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PKD Charity for Autosomal Dominant PKD

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Drop in kidney function

tillymint16 profile image


I have PKD and I’m 60

I was diagnosed at 16 but in general great healthy though I have brain aneurysms aswell

Today I have got my recent blood results and to my dismay and panic my kidney function has dropped from 59 to 46!!

I’m utterly terrified and fear I may be put on Tolvaptan

Any comments of other people experience on this medication or advice would be very much appreciated. I understand there is huge quantities of consumption of water involved!!

Thanks Andrea Beesley

7 Replies

Hi, Firstly don't panic. If you have to start taking Tolvaptan I can tell you that in my own experience the side effects have been minimal.

Of course it can effect people differently but I have only experienced weight loss, slight dizziness (when standing up too quickly ) and thirst.

Yes you do have to keep up water intake.

But I still work full time ,exercise daily and do mostly what I like.

Having said that I have stopped drinking alcohol but I feel better for it.

tillymint16 profile image
tillymint16 in reply to Spaceace

Thanks Spacace for your reply

Ive heard a few horror stories but as usual side affects if and, are different for everyone.

I’m hoping the recent result is a ‘one off’ especially as I had recently suffered an upset stomach prior to blood test.. perhaps it had upset things!

No doubt there will be another blood test to see if there’s a trend and hopefully my hard work of drinking a lot between now and then will sort it out.

I’m glad it works well for you and it’s a good idea to give up the drink I guess



Don't panic Andrea GFR is estimated and not always accurate and you need 2 or 3 readings to see a trend. I also have PKD but well past that point and now on hemo dialysis. Tolvaptan was not around back then for me but I think knowing what I know now I probably would have seriously considered anything that would prolong my time before dialysis. Exercise and diet are your best friends.

Best wishes, Mark.

tillymint16 profile image
tillymint16 in reply to Aus01

Hi Mark

Many thanks for your reply. I’m expecting the dreaded blood test or two!! again in a few weeks but know it’s got to be resolved whether it’s a trend or a one off. Was diagnosed when I was 16 so well on it with diet and always keep fit.

Think that’s why I was so shocked at the result as feel fit as a fiddle no pain or any complaints!!! Always take my BP meds.

I will of course take Tolvaptan if required and agree it’s unfortunate it wasn’t around to help you.. but know these treatments are getting more successful as the years progress

Anyway best regards


Hi I’ve been on tolvaptan for just over a year and feel so much better. My kidney function was at 42. I have no pain at present since being put on this med.It is a little hard to get use to the water consumption,but it’s just a way of life now. Better than having all that discomfort.

Thanks for your reply.

My consultant called yesterday and was quite shocked at the sudden drop in GFR. It went from 59-46 but I have no discomfort, pain, no water infections and everything else in the blood is normal ie potassium sodium levels.

He thought it could be a one off.. another blood test on Thursday and hopefully it’s come back up otherwise it could be Tolvaptan for me also.

I was just concerned as I also have liver cysts and I heard the meds came damage the liver.. but I guess regular blood tests would show this.

Ahh well it is what it is I guess.. at least they have developed this medicine now.

Glad you doing great on yours👏🏻

Regards Andrea

I have diagnosed with PKD since 29 years, all went well but suddenly in 2018 when I was at 47 years the GFR observed 55, then declined to 46 in 12 months However no pain but I can feel that the kidney sizes are growing and through CT scan report.

Last one year it's looks steady at 44 to 45.

My next appointment is not October 13 and I have not done the blood test last 7 months due to my outdoor assignment.

There can be decline basically what have understood from other PKD patients from the group that they too has the same issues.

We need to be strong and accept it and look into what may have caused the kidney deline.

In my case, I feel awareness was less about the PKD and the water intake was less and food eating was too much with smoking and excess drinks ... Although I am not drinking too much but even 60 ML or more is excess for PKD also although I am not a chain smoker but used to do it for fun and less water off course without understanding the reverse effects, also my nature of Job did not support me because of food not homemade.

Kindly request to remain strong.

I am on Tolvaptan for more than 10 years however with 15 mg a day on initial dose and last year the dose has been slowly increased to 60 mg a day n now 90 mg a day.

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