Tolvaptan

[JanWellcome]

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

[DeanSamson]

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

[JanWellcome in reply to DeanSamson]

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

[Stan1971]

Hi Jan - I started on tolvaptan 6 weeks ago and found the first few weeks a challenge- up a couple of times in the night, the thirst is quite bad and the constant toilet breaks! But I am eternally grateful for the opportunity and know that this is helping me going forward- you do have to plan more and you become acutely aware of toilets etc but I am coping with it - I wish you all the luck

[Bibabi in reply to Stan1971]

hi Stan I wonder if you are still on Tolvaptan and what is the side effect after longer use?

Thank you Bibi

[JanWellcome]

You should take them back to the hospital. Tolvaptan should only be taken under close supervision of a specialist nephrologist, it can be increadably dangerous and cause liver failure if your not careful, please do not give them away.

What is SIADH?

Jan

[scott123]

I have been on Tolvaptan for 3 years now, I feared taking it at first but after the first few weeks I quickly realized that its just a pill that if carefully monitored is quite safe,, carry a water bottle wherever you go, be prepared to pee and know where the toilets are, I have had no issues with it, they have a great support program from vendors for any questions, it basically buys you time to the next treatment which just might be artificial kidneys and that may come sooner than expected from what I have read, I company hopes to come to market inside 5 years from now

[cmcginily]

Hi Jan I was at your stage with large kidneys and working as a nurse when I started Tolvaptan over 10 years ago. I had a lot of renal pain and discomfort and my function was declining slowly but enough to start treatment. It was hard at first with the need to drink and wee a lot, but it was so worth it. The pain subsided my kidneys function has been slow and steady as expected. I drink 3 to 4 litres of fluid personally I can not drink more as as over dilute and my sodium levels drop. I am now 67 years old and my EGFR has hit the 20 mark but I am still fine in myself.