PKD Charity for Autosomal Dominant PKD
600 members124 posts

I have ADPKD and have been on the TEMPO study since 2007 - anyone out there like me?

I don't know how much impact Tolvaptan has made on the size of my kidneys and cysts because I haven't seen the MRI scans since I started but I do know that my kidneys are larger than they were. My serum creatinine has been gradually going up but perhaps it is going up more slowly than it would have without the drug trial.

What are your experiences with this trial drug?

8 Replies
oldestnewest

Hi, I haven't been on the trial but know a few people who are still taking it. Tolvaptan doesn't stop the kidney cysts growing but does seem to slow down the rate of growth.

Are you in the UK? Would you be interested in helping us with gathering statements from people who were on the trial?

Reply

Yes I am in UK and would be happy to help. I have been on the trial from the beginning in 2007. I think it is a great drug and I am convinced that it does slow the cyst growth but I don't think it is a complete solution.

Reply

Thanks very much! Can you send me an email to the charity with your contact details? Email info@pkdcharity.org.uk

BW

Tess

Reply

Would you please let me know if you had any side effects while taking toplavan moreover what's your daily intake of doses as I'm going to start its usage & just want to be sure about my decision.

Reply

It does slow the growth of the cysts by about 30% on average from MRI stats, that may not be a great deal but can help slow it down enough to reach the next potential treatment

Reply

Thanks Scott, I have now had to move on to the next set of options which at the moment is just blood pressure control! And will be going along the nephrectomy, dialysis and transplant path. But perhaps the Tolvaptan delayed this for me a bit.

Reply

Hi - The only side effects that I have had have been that I am always very thirsty and seem to crave citrus flavours. I drink a lot more than most people and pee a lot. It really helped me with respect to general pain in my kidneys.

I found that glasses of iced water were a great help for the thirst symptoms.

Good luck, I would definitely go for it.

Bunty

Reply

Thanks a ton

Reply

You may also like...