Tolvaptan

Hi. Just been to see my renal specialist yesterday who is amazing, and she is suggesting that would be a good candidate for Tolvaptan, I'm a 47 year old female with extremely large kidneys & GFR of 42 with many other complications.

I would be really interested to hear from anyone already on this drug, what the daily impact on your life is of takeing this drug, are the side effects tolerable and manageable, are you able to still work how long you may have been on it.

Anything that might help me make my decision, she doing a number of test first but based on my last scan she thinks I will meet the NICE criteria.

Many thanks

Jan

2 Replies

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  • Hi Jan,

    Im 32 diagnosed with pkd 2 years ago. I got told by my nephrologist that I would be a good candidate for tolvaptan but then they said I not progressing at a fast enough pace to have it. the only side effect I was told of was extreme thirst.

    Dean

  • Hi Dean

    Thank you for replying, I'm sorry to hear that you have been diagnosed with PKD, I hope you are managing to keep yourself well, although you are young and they are learning more and more about this disease, it good news that you are not progressing fast, you need to do all you can to keep it that way. Do you have a family?

    My last scan showed that my kidneys are now over 21cm long and I have one particularly large cyst of 11.5cm, so doctor feels I'm started to progress fast, and my GFR is all over the place. They are gonna do another scan, fingers crossed that I can at least try these meds to slow this disease down.

    All the best

    Jan