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.
I started taking Tolvaptan almost two weeks ago, as part of the clinical trial "Tempo 4/4."
I'm now on the second dose without any real difference from the lowest dose. The dosages are 60mg, 90mg, and 120mg per day, so I am on 90mg for a few more days. After that I'll be on 120mg unless I cannot handle it. The dosages increase weekly for three weeks.
The medication is given as a large dosage in the morning and a smaller dosage in the afternoon, for example the large dosage, totaling 120mg, is given as 90mg in the morning then 30mg in the afternoon. This is done to minimize the need to pee at night.
What I'm told "not handling" means is whether I can handle urinating and drinking water as frequently as needed. For example, I was told another participant in the study is a surgeon and he could not leave while in the middle of a surgery to pee. Therefore, he was changed to a lower dosage. This shouldn't be a problem for me, however I have never noticed how often I am interrupted while on the way to the restroom.
I am drinking a lot of water and peeing quite frequently. I keep water near me as much as possible, such as taking a bottle with me when grocery shopping. Normally I would say I drink between 0.5 to 1.0 liters per hour, or about 17 to 34 ounces.
I'm finding that if I neglect drinking water for about an hour I start to feel it in a bad way, such as headaches, dry mouth, baked sinuses, and overall feeling lousy.
The need to pee comes on fairly quickly. Those times in the past are over when I was, for example, out shopping and I felt the urge only to wait until the next convenient location. Instead, when I feel the urge now I may be able to finish what I'm doing. Case in point, I was hoping to finish writing this before I go pee, now I'm hoping to just finish this paragraph.
I couldn't wait.
Before I started taking Tolvaptan my urine was consistently a dark color. Now it is all but clear.
I have to get up one to three times during the night to pee, which also gives me the opportunity to drink more water. I get it over as quickly as possible instead of laying in bed and fighting the urge. Getting back to sleep is much quicker and easier.
By time I get up in the morning I feel so dried out I wish I could jump in a swimming pool. It feels sooo good to splash water on my face. What I wouldn't give to go on vacation to the ocean right now!
For the most part I feel amazingly better. However, I've experienced a few "swings," where I suddenly feel worse. Such as, achy, lethargic or tired, and generally lousy. Perhaps a good description is flu like.
I haven't been able to identify what triggers these "swings." I suspect they are related to what I've eaten, the amount of water I consume, activity, or perhaps a lack of one of those.
The swings have lasted 10-15 minutes to a few hours. Eating something sweet and drinking water seems to alleviate them. But when they happen it is like hitting a wall.
I've been off work for a couple weeks and return after one more day off. I'm a little concerned about having a supply of "good" water nearby. At home I have well water and I work in a small village close to home that essentially has the same water.
I just had to go pee again.
Anyway, the water in our area is quite hard, requiring water softeners, which makes me worry about toxins, especially considering the volume of water I'm consuming with kidney disease.
I can't document it because I didn't write down any measurements, but I'm convinced my abdomen has shrunk. I question myself though because it has only been a couple weeks. At the same time I'm not feeling so bloated and I can actually pass gas now (I know, TMI), and while standing in the kitchen one day I was actually asked if I was "sucking in!"
I have a lot of "getting used to it" yet, regardless I'm feeling very optimistic about it.
I'm now on the second dose without any real difference from the lowest dose. The dosages are 60mg, 90mg, and 120mg per day, so I am on 90mg for a few more days. After that I'll be on 120mg unless I cannot handle it. The dosages increase weekly for three weeks.
The medication is given as a large dosage in the morning and a smaller dosage in the afternoon, for example the large dosage, totaling 120mg, is given as 90mg in the morning then 30mg in the afternoon. This is done to minimize the need to pee at night.
What I'm told "not handling" means is whether I can handle urinating and drinking water as frequently as needed. For example, I was told another participant in the study is a surgeon and he could not leave while in the middle of a surgery to pee. Therefore, he was changed to a lower dosage. This shouldn't be a problem for me, however I have never noticed how often I am interrupted while on the way to the restroom.
I am drinking a lot of water and peeing quite frequently. I keep water near me as much as possible, such as taking a bottle with me when grocery shopping. Normally I would say I drink between 0.5 to 1.0 liters per hour, or about 17 to 34 ounces.
I'm finding that if I neglect drinking water for about an hour I start to feel it in a bad way, such as headaches, dry mouth, baked sinuses, and overall feeling lousy.
The need to pee comes on fairly quickly. Those times in the past are over when I was, for example, out shopping and I felt the urge only to wait until the next convenient location. Instead, when I feel the urge now I may be able to finish what I'm doing. Case in point, I was hoping to finish writing this before I go pee, now I'm hoping to just finish this paragraph.
I couldn't wait.
Before I started taking Tolvaptan my urine was consistently a dark color. Now it is all but clear.
I have to get up one to three times during the night to pee, which also gives me the opportunity to drink more water. I get it over as quickly as possible instead of laying in bed and fighting the urge. Getting back to sleep is much quicker and easier.
By time I get up in the morning I feel so dried out I wish I could jump in a swimming pool. It feels sooo good to splash water on my face. What I wouldn't give to go on vacation to the ocean right now!
For the most part I feel amazingly better. However, I've experienced a few "swings," where I suddenly feel worse. Such as, achy, lethargic or tired, and generally lousy. Perhaps a good description is flu like.
I haven't been able to identify what triggers these "swings." I suspect they are related to what I've eaten, the amount of water I consume, activity, or perhaps a lack of one of those.
The swings have lasted 10-15 minutes to a few hours. Eating something sweet and drinking water seems to alleviate them. But when they happen it is like hitting a wall.
I've been off work for a couple weeks and return after one more day off. I'm a little concerned about having a supply of "good" water nearby. At home I have well water and I work in a small village close to home that essentially has the same water.
I just had to go pee again.
Anyway, the water in our area is quite hard, requiring water softeners, which makes me worry about toxins, especially considering the volume of water I'm consuming with kidney disease.
I can't document it because I didn't write down any measurements, but I'm convinced my abdomen has shrunk. I question myself though because it has only been a couple weeks. At the same time I'm not feeling so bloated and I can actually pass gas now (I know, TMI), and while standing in the kitchen one day I was actually asked if I was "sucking in!"
I have a lot of "getting used to it" yet, regardless I'm feeling very optimistic about it.
lots of love,
Norma....