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.
Hi everyone.
My nephrologist has just prescribed me Tolvaptan. I know there were positive results from the trial but the lifestyle change in terms of drinking more water and going to the toilet scares me. How are you finding it, if you are taking Tolvaptan? Does anyone take it ever have the odd glass of wine or coffee?
I would be keen to know and receive your support
http://forums.pkdconnection.org/viewtopic.php?f=3&t=146
To be honest this drug has been the best thing for me it is helping to save my kidney function with only a few minor side effects ie the drinking and the peeing even that isn’t as bad as I thought it would be.
Thank you coolp, that is also comforting and useful.
I'm going to be starting in two weeks so I'll post my progress. :)
I have been on Jinarc/Tolvaptan for almost a year (started Feb. 2017). I have been wanting to connect with someone else who is either currently on the drug or is thinking about taking it. I was nervous as well to start this drug and my nephrologist had warned me that I may not feel well the first month or so and she was correct. The increased urination wasn't really a big deal for me because I was already drinking over 3L of water so I was already going frequently. However, I did initially experience headaches, leg cramps, "thirst" (which I found hard to quench), disruption in sleep (due to the thirst and nocturnal urination), dry skin/mouth...I think that was it! All this lasted about a month and then it subsided. I personally have found that drinking small sips almost constantly all day long works well as well I take the drug 7AM and 3Pm which helps a bit with the getting up in the night to go the bathroom. (I only get up once now). My average water intake for the day is approx. 4L, 500mL/day. I have begun to get dull headaches again and some muscle spasms (in my neck), however, I am not sure if this is related to the drug. Since I have been on the drug my eGFR seems to be holding steady at 44 which I take as a good sign, however, my nephrologist says that it is too soon to tell if it is working and that the even if the size of the kidneys has reduced that it is really about function. Has anyone got an idea how we are suppose to know if and when the drug is actually working? Oh, one more thing...I was starting to have a bit of flank pain before Tolvaptan and I am not hardly at all now...so another positive sign I guess!! Good luck! I would love to hear about your experience with the drug once you go on it. Cheers
This is very helpful. Thank you.
My efgr is the same as yours so will be interesting to see how the drug affects me.
When you say, "constantly sipping water", what do you mean by this? Do you constantly have a bottle of water in your hand? I worry about this because I have a 4 and a half month baby to look after and I worry about how I'm going to do that when I'm going to need to be drinking all the time. I drink about 3-4 litres now so maybe I'm already drinking almost what I need to be drinking. I do at least 2 night wees a night anyway so hoping I won't do more than this.
I will keep you posted.
X
It sounds like you may already be drinking what you need.
When I first went on the drug one of the most significant unpleasant side effects that I experienced was a hard to quench "thirst". I was only drinking about 3L prior to Tolvaptan and at the beginning had only increased my water intake to 3.5L - 4L and was drinking when I felt thirsty. ie. I would drink 500ml first thing in the morning with my pill and then not drink again for approx. 60 minutes. I now carry a large 1L bottle with me and sip every 10-15 mins. (again approx.)...by doing this I no longer feel that thirst and I feel less bloated. I am only drinking about 4.5L/day now so maybe you will be fine because you are already drinking about that. I have read that some people drink 5-6L of water per day but for me I am currently finding that if I sip more frequently and drink around 4.5L per day that I feel ok. I should mention though that I am still on the lowest dose...45 and 15...so not sure if things will change if they decide to up my dosage. Good luck when starting Tolvaptan and with your wee one. Cheers
I read in another thread, Chewitt posted the link to it earlier in this thread, that some people do miss a dose occasionally when travelling. I don't know what medical impact this has but does sound like it would make those long journeys more manageable.
Did you stay on Tolvaptan after the study or did you find you had to stop due to the side effects? When you were on the drug did it not slow the progression of kidney decline at all? If you are not currently on Tolvaptan how long were you on the drug for? I have been on the drug for almost a year and although my eGFR is staying about the same at the moment my nephrologist says that it is too soon to tell the effectiveness of the drug...that even if the size of the kidneys is reduced that it really comes down to the kidney's function. So for me personally, I would really like to know if Tolvaptan is going to work at slowing the progression of my kidney decline and at what point will I have a clear answer that yes this drug is working. It is very frustrating taking a drug with so many side effects but not really knowing if it is actually going to benefit me by slowing the progression of PKD and the ultimate end game of kidney failure.
Just a quick update, I have started Tolvaptan this week. I am on the lowest dose to start, which is 45mg in the morning and 15mg in the afternoon/evening. My egfr is 44.
I was expecting the first two days to be really bad but actually it has been ok!
I was drinking about 3 litres of water a day before starting and now I am up to 4 (plus tea and other water/drinks I might drink throughout the day). I have bought myself a couple of litre flasks and that’s how I measure the majority of what I’m drinking.
I’m taking the first tablet at 7.30am and I will have a big drink as I take it, about 250ml to 500ml. I then take the 2nd tablet at 4pm.
I need the toilet more but I’m not desperate, I still have control over it. When I go to bed I take a litre with me and I am finding I’m drinking this through the night, which does mean I’m getting up quite a bit to go to the loo but I am used to this as I was probably going twice in the night before I started.
I go to sleep about 10.30pm and then wake about 12.00am and then again at 3 and 6 to go to the toilet and I’m having a drink after every toilet stop. This is ok for me at the moment as im kind of used to it but am also getting up with my baby girl. I’m finding the water tastes really good and feels refreshing.
I’ve not experienced any other side affects so far and am feeling much more positive about everything now. Interested to see how the side affects progress as the dose increases.