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.
Meanwhile, I also fight my urge to pee during night and when I do not wake up in the night to do so, I feel very bad in the morning.
Feeling boosted after seeing your spirit..!
please don't get so overwhelmed with your good fortune that you forget to keep us updated on how you are doing. you give hope to so many.
We do have hope!
I'm drinking bottled water right now because we live in the country and have well water with a water softener. Our water hasn't been tested for contaminates, but I've been told our area may have high levels of arsenic.
I've ordered a water filter that should be here in a few days.
I've decided there is no use in fighting the need to urinate at night. It just makes me uncomfortable and makes it more difficult to get back to sleep.
I will try to keep posting updates.
For what was your belly measured?
May I ask what kind of water filter did you buy? I drink from the filtered water dispenser in our refrigerator door. I can't decide what kind I should purchase.
I just started phase 4 of 4 of the study. I started the study in phase 3. I don't know what phases 1 and 2 entailed, but I've heard about a small group of people that were at, what they named, "pee camp." I assumed they called it that since Tolvaptan causes frequent urination.
Phase three, which was actually called "TEMPO 3/4" involved a double-blind study. A double-blind study means that the patient nor the clinicians know for sure if the patient is on the real medicine or a placebo, or fake medicine. I'm sure there is a ton of additional research that was done during that phase. The researchers are given a lot of additional information by comparing those who are on the medicine versus those who are on the placebo. Take side-effects as an example; if most of the people taking the real medicine complained about a particular symptom, but none of the people on the placebo had, then it would be listed as a possible side-effect on the label.
Participation in the study required answering lots of questions, promises to not get pregnant (not a problem since I'm male), MRIs, blood tests, urine tests, getting weighed, blood pressure checks, and examined by a doctor. This was all done through three office visits per year, starting with a couple extra visits at the beginning and end of the study.
As part of the study they gave me enough pills to last until my next visit, along with extras and an exact set of lower dosage pills in case I couldn't handle the full dose. But again, I was on the placebo so it wasn't an issue.
Phase 4, or TEMPO 4/4, is essentially the same with a few minor changes. Oh, and one big change; I am unquestionably given the real medicine.
I really encourage everybody to try to get in some sort of study. It may not be the ideal study, but you never know either. It could be the one we're all dreaming of.
I ordered the Clear2o CWS100AW Water Filtration Pitcher from Amazon along with some extra filters. My decision to order that one was based on Consumer Reports, it was their "Best Buy."
I haven't received it yet.
I'd like to install a water filtration system for the kitchen faucet that I could also use to supply water to the refrigerator ice maker / dispenser. However, I feel I should have the water tested first so I know exactly what I should be looking to filter. There appears to be a huge difference between what the different brands and models can do, not to mention a wide range of prices.
"A double-blind study means that the patient nor the clinicians know for sure if the patient is on the real medicine or a placebo, or fake medicine"....I didnt get this. The patient might not be told that the medicine which he is being given is fake or real but atleast clinicians must be knowing about that?
The nurses that atend you during the tests and instructions may not know, but someboby (at a higher scale in the study) surely knows.
PKDAD
I have been taking homeopathy medicines since long time back. Never observed any kind of side effects. But nevertheless, will keep a close watch.
Love,
Norma...