Polycystic Kidney Disease (PKD) Support Group

There are preparing an international clinical testing for a new drug called Tolvaptan. They are signing up guinea pigs as we speak. Supposedly, the drug is meant to drain or shrink the cysts.

I understand the need to want to pop them. My friends and I had gotten poison ivy on us. My shins looked like bubble wrap. Doctor gives a cream and says, "Don't touch them.". The itch was unbearable, so I popped and popped until my shins were covered in yellow ooze. I washed up and bandaged my legs. Funny thing was that I recovered about a week ahead of my friends.

other than the experimental drugs some people have their cysts drained but that is temporary solution as they fill up again and the draining can cause infections

Hmm that is interestin to hear about this medication. Wouldnt it helps while taking this medication to take antibotic for 7 to 10 days to prevent infection?
I understand and agreed with you waterrat. I grew up with old fashion medicine with my gramma. One thing she does insisted that being very clean and keepin it clean when it comes to infections. I always have a supply of alcahol and peroxide or calimine lotion in stock.

sorry I think if you mean what I wrote I have not been clear ,they dont give medication to drain them ,they put a needle in to drain them and that is why they are prone to infections ...because the cysts leak...and often are filled with blood so it causes all sorts of problems but can give some releif for a short time.

I understand stephanie. It make sense about the bleeding. Years ago I had an ovarian cysts rupture. What was weird about it that the other cysts would absorb the fluid from rupture cyst. I had one that was 9cm that grew to 12 cm. Oh well we can only pray that they will come through with medication. Im willingly to try anything. Just to live painfree for a bit.

Lettetalk, I understand the urge to want to get rid of them but stephanie was both right and wrong. She was right about if a cyst leaks or burst it can cause all sorts of problems, but she was wrong about the relief you will get. You may be relieved spychologically but physical relief would be non-exsistant.
I was born with PKD and my doctor recently asked me if i wanted to participate in the study for tolvaptan, but i dont know if i would want to be a guinea pig for long-term effect testing. It could be more damaging to other areas of our body and also heared that it could have a negative effect on our reproductive system.
If the cysts are becoming bigger it could be because of stress, straining your back to much by lifting heavy things, or even could be caused by your diet. talk to your doctor about keeping their growth under controle(ex: less salt intake, drinking more water, relaxation methods, and its very important not to lift anything heavy)
Hope all goes well for you!

I am trying and hoping for the Tolvaptan trials. My dr looked at draining the cysts but because I have little to no areas of normal tissue they could not do it. Because the cysts form on the filters of the kidney, you end up killing those parts of the kidney by doing this. They cannot tell if those filters are working or not and the risk of them killing functioning tissue is very high. They used to do this much more often, I was told they rarely do this anymore. He basically said I could come out of the surgery on dialysis so he would not do it.

I'm participating in the Tolvaptan study. I am in month 12 of the 3 year FDA approved fast track. The drug is approved for congestive heart faliure and they found this "bonus" benefit a few years ago. It is essentially a diuretic in the simplest sense. I believe I'm not getting the placebo based on my side effects of increased thirst etc. I will hope to keep this board updated on my progress. I will get my comparision MRI sometime this month!