I was asked in another thread to share how Tolvaptan has made me feel better.

First off, I've been in the Tolvaptan clinical study for about 3 1/2 years. The first three years was a double-blind study where, as it turns out, I was taking a placebo. After the three year study I was moved to the next phase where I would be guaranteed the real drug. I've written extensively in other threads about this transition and the study.

I started taking the real drug about six months ago and Tolvaptan helped me feel better immediately in two ways along with a few other ways later. I has also had some bad sides to it as well.

First, before taking it I had a worsening feeling of body aches and lethargy. I call it body aches, but what it really was is hard to explain. My best explanation is that feeling I would get when seriously lacking sleep to a point when entire my body would hurt, but it was constant regardless of how well I may have slept. It created a real challenge for me to get up and move, or do anything.

Upon starting Tolvaptan the problem dissolved pretty quickly. I had an occasional bad day, but now that problem is nearly non-existent.

The second way it help me was with horrible gas pains. I could hardly eat anything without getting very painful bloating and gas pains that would not pass.

I'd like to think that it helped by reducing my kidneys size, but it probably has more to do with all the water helping move food through my digestive track.

Resolving these two issues alone has made taking Tolvaptan worth it. I simply feel like I'm getting better instead of worse, but we'll have to wait for my next tests to know for sure.

I've also had a couple people comment that my skin is looking much better. Not that it was bad or anything, but one person compared it to the glow of a pregnant woman. Not exactly what a guy that's built like a pregnant football player wants to hear, but I'll take it as the compliment it was intended. I've been told it is because of the large amount of water I consume and not directly from Tolvaptan.

Now the bad, Tolvaptan makes me pee. A lot. I mean, A LOT. And because of that I must drink a lot of water, and I mean A LOT of water.

Over the course of a normal day I drink about three (3) gallons, or 12 liters, of water per day. Others on Tolvaptan warned about drinking fruit juices and hard candies. I avoided those from the very beginning quite well. However, some juice or soda can be so delicious at times I can't begin to describe them without using terms reserved for ecstasy.

When I wake up in the morning I make that bathroom stop like everybody else. Then I splash water on my face, and OH MY GOD does that feel sooooooo good.

Next I take on some water as quickly as possible. It isn't just drinking, it is guzzling, chugging, getting as much in me as fast as possible. It's taking on water. I easily consume at least a quart, or one liter, of water at once. I then continue to consume another liter over the next 30 minutes or so while I eat breakfast.

After I shower and get dressed I take on more water. After all I haven't drank anything while getting ready.

I take a water bottle with me everywhere and I have to pee about every hour. This isn't always a casual while-I'm-walking-by-the-restroom-I-might-as-well-stop sort of thing. It can often be a "I'm sorry I'll have to call you back" get-out-of-my-way-or-I'm-going-to-wet-myself sort of thing. Usually when I start getting the urge I head to the restroom without the need to rush. It is just so often.

At night I've found it can be difficult to sleep if I didn't drink enough water the day before. Otherwise I have to getup about 1-2 hours after going to bed then about every two hours to pee. I keep bottled water in the bathroom, which I drink whenever I'm up. I keep the water in the bathroom to keep the disruptions to myself as best as possible.

My best nights have me getting up only twice. My worst night had me up six times. The study told me their goal is no more than twice. Typically I'm up three times per night.

I'll be honest, it sucks. But I've learned that when I have to go pee during the night not to fight it. It isn't going away, so as soon as I awaken with the urge I get up and go, take on some water, and back to bed. I do as little as possible to prevent my mind from racing. I don't put on my glasses, and I am blind as a bat without them. I don't turn on any lights, but I do have a couple night lights to help. All this seems to help as most mornings I can't remember how many times I had to get up.

This is where Tolvaptan becomes ugly. The need to drink water and to have it with me constantly combined with going to the restroom is relentless. If I need to walk down the hall at work I have to prepare first, go pee and fill my water bottle. If I know I have to make a long phone call I have to prepare, go pee and fill my water bottle. No matter what I'm going to do, I have to prepare.

I went to a museum while on vacation and I had to get permission to bring water in with me because they didn't allow food or drinks.

I have a situation at work coming up where it will be difficult to get to a restroom for a couple hours. This caused my employer to organize a meeting to figure out a way to help manage the situation.

Can you imagine how humiliating it would be for your work place to have a meeting to figure out how you can go pee? Of course there were the jokes like: How about a catheter? A bucket?

Obviously everybody has to go, but this isn't funny to me. For me it is a cycle that is non-stop. Hour after hour. Day after day. Month after month. It will never stop for the rest of my life.

The word "relentless" never had depth of meaning as it does now. Accepting this has been very difficult for me.

Would I start taking Tolvaptan again if I knew all this, or recommend it to another PKD patient?

Without hesitation.

Perhaps my opinion will change later, but for now, thank God for the researchers who came up with Tolvaptan.