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 yesterday as part of the clinical study I'm in. I have nothing but good news.
First, I asked if they have actually see a reduction in cysts in patients in the study. Their response was, "Absolutely. But not every patient."
They also measured my belly for the first time. I can't wait to see what happens there!
My first week consists of 60 MG per day. Next week will be 90 MG per day. Then the 3rd week will be 120 MG per day. If at anytime I can't tolerate it they will lower me to the previous dosage. They did say that I will want to take the highest dose possible. I'm ready!
The medicine is given as three pills in the morning then one in the afternoon, around 3 or 4 o'clock.
I have experienced some slight kidney pain about 30-60 minutes after taking the pills every time I've taken them so far. It is quite tolerable.
I get some slight headaches that are quickly resolved by drinking water.
I'm drinking a lot of water. The thirst isn't bad yet, but it can start to get demanding. It'll be curious to see what is like when the dosage increases.
I'm peeing about every hour to two hours. Twice during the night. It wasn't as disruptive to my sleep as I expected. I knew it was going to happen, so when I woke up I just got it over with. In the past I'd think I could wait so I'd try to fight it. Also, I put some bottled water in the bathroom. It all went quick then I was back to bed.
I've had this euphoric feeling. I'm not sure what that is about, but I'll take it.
I lost five pounds between yesterday morning and this morning. I don't feel that I'm not drinking enough water, so I'm hoping I was just retaining water. My ankles aren't as swollen, by the way. I'm going to call on this just to be safe.
My blood pressure is down slightly. Not enough to get excited, but I'll take what I can get. Both numbers were down almost 10 points. It is early though, so I'll keep an eye on this.
It has only been one day for me, but my conclusion: We now have hope.
Merry Christmas.
First, I asked if they have actually see a reduction in cysts in patients in the study. Their response was, "Absolutely. But not every patient."
They also measured my belly for the first time. I can't wait to see what happens there!
My first week consists of 60 MG per day. Next week will be 90 MG per day. Then the 3rd week will be 120 MG per day. If at anytime I can't tolerate it they will lower me to the previous dosage. They did say that I will want to take the highest dose possible. I'm ready!
The medicine is given as three pills in the morning then one in the afternoon, around 3 or 4 o'clock.
I have experienced some slight kidney pain about 30-60 minutes after taking the pills every time I've taken them so far. It is quite tolerable.
I get some slight headaches that are quickly resolved by drinking water.
I'm drinking a lot of water. The thirst isn't bad yet, but it can start to get demanding. It'll be curious to see what is like when the dosage increases.
I'm peeing about every hour to two hours. Twice during the night. It wasn't as disruptive to my sleep as I expected. I knew it was going to happen, so when I woke up I just got it over with. In the past I'd think I could wait so I'd try to fight it. Also, I put some bottled water in the bathroom. It all went quick then I was back to bed.
I've had this euphoric feeling. I'm not sure what that is about, but I'll take it.
I lost five pounds between yesterday morning and this morning. I don't feel that I'm not drinking enough water, so I'm hoping I was just retaining water. My ankles aren't as swollen, by the way. I'm going to call on this just to be safe.
My blood pressure is down slightly. Not enough to get excited, but I'll take what I can get. Both numbers were down almost 10 points. It is early though, so I'll keep an eye on this.
It has only been one day for me, but my conclusion: We now have hope.
Merry Christmas.
It would be great if it would help cysts regardless of where they are in the body. I have a large cyst in my sinus located in my cheek. I don't think it is a problem for me, but it would be nice to eliminate it.
In another thread you mentioned the fast heart rate when you tried a different exercise routine. Also in pkdcure.org they mentioned to avoid stress that would increase adrenaline. I had very bad palpitations years ago and they discovered Wolf's ...syndrome. They did a cardiac ablation to cure it. I no longer need the care of a cardiologist but I know my limitations when it come to exercise. I'm happier doing stretches and long (for me anyway) 2 mile walks each day. I do ski.
Glad you are doing well in the Tolvaptan study.
I've actually been researching the correlation of protein and kidney disease. In fact, I'm starting to feel like I'm back in college writing a term paper.
Quite frankly I would rather not give any information rather than give out mis-information. Therefore, I've been waiting to see my nephrologist on Thursday evening to discuss it with him and verify my understanding is correct. Protein as it relates to our PKD kidneys is quite complex. I'll pass some info along as soon as I'm comfortable.
I exercised again and haven't had the heart rate problem.
I also stretch (yoga) and ski, although I'm growing a little impatient with mother nature. We need snow!