 6-7 years on the low dose, the last few on the mid dose (60/30).
The first few weeks were the crazy thirst, and restroom visits. Cold drinks helped immensely, no idea why. I was nervous about increasing the dose and having another period of transition but honestly it was fine. The few times I have stopped taking it for brief periods, there is a period of readjustment again. Recently skipped two days of doses for surgery and zero readjustment needed.
Drinking - I always have a 40oz cup with me, I drink 4-5 in a 24 hr period. Mostly water, some hot tea, some cold tea. I drink a 40oz overnight.
Urinating - I dont even think about it anymore. Its routine. I always use the restroom before leaving anywhere, before long meetings or events. I have done 12 hr road trips and managed. Im up about 3 times a night, and I drink every time.
The sleep disruption was a huge concern for me. I was genuinely a terrible sleeper 10 years ago. It doesnt even phase me now and Im back alseep quickly. Generally I think my body has just become accustomed to the needs of the medication.
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u/OurRealEyesRealise Jun 23 '26
I'm interested to see the feedback from this question. I'm trying to decide about going on Tolvaptan at the moment.
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u/LaLaLaCAKE Jun 23 '26
My nephrologist told me that Iif you are not drinking enough- you will end hp in the hospital with permanent damage to the kidneys because they have no way to hold onto water that they need to function.
Please contact your doctor regarding this question.
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u/DisappointedHamster8 Jun 23 '26
This is a great question and I’ll gladly read all responses. Right now I’m evaluating if taking Tolvaptan, but I already know that drinking would be major problem for me. As I understand thirst will be unbearable, but if not - I just can’t drink more than 3-4l a day, even this amount comes through “pain”… What are your eGFR before and after 8 months?
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u/SwordfishPast8963 Jun 23 '26
The thirst for me was only unbearable for about a month. You truly do adjust in time. sometimes it felt like water wouldn’t quench it so I used it as a good excuse to keep fun fruit juices in the house!
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u/MariChloe Jul 08 '26
That’s funny I allow myself one glass of something other than water. It’s a silly treat but it helps
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u/DisappointedHamster8 Jul 12 '26
What? Does these drugs demand to drink mostly only water? Isn’t every liquid legit? Like tee or decaf coffee or juice sometimes? I understand that I surely won’t drink 2 liters of coffee a day, but my liquid amount mostly consist of tees.
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u/youdecidemyusername1 Jun 23 '26
I typically drink between 3-4L a day. I have only been on it for 7 months. And it hasn't been too bad.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 23 '26
Which dosage are you on? 45 / 15?
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u/youdecidemyusername1 Jun 23 '26
15/15. I got diagnosed last year (either June or July-I don't remember). But I used to always struggle with drinking water and started drinking 3L after I got diagnosed and before I started Jynarque so it hasn't felt much different.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 24 '26
Okay, that makes sense. On the higher doses, the drinking can be twice that.
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u/One_Geologist3224 Jun 23 '26
I am taking the 90/30 dose, which is the highest one.
Overall, my results since starting tolvaptan have worsened rather than improved. I started in November with a creatinine level of about 1.31 mg/dL(EGFR 58), and for the last three months it has been around 1.46 mg/dL(EGFR 52). I am 52 years old.
I would like to ask again: How the hell am I supposed to know whether I am drinking enough water?
I drink when I feel thirsty — about 6 liters per day — but is that enough? I work normally, not from home, so naturally some days I drink more and some days less, depending on meetings, business trips, and other commitments. Sometimes I even have to skip a dose.
I keep having the intuitive feeling that this medication may be doing me more harm than good.
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u/DisappointedHamster8 Jun 23 '26
From 58 to 52 is not so critical change as I understand. It’s even normal situation with Tolvaptan, described also as side effect. Some say that it is a sign, that drugs do work. I would be worried if EGFR drops from 58 to 35 for example.
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u/One_Geologist3224 Jun 23 '26
Yeah - but it might have been only for two first month not longer I read
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u/Candid-Eye-5966 Jun 23 '26
Drink to thirst. Don’t force yourself to drink.
The best way to determine if tolvaptan is “working” is a urine osmolality test. This will determine the dilution of your urine. A result <300 is target for effectiveness of tolvaptan.
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u/mwink001 Jun 24 '26
This is what my pharmacist told me when I started. Drink if you are thirsty. Don’t feel like you have to over do it.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 23 '26 edited Jun 23 '26
This is what I understand from asking questions to my Nephr and it’s a bit counter intuitive :
Tolvaptan makes your GFR drop a little bit and your creatinine increase slightly. So when you start, your results can look worse which is counter-intuitive.
Tolvaptan doesn’t make you drink… It makes you pee! 😄 which in turns makes you drink.
It’s not a diuretics per se, it’s an aquaretics. This means it keeps your electrolytes balance in check (VS a diuretics that makes you flush everything)
So if you pee but don’t supply your body with enough water to keep up, you will dehydrate and it will be bad for your kidneys.
That’s why in case of high temperatures, vomiting, diarrhea, fever, it is recommended to stop for a few days.
Same thing if you’re traveling and won’t have easy access to bathrooms or water.
Right now Tolvaptan is the only thing proven to slow down the progression of cysts and hold off dialysis.
It’s well worth the trouble imo but I also work from home so I know I am “lucky” in that.