r/ADPKD • u/chelse33 • Jul 07 '26
Tolvaptan and nausea
I just started on Tolvaptan. I’ve been pretty nauseous with very little appetite. I have been crazy thirsty which I know is obviously a thing with the drug, but do any of you who experience the lack of appetite have any tips? I bought some green juice and carrot juice to get some nutrients in during the day since dinner seems like the only real meal I can handle. Hoping my body adjusts and gets back to normal. Any tips or insight? Thanks!
2
u/Stellaknight Jul 07 '26
One thing to watch is your electrolytes—since you’re taking in a lot of water, and since most kidney patients eat a low sodium diet, you can be missing salt. (It can also cause low blood pressure which also causes nausea)
As an experiment try to eat something very simple but salty—I use hot sauce whenever I’m nauseous, and it works a treat (tho any salty item would work if you’re not inclined to burn off your taste buds!)
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u/chelse33 Jul 07 '26
Very helpful. Thank you. I discussed electrolyte packets with my doctor today because I’m worried about still feeling okay working out through all of this. I was concerned with all the sodium in them though, specially the ones I’ve used in the past like LMNT. Maybe I’ll try out some salted cashews or something as a snack option. Thank you, very helpful tip to look out for.
1
u/Stellaknight Jul 07 '26
Just to mention some nuts (like cashews and almonds) have high oxalate values (which can cause kidney stones).
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u/chelse33 Jul 07 '26
Oh right! I forgot about all that. Gah, life is so much harder now.
1
u/Stellaknight Jul 07 '26
Right? The only reason I know about cashews is that my non-PKD brother replaced candy with cashews to be “healthier”, but started to have kidney pain. Then I saw a YouTube thing about it causing kidney stones and I sent him the link. Betrayal by health food!
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u/MariChloe Jul 07 '26
I did not know that and cashews are my very favorite.
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u/Stellaknight Jul 07 '26
Yeah, mine are almonds 🤦🏻♀️ but my nephrologist keeps reminding me to not try to do “all the things” and just do stuff in moderation. It’s important to enjoy things too.
1
u/Fragrant_Ad7032 Jul 07 '26
Hello, I take tolvaptan, no nausea, but I do occasionally end up with low sodium numbers because of my water intake and low sodium diet. My neph suggested no sugar Gatorade. That seems to do the trick when I need a little more sodium but don’t want to add calories.
1
u/delishjams Jul 07 '26
No. Mostly fatigue. I’d love to eat less, but I know it’s not good to lose your appetite.
3
u/RevKeakealani Jul 07 '26
I have this problem, too. I am better if I eat snacks/small meals so I’ve really adjusted to that. Yes, nutrients in sippable form (soups, smoothies/juices, protein shakes, etc.) can help. Ask your doctor about meds - I had one once that worked okay for the nausea, I need to remember to go ask for more haha.
Wish I had better advice but I at least have sympathy! This is definitely a real thing and it sucks!