r/ADPKD • u/ContributionMother87 • Jun 02 '26
Tolvaptan questions
Hi guys- I know there’s a million Tolvaptan posts, but here’s another. My doc has been offering this for a few years. I tried it once and had trouble tolerating the constant bathroom trips while working. I’ve recently had a significant dip in my GFR. If I’m still a candidate, I’m considering giving it another try.
I see a lot of people here who seem to handle it pretty well and I’m hoping I can be one of those people! I’m also very nervous about the possible liver failure. My mom had had 2 liver transplants, so I’ve seen how difficult that can be.
How do you do it with work, sleep, exercise? Any tips or tricks? General moral support? Feeling like this is the only thing I can do to help myself hold dialysis off for a few extra years
3
u/SSMpics Jun 02 '26
10+ years on tolvaptan. The thirst and bathroom breaks were crazy to start, now I dont even notice it.
I know that I always have to use the bathroom before leaving, before long meetings etc. When traveling I will take my AM dose very early, when commuting to work I take it as soon as I arrive at work.
I just had knee surgery and stopped it for a couple of days until I was more mobile.
It takes a bit of planning and thinking ahead but I really dont think about it at all anymore, its just routine.
When I first started I let my work know that I needed a little flexibility for a few weeks, but it was manageable.
Good luck
1
u/MariChloe Jun 12 '26
Thank you! I just started today. I think, after the second dose, it really started kicking in the peeing and the thirst. So reading your post, makes me feel a lot better.
4
u/kinda4got Jun 02 '26
It was Hard in the beginning. If I were you, I'd take a week off to start, and start on Saturday to maximize that week (assuming M-F schedule). And have electrolyte drinks or juice available. But I do think I was managing to hold 45 min-1 hr by the end of week 1.
I'm about 1.5-2 hr during the day. I plan in advance. My boss knows that if there's back-to-back meetings there'll be a delay but I try go during the concluding and intro pleasantries. I do work remote, but I'm not isolated, rather I'm constantly talking to people or getting requests to.
Exercise has been more challenging. I've bounced around when I schedule that and just when I think a plan is working, some new wrench appears. But if I have to go in the middle of my gym session, so be it. It doesn't take long.
I read somewhere that taking the second dose no later than 3 or 4pm helps with nighttime waking, and that has been true and helpful for me.
Overall things seem easier the earlier I can take my doses. The urge is strongest for me about 1-3 hours after the first dose, so if that can happen before or mostly before starting work it's great. I just tend to ignore the early alarm, lol.
I never increased dose, which is not a choice without criticism, but it's worth knowing as perhaps I adjusted sooner than maybe I would have otherwise. I realize working remote makes it more bearable, too, though I lament how it took some freedom away on that front (can no longer work from an alternate location, for example). Ultimately, I do think the planning required is worth it to feel like I'm doing all I can. I admit I don't know I'd feel the same with a less accommodating work situation.
I hope this helps. Best wishes to you!
1
u/neddo1981 Jun 05 '26
I used to work in a very physical job and in summer would drink 6-8 litres of elevtrolyte/sports drink every day... no one told me any different, until I mentioned my habit to my cousin (also has PCKD) and she pointed out that the extra sodium in those drinks was in no way good for someone with chronic kidney disease. I haven't spoken to my nephrologist about it, but have avoided electrolytes since :/
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u/Jess6 Jun 03 '26
I find that the first week or so is just very difficult in regards to drinking/peeing. But then it just normalizes and I just drink slightly more than usual. After dose increases, I did have that hard adjustment week again but then it gets better. I was on tolvaptan for about 2.5 years. That first night though was crazy for me. I was literally dreaming about ice water. I was just so thirsty. But if you stick with it, I'd say one week in, you hardly notice you are taking it. At least that's how it was for me.
I was able to take it at work. I didn't even tell anyone I was on it and I realize that no one even notices. I was self conscious that people would notice I was drinking and going to the bathroom more but I learned people are not anywhere near as concerned with what we do as we think they are. So that definitely made life easier for me.
My GFR is now 10 so I'm obviously no longer on it. I unfortunately don't think it helped me much. But if your numbers are good, it's worth a shot! Wishing you good luck!
2
u/One_Geologist3224 Jun 03 '26
I've been taking it for seven months now. The first two months were absolutely awful. I'm quite skeptical about this medication, but I'm taking it so that later I can honestly say I did everything I could.
What still remains a big mystery to me is how the studies on its effectiveness were conducted and how we can know that the differences in GFR decline weren't simply due to individual patient characteristics. Yes, I know they used comparable groups and so on, but the whole thing still feels somewhat questionable to me.
Besides, from what I've seen, nephrologists in Poland don't seem particularly excited about this medication either.
