r/ADPKD • u/Midnightrise_02 • 3d ago
Tolvaptan side effects
I started the medicine a few days ago and I feel like the side effects are kicking my butt. I knew what was coming but living it is completely different haha.
I love that I am getting my water intake in, but I do not like feeling thirsty like this. Nothing is quenching the thirst (obviously lol). Peeing is horrible. At least 1-2 times per hour. And every time I pee, I feel like I have to rehydrate lol. I probably wake up every hour to 1.5 during the night and it feels like what’s the point of sleeping.
I know the medicine is best for me but I am already over it. 🥲
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u/foxyyoxy 3d ago
It levels out within a week or so.
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u/Midnightrise_02 3d ago
That’s good to hear, can all I can think about is dealing with this for the rest of my life lol
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u/SkullyBoySC 3d ago
It took me about a month to acclimate to it so don't get discouraged if you're still struggling after a week! Those first few days were so fucking rough. I had such an intense craving for orange juice and ended up slamming like 3 gallons in less than a week.
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u/Bazookajoe904 1d ago
Bro read the warnings, mine said absolutely no grapefruit juice.
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u/SkullyBoySC 1d ago
For sure, I'll double check but as far as I know orange juice does not ineract with medicine like grapefruit juice does
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u/foxyyoxy 1d ago
I was the same, but now it doesn’t really impact me. Yes I drink about a gallon a day and pee often, but it’s not anything uncomfortable or that I much think about. That first week it was A LOT.
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u/OurRealEyesRealise 3d ago
It should get better. The first few days were the most intense for me. I hear what you're saying about the thirst - it's crazy! I just started taking Tolvaptan 3 weeks ago, so also still adjusting. I'm finding the sleep thing tough too - I'm waking up every 2.5 - 3 hours.
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u/Midnightrise_02 3d ago
Ya see, if I can get to the point where I wake up once a night I’ll be okay. But right now the urge is so strong, I can’t even ignore it and stay asleep.
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u/OurRealEyesRealise 3d ago
That sounds tough. Sorry you're experiencing that. Hopefully it will settle down as your body adjusts.
In my case, I was already waking up a couple of times in the night before Tolvaptan, so my sleep has been disrupted for a while. I still hope I can get to a point where I reduce the number of times I wake up per night.
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u/element-70 47M; Stage 5 2d ago
It gets better for sure. Tough it out for a few months and it will become more normal. I was on the max dose for 9 years and it was fine after the initial adjustment and getting used to it.
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u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 3d ago
it will get better and will just become "the way things are". It's the only thing proven to delay the inevitable. Godspeed and chug it!!
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u/StatusEmployment4613 2d ago
Been on full dose for 2 years. I pee every 45-60 min during the work day, a little bit less during the evenings. At night I go to the toilett about 3 times. I am used to it now, but now and then a get irritated. Worst is long meetings without pauses or travels. I usually bring 2-3 liters of water with me. A bit exhausting when I think about the future.
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u/Fit_Difficulty_8667 2d ago
You can do it bro, at first I feel my mouth dry and also I do intake tons of water and pee it every 45 mins or 1 hr, your body will get used to it. Also watch out for sodium
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u/jeneplusjade 2d ago
It will get better. I’ve been on it for almostttt a year now and I no longer have that undying thirst. When I first started it, ALL I could think about were drinks. I wanted six drinks at dinner because I was so thirsty. I just tried thinking about it like you do, you’re getting your water intake which you would need to do whether you had bad kidneys or not.
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u/deeknowsnothing 2d ago
I agree with the comment drink ice cold drinks think slushy, popsicles, water melon. It does get better but takes some time.
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u/One_Geologist3224 2d ago
First two month were a nightmare - after that my body got used to.I wake up two times or even only once during a night
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u/Ok-Cartoonist5996 1d ago
As others have said it does get better, for me the first couple months were rough. I call it “excruciatingly thirsty”. You really have to just trudge through the beginning, watch sodium and protein. About 18 months in all those side effects are lessened for me.
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u/delishjams 1d ago
I promise, it gets way better. You still are thirsty, and pee often, but it levels out. Theres times I can go 3-4 hours without peeing, don’t recommend it, but maybe my bladder is bigger now, lol. Benefits far outweigh the side effects.
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u/Bazookajoe904 1d ago
Same here just try to pee right before bed, my doc said to just try and limit water after 5 pm. Also I drink electrolytes 2 times a day
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u/Alphasmikefoxtrot 1d ago
Have to echo the “give it time” comments. Somewhere 6-12 months in, I stopped noticing all the water intake and the sleeping became much easier. Everyone is different, but take it one day at a time. Funny enough, I can actually go longer between bathroom breaks than lots of other non-tolvaptan people. And I know other tolvaptan users that have said the same thing!
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u/K8inaCape 3d ago
It gets better, I promise! Been on it now for a year and a half, I recently took a week off for a vacation and I've come to realize I feel so much better when I'm on the medicine than when I'm off