Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Slickrock 12/06/2011

I went in yesterday for my tests for the Tolvaptan clinical trial I'm on. I'm just fining one phase of the trial and moving to the next phase where I'll absolutely be given the real drug. I was told I've been on the placebo. However, they also told me that the results have been extremely positive for the patients who have been on the real drug. In fact, they said, "we believe that once you start taking Tolvaptan that you will never need dialysis or a transplant."

Keep in mind Tolvaptan is in a clinical trial likely for a few more years and could be found to be unsafe, although everything for it is looking quite well right now. While I don't want to cause any false hope, they were very confident about the results I could expect.

By the way, the doctor said there is a different study starting in January or February and asked me to tell anybody else I know who has PKD. I don't know any details yet, but I will pass it along as soon as I know.

deleted_user 12/07/2011

thanks for the update and please inform us when you have more info.
its way too late for me, having been through the gamut of PKD, but for my children and grandchildren I thank you.

deleted_user 12/07/2011

My nephrologist told me about an ongoing clinical trial that some in his office, his patients are going through. It is in phase 3. It is a combination of 4-5 drugs that is testing the ability of the colon to remove toxins that failed kidneys can't. He wrote down on a paper for me this: Kremezin,
AST 120. Mitsubishi Tanabe Pharmaceutical Phase 3 Trial. He says it seems to be helping but you have to take more than one drug.

That's encouraging about Tolvaptan.
Keep drinking plenty of water while we wait!
Thanks for the update.

deleted_user 12/13/2011

that is exciting that something is working I meet so many doctors when my mom was in the hospital and i talked to all of them and they all said there is NOTHING to help you but dialysis and transplant I was looking for a doctor so i ask many questions

norma67 12/13/2011

Many, many doctor's, kidney doc's, etc. don't have much knowledge about PKD, sad as that may be, it is a fact of life. I see much changing in that regard, but not enough to suit me. I forsee Tolvaptan as a means to an end of kidney failure in PKD. Have no idea how long it's going to take, but I am encouraged enough that it gives me some resolve in regard to my children and grandchildren. For one thing, dialysis is very expensive and our government doesn't like things that are expensive so I am fairly certain that this is going to be one of the answers for kidney failure. It's not and end to PKD, but it could be an end to kidney failure and dialysis. I hope so anyway and will continue to pray for it and all of you and my family, as we are all different in this disease.

love,
Norma...

deleted_user 12/15/2011

does it shrink the cysts?? i am so uncomfortable would like to get rid of some of this stomach

norma67 12/16/2011

I just saw your comment about shrinking cysts with Tolvaptan as I have a lot of health issues going on in my family right now but will try and answer your question, others may know more. I don't think that it will shink the cysts but it does prevent them from getting any larger thus stopping the threat of kidney failure and dialysis or transplant. It's going to be a huge breakthrough for PKD patients, if and when it gets on the market. I have a niece that has participated in one of the trials and her kidney function stopped at 49 and has not dropped any further. This was 4 years ago, so there is some hope.
As I said before there are others that have a lot of knowledge about this drug and perhaps they will offer their comments.

lots of love,
Norma...

Slickrock 12/16/2011

I was told that it has been shown to slow, stop, and reduce cyst size.

deleted_user 12/16/2011

to my knowledge Tolvaptan may slow or even stop cyst growth, it is too soon to know for sure.
I have never heard of it shrinking cysts.

rogerjd 12/16/2011

Thank you so much for this information. I just hope tha tthis will be available to the UK market as soon as it is for the US. Both my daughters have PKD and are 17 and 20 so this would be a miracle if it worked for them.

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