Toplahan

[Polyanthem]

Is anyone on toplaphan. I have been advised to have this and I have concerns on its side effects. Can anyone help.

[Hidden]

My brother is on it having been on the trial from day one. When you first start you go to the loo a lot at all hours but this does settle after a few months he said. You do have to drink a lot of fluid. He thinks this is worth it by miles. Its kept him working for years past is predicted need to stop working and off dialysis however it doesnt do much for the usual pkd fatigue and your liver must be ok. If I had the option id take it in a flash. Grab the opportunity is my opinio but of course the choice is yours.

[Mgt8]

Hi

Sorry to hear about your side effects. I didn't take Toplovan either but my daughter has pkd and I kind of see it as a lifeline for her when she gets to stage 3.

I too would have jumped at the chance, had it been available to me. Anything that stops progress of this horrid condition has got to be worth a try.

Perhaps your consultant or go can help you to address the side effects you are experiencing.

Best of luck

Margaret

[sibart]

You will be very closely monitored for any adverse effects from Tolvaptan. Any hint of anything serious and they will withdraw the meds.

The thing you will have to get used to is the extra fluid intake and peeing.

To me it’s a small sacrifice to make to keep me away from dialysis for a few extra years.

[Polyanthem]

I’ve started tolvaptan 2months ago . I had quiet strange pains at first . I have to drink large quantities of water (10lits)

.I did find this quiet difficult at first and the getting up at night. I feel so much better . I didn’t realise how ill I was feeling before taking tolvaptan.

[1lou]

I've been on tolvatpan for 20 months now, and although I found it a little hard in the beginning, it's like second nature now. There has been a massive reduction in the growth of cysts nd been told they are working well for me. I usually drink 9-12 litres a day. X

[v4seem]

Yes I am on Tolvaptan, yes I have to drink more and yes I have to visit the toilet a lot more but definitely worth it for extra years without dialysis and/or a transplant. You just have to plan so for example going on a long journey to ensure you make stops/have access to a toilet etc. Hope it helps and all the very best.

[Kenchappa]

Hi, I am on tolvaptan, the initial phase begins with regular monitoring for any damages to liver. However I am on a small dosage for now. The side effects are drinking lots of water and going to the loo often.

[PaigeyPaigeForLife]

I signed the paper work for Jynarque, waiting cor me to feel better so I can have the blood work for the liver test to be done. I am stage 3 of PKD.

[Susan_101 Moderator PKD Charity for Autosomal]

Tolvaptan also know as Jynarque is well monitored. In the UK anyone who starts this drug will have monthly clinic appointments to have bloods drawn for the first 18 months. This is to check for any adverse effect on the liver - which I must state is rare and also the liver returns to normal when stopped or dose lowered. The UK based PKD Charity has a small section on its website pkdcharity.org.uk/about-adp...