Tolvaptan Clinical Trial for ADPKD Patients

[cmaxwell78]

April could be the month people with ADPKD have been waiting for.

For the last two and a half years, I've been participating in the Phase 3b clinical trial of Tolvaptan to determine its efficacy and safety for patients in Late Stage 2 to Early Stage 4 Chronic Kidney Disease due to Autosomal Dominant Polycystic Kidney Disease. I was fortunate to find out at the end of the double-blind study that I was on actual medical and not placebo. I am now in the Open-Label part of the trial which will keep me on active medication until October. What we know is that the FDA was to review the updated study findings in April and give report. It's April 23 and I can't help but watch the calendar days tick down.

"Tolvaptan slows cyst growth in ADPKD patients by preventing a hormone called vasopressin from binding to its receptor on renal tubule cells. Vasopressin is produced by the brain to signal the kidneys to conserve water; when this happens, a chemical called cyclic adenosine monophosphate (cAMP) is produced in the kidneys. This chemical has been shown to promote the growth of cysts by increasing cell division. Tolvaptan suppresses vasopressin action, which in turn reduces cAMP in kidney cyst cells, and thereby slows cyst growth." source: pkdcure.org

What I can tell you is that in over two years, my creatinine has been stable - and I am at the age (40) that my father was when he began dialysis. I am drinking 2-4 liters of water per day on the drug and you can imagine the number of bathroom trips that causes per day, but if this drug is actually doing what it claims to do, I believe it to be a game-changer for people in early stages of CKD from ADPKD to potentially change the outcome of their health.

The waiting ADPKD community appreciates your support of this effort in whatever way is meaningful to you through prayer, positive thoughts, or fingers crossed! I'll be watching the news like a hawk and be sure to share any updates!

[Zazzel]

Thank you for sharing this information and for participating in the study. Hoping for the best of outcomes for you and all who suffer from ADPKD. I hope this medication is approved and helps! Sending positive thoughts your way!

[cmaxwell78 NKF Ambassador in reply to Zazzel]

Thanks Zazzel ! I appreciate the positivity!!

[SN23]

Thank you for sharing. Praying hard for the success of the trial and for you. My very best wishes🙏🌸🌈

[cmaxwell78 NKF Ambassador in reply to SN23]

<3 Thank you!