I started Tolvaptan 10 yrs ago as part of the clinical trial. Most notable side effects are thirst and passing urine more frequently and that does mean at night. You do though learn to cope with it. One of the most amazing things was that within 2 weeks I felt so much better. My swollen stomach had started to reduce in size. As PKD is a chronic disease you get used to feeling unwell without realising how bad that is, Tolvaptan made me feel so much better, I am so pleased that this is now available widely
Yes I have continued my life as normal. I can tell you as part of the trial I am asked if I would be happy to take Tolvaptan for the rest of my life and my answer had always been yes. Make sure you always have a drink nearby to deal with the thirst which is going to be more noticeable at the beginning. I am sure you will be fine and you will soon feel the benefit of it
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I’ve been on it 10 months and doing really well, you have to make sure you drink plenty, in a 24 hour period I drink upto about 6 litres, this in turn does mean you pee a lot, I have just had a week off because of flu, that is the one thing I noticed but I was also dehydrated.
I have always felt better on tolvaptan, even thought to start it took a lot to get my head around, but you get used to the negative impact it has, which is worth every ouche I drink.
My kidney function has recovered from a GRF of 35 to 40 and has remained steady for 8 months, I still have problems but I have a chronic illness, but I feel better on tolvaptan and make me feel like I’m fighting the disease.
Yes that helped a lot. Thank you so much for that. I actually start it tomorrow morning . All the comments and information on her has me approaching this informed with tips I would never have known unless I had put it out there on here
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