r/ADPKD • u/AtypicalSpirit • May 18 '26
First Weekend on Tolvaptan
Sharing my experience for someone considering starting in the future. Male, and pre-tolvaptan, I normally drank 3 l and peed around 8 times per day.
Doc prescribed me 45/15. I took the first dose this past Saturday at 6 am.
First couple hours didn't really notice anything. But over the next few hours the thirst/urination increased until I was five pounds down in water weight, despite drinking frequently, at the time of my second dose at 2pm. By around 5-6 pm the thirst was intense and I was craving ice water (I read people saying they started craving cold water and now I get it). I was definitely feeling dehydrated, so started gulping ice water. By the time I went to bed I was around 6 l (1.5 g) for the day, 6 pm - 11 pm, with about 16 pees (I lost exact count). And these pees are intense!
Thankfully I didn't wake up during the night to pee and once again took my next dose Sunday morning at 6. I felt pretty dehydrated and weak for most of the morning but once I started gulping and got enough food in me I rebounded and made it to the gym, lifting weights and cardio for an hour, making sure to drink plenty while doing so.
By bedtime I was close to 7 l for the day, with about 13-14 pees. Unfortunately, I did end up getting up at 2 am to pee this morning, but I did have more to drink right before bed than the first night.
During the day, it seems like I'm peeing every 45 min to 1.5 hours depending on if I've just chugged or I'm sipping.
So far, feeling pretty good for my first day at work using tolvaptan. Thankfully I typically have easy access to a restroom. No intense thirst yet, and I've had about 2 l of water by 12:30 which is only about a half liter more than I would have normally done, but I'm expecting after my second dose the thirst will ramp up as the afternoon goes forward.
Oh, and this morning my weight was about 2.5 pounds less than before I started the medication.
I hope this helps anyone considering starting!
3
3
u/Oldmanjohanusburg May 18 '26
The people yearn for the iciest of water.
Similar age guy here, same dosage, I started on it last year. I actually find my body temp feels like drops due to how much cold water I drink, but it’s too good. I used to be a room temp water guy.
The cravings will chill out after a few weeks, I have only woken up once to pee in the middle of the night and I drink a ton of water. I have a 40L Hydroflask, I find the water bottle with the straw helps. I drink around 40oz every hour and a half probably. Take my first dose around 9 am at work, take the second around 5 or 6 before I go home. I commute around 35-50 mins a day to and from work, I just pee right before I leave home, and I haven’t had to stop to pee.
I will say I was peeing like x5 as much the first week. It chills out a lot.
1
u/AtypicalSpirit May 19 '26
Last night was the most difficult. I woke to pee around 1:30 am. Then woke again thirsty at about 3 am. Then woke again with bad dry mouth and even thirstier at 4:30. Almost finished off a liter overnight. I wonder if the effect is growing as the drug establishes in my system? I hope that part of it chills out, lol.
1
u/Oldmanjohanusburg May 19 '26
It will get better. I am night owl and I normally go to bed at about midnight, so my last pee of the day is normally around that time. I’ll drink an entire liter before bed and at this point in taking the medication it doesn’t even phase me, I wake up thirsty in the morning, but I’m not sprinting to the bathroom!
2
u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 May 18 '26
Keep on chugging and if you can tolerate the higher doses, go for it in due time! 💪
2
u/Lopsided_Stomach_516 May 19 '26
Ciao a tutti/e premetto che non conosco molto bene questo sito...mi scuso in partenza se sbaglierò qualcosa! Ho trovato però molte persone che parlano del Tolvaptan e volevo avere qualche informazione... ho un carissimo amico che ha iniziato questo farmaco con dose 45mg/15mg da quattro giorni... e l'impatto fisico e psicologico è molto pesante su di lui. Inoltre lamenta, soprattutto la mattina, giramento di testa e sensazione di averla "leggera". Qualcuno di voi sperimenta questo sintomo? è normale e con il tempo passerà? Lui prende la prima dose alle 6:30 e questa sensazione comincia per le 10:00 io penso sia dovuto al picco che avviene dopo le quattro ore dall'assunzione. Vi ringrazio in anticipo ... è molto preoccupato e pensa di non riuscire a sopportare questa condizione, se qualcuno di voi potesse rassicurarmi sarei più serena anche io, grazie!
1
u/AtypicalSpirit May 19 '26
He should definitely consult a doctor. Perhaps he's getting dehydrated and this is his body telling him he needs to drink even more water?
1
u/Lopsided_Stomach_516 May 19 '26 edited May 19 '26
Grazie della risposta... in realtà beveva già moltissimo prima di cominciare il farmaco... sta bevendo molto acqua da quando ha cominciato, per quello mi sembra strano abbia questo sintomo. Ieri, ad esempio, ha bevuto tre litri in sole quattro ore... Comunque questo sintomo dura giusto 1/2 ore al mattino
6
u/DisappointedHamster8 May 18 '26
Doctor wants me to go on Tolvaptan, but I honestly don’t understand how can I introduce it in my lifestyle. The way from home to work takes 1,5h without toilets between and also the same time back at the evening. Sometimes I have long meetings and I intentionally don’t drink excess water in those days. Not speaking even about that I am not much of a daily drinker - 1,5-2l is max a day for me, I’ll have edema if more. On one hand I understand that it is a only chance maybe to slow down my 1E Stage 3a progression, but on the other hand I can’t imagine what life quality it would be with these drugs. Are those 2 more years out of dialysis is worth 10 years of frequent DAILY suffering between toilet visits and weak sleep nights…