Good morning all you lovely PKDers out there! I have a quick question directed at any of those of you who are now on Tolvaptan. My 13 year old PKD daughter has been selected for the new paediatric clinical trial for Tolvaptan. I've done a bit of research up myself and it seems the only side effects so far are thirst and increased need to wee. Is this your experience? My daughter is naturally a little nervous. We'd love to hear your stories, thoughts and experiences so she can decide. She's excited at the thought of being a 'trail blazer' for other children (including her own little brother and cousins), but she's scared that there maybe other unwanted side effects. We'd love to hear from you experienced folk! Xx

8 Replies

  • I think it sounds like a great idea. The only side effects that I was affected by was being very thirsty (which you do get used to) and needing to pee frequently (and you get better at coping with that too).

    If she starts on it at her age then the progression of the kidney cysts is likely to be slowed for most of her life so it should make a huge difference to the length of time that her kidneys will be working well.

    Good luck

  • That's what we are really hoping! Its great to hear that there have been no other side effects - that's pretty amazing! How long have you been on it? Thanks for sharing by the way! Xx

  • I was on it for 8 years in the initial trial and subsequent trials. I am off it now because my kidneys have eventually progressed, but I am 55 years old and was one of the oldest people to go onto the trial in the first place. If I could have gone onto Tolvaptan when I was in my 20s who knows how much better my kidneys would be now?

  • I'm so sorry to hear that. Do you mind me asking what kidney function you had when you were first given the drug, and what stage are you now? It's impossible to say I guess as to how much it's actually helped slow the process. I hope everything goes well for you. My oldest brother had both his kidneys removed about 5 years ago (aged around 55), was on dialysis for a year until he had a transplant, and although the process was tough, he's had a new lease of life. He's fairing now better than he has for years and years regarding energy and general health. It's a joy to see and gives us, following up behind him such reassurance and hope.

  • That is very encouraging to know - thanks.

    I think I started when my EGFR was around 40 and stopped when it dropped below 30. We can't tell how much it helped me individually because there is nothing to compare with but I do think it helped and the clinical trial results also show that it helped everyone on the study.

  • Just thought you'd be interested to know that my daughter has decided that she's going to do the trial. Can I ask you just one more question...? So when the side effects are the thirst and weeing, what does this mean exactly? How much were you drinking and thus how often were you having to go to the toilet? I try to drink at least 3ltrs a water a day and tend to then need the loo at least every 2 hours. I always go at least once during the night. So would Tolvaptan basically make you do the same as that? Just trying to get the measure of how much it's likely to affect her at school.

  • I think I was probably drinking about the same as that but I didn't like to go anywhere without a bottle of water and I used to sip at it quite often because I was thirsty. I also found that an ice cube was really nice. Once my system got used to it I needed to find a loo every two hours or so and I needed to pee once or sometimes twice a night.

    Good luck! It is quite easy to get used to.

  • Hi, I am new to this I see your 13 year old daughter have PKD I have a baby that was born with it. Was your daughter born with it? I am learning about it as he grows and it progresses. Just looking for other mom's with children with this and or people born with it as I was told that when you are born with it, it progresses faster then developing it later in life.

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