Tolvaptan and PLD

[tillymint16]

Hi

My nephrologist is consider starting me on Tolvaptan.

Has anyone heard of the the medication damaging the liver as I also have PLD as a lot of PKD patients sometimes have.

Dont really want to start on this as my GFR is 52... I’m working hard on getting it higher in 2020.

Many Thanks

Andrea Beesley

[MillBern]

Hi

I also have PKD and PLD and my nephrologist and I discussed using Tolvaptan over the course of several appointments.

In the end we decided that as my kidney function is stable (GFR 42) and I am keeping well with no pain or other symptoms I should be monitored over the next few years. This is mainly because you have to take the medication for 4 years to get 1 year delay of the need for dialysis.

When weighing up the benefits against the side effects, he told me I would probably be using the toilet every 45 minutes day and night and disturbed sleep etc. He said it’s quite a difficult drug to take. I know it affects people differently and lots of people are benefiting greatly from it, but I think my condition is progressing slowly and he feels my quality of life would be affected without much benefit.

As far as liver damage is concerned, you would be regularly checked so don’t worry.

Keep well and I hope Tolvaptan is successful for you.

Best wishes

Jude

[tillymint16 in reply to MillBern]

Thanks Jude for replying and good wishes. I’m pretty much in the same place as you.

He relented in the end as I don’t really want to go on it because of those side effects.

My GFR has dropped but I’m very well otherwise fit and healthy apart from brain aneurysms!!! Which are also monitored.. we agreed that I should drink 3-4 Lts of water a day to increase GFR and see how I go.

I was also told a while ago that although I had PKD from Mum that I had genetic modifiers that slowed the disease down.. I’ll hit the fluids big time and fingers crossed the readings have changed by next appointment in April.

All the best for a healthy 2020🎉

Andrea xx

[1lou]

I've been on tolvatpan for 22 months, i also have pld, the only side effects really is the need to urinate regularly. It can cause liver enzyme to rise in few patients. A friend of mine as come off the drugs for this reason but she also works out at the gym and this contributed to the enzymes to rise. The drugs are working for me personally I'm on the high dose 90/30 and i drink around 9 litres daily. For me personally i had to try the drug as im not eligible for transplant. Xx

[tillymint16 in reply to 1lou]

Thanks 1lou

I thought you had to be way down the line of he kidneys not functioning very well at all and a low GFR for them to resort to Tolvaptan. What is your GFR?

[1lou in reply to tillymint16]

I can't remember love, im not back until February now, as far as I'm aware tolvatpan are governed by nhs england ( for uk of course) and kidney function needs to be below 80% to be eligible for jinarc. I also have cerebal aneurysms from pkd and previous brain hemorrhage xx

[tillymint16 in reply to 1lou]

I just seem to have been given conflicting advice from my nephrologist. I too have brain aneurysms 5 to be exact. One coiled last year others monitored. My appointment for MRI result is 9th Jan as developed Pulsatile tinnitus but got 2 aneurysms on the right side carotid artery.. so wondering if that’s the next ‘job!’

I know how you feel having these 2 issues with PKD.... horrible though it is it’s a comfort to speak to yourself and others who have the same problem and the worry that we have to live with.

Anyway... have a good and healthy New Year🎉

[PaigeyPaigeForLife in reply to tillymint16]

You can also get a second opinion. I just started taking Jynarque 45/15 lots of going to the loo nut so far my labs are looking good. I really hope you find a solution that work for you.

[tillymint16 in reply to PaigeyPaigeForLife]

Aww thanks🙏

Think I may do that as I had a different consultant last appointment ... conflicting views.. glad your results are on the up I guess that’s the main thing really I can put up with the loo visits😌

Stay well and Happy 2020🎉

[Susan_101 Moderator PKD Charity for Autosomal]

Hello Andrea

You may find a previously recorded webinar hosted by the PKD charity UK useful Dr Grahame Wood, Consultant Renal Physician, Salford Royal Hospital discusses Tolvaptan youtu.be/5eFWtqvJQko(Not working as expected?)

This link also to the charitys website may help you also pkdcharity.org.uk/about-adp...

If you decide to go ahead with Tolvaptan you will be well monitored, in the UK bloods are taken monthly for the initial 18 months to ensure all is well. For those who do develop higher liver readings these return to normal very quickly when Tolvaptan is stopped/does reduced.

Best wishes

Susan

[Susan_101 Moderator PKD Charity for Autosomal in reply to Susan_101]

Tolvaptan is most beneficial to start while eGFR is high. The aim is to slow the progression for as long as possible.

[tillymint16 in reply to Susan_101]

Thanks Susan will take a look at these links👍🏻

[PaigeyPaigeForLife]

I have, I just started you can check out my post, and remember meds affect us all differently.