Hi najia, welcome to the group. Tolvaptan has been licensed in England for those with PKD stage 2-3 with rapidly declining function. These are not the best criteria in my opinion, but who am I to say?! As you say, the aim is to maintain good function, so why wait until it's rapidly declining. These criteria reflect the testing and demonstrated effectiveness, however. The drug has not been tested in those at stage 4+, and that's probably rather too late anyway. It is also untested in those aged 50 and over. There are side effects, but if you tolerate them and it gives you several years more with good kidney function, I think it's worth a go. I decided against it because I am at stage 4 now and would probably gain only a few months grace before needing renal replacement therapy. I'm also nearly 50 and already have a difficult time with frequent urination, which Tolvaptan is known to cause. You have to drink a lot, which I'm not sure I could manage. Thus is crucial, as you become very dehydrated if you don't drink enough. For me, it's about quality of life now as much as anything else.

With blood pressure, many doctors, but not all, tend to want to keep our blood pressure a little lower than the generally accepted norm. What is your BP?

As for marijuana oil, I'm afraid I know nothing about it.

Interesting! I'm in Canada. I had this discussion with my nephrologist yesterday. I'm still stage one and my kidneys are very large. Why eGFR is about 112. As far as Tolvaptan goes she doesn't think the side effects would outweigh the benefits for me. She also mentioned the blood pressure medication study. My blood pressure is great so she did not recommend starting me on blood pressure medication... it's confusing isn't it? I haven't heard anything about marijuana oil.

I have not heard of marijuana being used to slow the progression of PKD, but it is definitely recommended to treat PKD related pain