Hello
I have PKD and I’m 60
I was diagnosed at 16 but in general great healthy though I have brain aneurysms aswell
Today I have got my recent blood results and to my dismay and panic my kidney function has dropped from 59 to 46!!
I’m utterly terrified and fear I may be put on Tolvaptan
Any comments of other people experience on this medication or advice would be very much appreciated. I understand there is huge quantities of consumption of water involved!!
Thanks Andrea Beesley
Hi, Firstly don't panic. If you have to start taking Tolvaptan I can tell you that in my own experience the side effects have been minimal.
Of course it can effect people differently but I have only experienced weight loss, slight dizziness (when standing up too quickly ) and thirst.
Yes you do have to keep up water intake.
But I still work full time ,exercise daily and do mostly what I like.
Having said that I have stopped drinking alcohol but I feel better for it.
Thanks Spacace for your reply
Ive heard a few horror stories but as usual side affects if and, are different for everyone.
I’m hoping the recent result is a ‘one off’ especially as I had recently suffered an upset stomach prior to blood test.. perhaps it had upset things!
No doubt there will be another blood test to see if there’s a trend and hopefully my hard work of drinking a lot between now and then will sort it out.
I’m glad it works well for you and it’s a good idea to give up the drink I guess
Regards
Andrea