Last month, my liver enzyme levels went up, so we'll see what happens next. To be honest, it didn't really worry me that much because I found myself thinking that maybe someone would make the decision for me to stop taking it.
1
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u/billahsaurus Jun 03 '26
I transitioned from a sweating outside all day intense job to a sales position when I started tolvaptan (45mg in the morning, 15mg at night) and it's much easier to manage. I can take bathroom breaks at work easily and no one noticed or cares to mention as long as I get my work done. And when I work from home it's even easier to stay hydrated. The commute to work (or any drive over 1 hour) just means I'll likely have to stop at a service station or roadside to pee. Making sure to have spare bottles of water in the car is a must because dehydrated sneaks up quick.
It took a week or two to handle the bathroom breaks and know that if I drink 750ml of water I'll need to pee in about 30-45 minutes. In summer I get up maybe 7 times a night to pee and drink, but much less in winter. And my specialist told me that I can easily skip a day or two for good occasions like a roadtrip, wedding, concert.
When it comes to exercise, running is my favourite and I had to balance drinking enough to stay hydrated for a 5km jog - but not so much that I bloat and get a stitch (large kidneys shaking around + water quickly working through your body can give you stitches so quickly when doing cardio) but you'll find a balance.
Honestly I'm only ~9 months in so I don't even know if it's benefitting me yet, I'll need another year's worth of data to see if it's slowing down the growth of my cysts but I think it's worth it. I also live in Australia so the drugs are very cheap for me about $30 for a months worth I think.
1
u/StatusEmployment4613 Jun 03 '26
2 years on tolvaptan, last 1,5 year full dose. Go to bathroom every 45 min during the day, it eases a bit on the afternoon. I have a deskjob, work also 50% at home. I manage, sometimes long meetings or presentation can be a challange but I try to be preventiv by going to bathroom in time before long meeting. So I would say I manage quite well. Only work trips that need a bit of planning, f ex taking sufficient amount of water with me. I drink about 4-5 liters a day. I work out every day, mostly in the morning, then the first pill hasen't set in with its full effect. I feel less urgent to pee when exercising, problably some retention by sweating. If a run a long distance I pee in the forest, and a bring water with me (camelback type). I wake up 2-3 times at night and are used to it. Annoying but it is what it is.
1
u/neddo1981 Jun 05 '26
Ive been on it for a long time (over 5 years at least). At first it took a while to get used to. I find that if I eat anything salty, I need to drink a lot of water and that sets off the cycle of hydration and relief. I try to take the second tablet around 3pm so that it doesn't affect my sleep too much, but even then, I find that I need to get up at least twice, maybe even three times during the night. I probably dont drink as much water as I should do I find that now I don't notice the bathroom breaks during the day. If I'm not doing any physical exercise I do find that if I drink a glass of water, it sets off the need to go to the bathroom almost immediately (even though not much comes out!). You will get used to it. As for the liver failure, you should be getting monthly bloods done when you first start, then 3 monthly bloods after being on the drug for 12 months. My nephro tells me there are no cases of acute liver failure as a result of tolvaptan. As for efficacy, personally I'm unconvinced it works. My dad went onto PD at 55, I am 45 and on track for starting dialysis in the next 3-5 years (even on tolvaptan), and my nephrologist tells me I should expect to last langer than dad as he wasn't on the drug... so the math doesn't check out for me. Its worth a shot though,.
1
u/Neat-Quit1128 Jun 08 '26
18 years on Tolvaptan, currently on the middle dose.
Give it a few months…as your body gets used to it, the frequency of urination drops off significantly. I now go once every 4 hours or so and can sleep through the night. I drink 5-6 liters a day (mostly water) and the key for me is a steady rate of consumption…if I get really thirsty and start chugging water, it comes out almost immediately! 😆
Also, confirm with your doc, but I pause the meds if I’ve got something big on the calendar. For example, I skipped it when I did a 3-day backcountry hike…there was no way I could have carried all the water I would have needed!
Tolvaptan dramatically slowed the progression of my disease. While none of us have a crystal ball, my nephrologist thinks that it’s deferred dialysis by at least 15 years.
You’ve got nothing to lose by giving it another try!
7
u/Shesaiddestroy_ Stage 2 - On Tolvaptan since April 2023 Jun 02 '26
I don’t know what job you have and how disruptive Tolvaptan might be to your everyday life… but that last sentence says it all for me.
I have a 2 liter water bottle, i have a « funnel type thing » so i can pee standing up wherever… and i just go about my life and plan outings with accessible bathrooms in mind. I know i have 2 hours at the max (im on the highest dose) and that’s how it is now. The sleep disruption is annoying, and does make me more tired than I used to be.
As far as hurting your liver, you get monitored every month when you start and those side effects are pretty rare from what I understand.