FDA Approves Tolvaptan for Treatment of ADPKD

[cmaxwell78]

Just in! The FDA approved Tolvaptan for the treatment of ADPKD today. I'm blessed to say I have been in the clinical trial group for this drug for over 2 years and I do believe it has helped me. There is still a lot to figure out regarding pricing, dispensing, educating medical professionals, and the care plan for anyone on the drug. I'll take the win for now!

More here: businesswire.com/news/home/...

[SN23]

This is such good news. Congratulations! So happy for you and for the PKD community👍🌸

[rascal01]

wonderful news! thanks

[WYOAnne NKF Ambassador]

So happy for you and everyone that PKD! So glad it was approved by the FDA. Maybe this will help researchers find more meds for other types of kidney disease too. Great news!!

[SN23 in reply to WYOAnne]

Very true. I just read about this drug in trial in its third phase for IGAN:

google.com/amp/s/seekingalp...

[FThomp]

Hello, I know it’s been 4 years but any updates since then? ☺️

[cmaxwell78 NKF Ambassador in reply to FThomp]

As far as? I'm still taking it. Getting labs every three months. Low cost to take it as insurance covers all but $10 monthly. Happy to answer any specific questions you have!

[FThomp in reply to cmaxwell78]

Any noticeable improvements or milestones achieved since you started? I’m new to all this. My gfr dropped from 92 to 70 in 10 years but I’m only 28 and never treated any issues until I actually researched my past blood tests. What’s weird is my creatinine and bun levels remained stable all those years within the “acceptable” range but I’m working to lower blood pressure at the moment. From what I understand this medication is only for APKD?

[cmaxwell78 NKF Ambassador in reply to FThomp]

My gfr has continued to decline over the 6 years I've been on it but there is really no way to know if it would be a more steep decline. Based on my father's age at transplant and where I am at the same age (early stage 4), my Nephrologist and I are happy with calling my disease stable on the medication. If you are at risk for rapidly progressing ADPKD, I believe it's worth looking into!