Tolvaptan

[Seur]

Hi everyone. Recently been diagnosed with ADPKD. Just wondering if Tolvaptan is provided by the NHS.

Thank you.

[Mgt8]

Yes it is!I believe you need to be assessed to be prescribed it. Here is a link that I found useful.

Mgt

nhs.uk/conditions/autosomal...

[Seur in reply to Mgt8]

Thank you for the link.

[YasmeenK]

Yes, Tolvaptan is prescribed by your renal consultant and is only dispensed by the hospital pharmacy. They'll check whether you are eligible depending on your gfr readings.

You'll initially have blood tests once a month as it can have adverse effects on ones liver. My sister cannot take it. Your water intake must increase from 3litres to 4-7litres a day as it's an extremely strong diuretic.

You will wee alot.

You'll have to work out times to take your tablets

Twice a day... strong and weak dose.

I'd advise logging how much you drink and consciously increase your water intake before you get placed on the meds to allow your bladder to adjust beforehand.

It will make it easier for you.

I hope this helps.

[Seur]

Thank you , YasmeenK. The nephrologist said my kidney function is at 37%. Based on what I've been reading, this is my eGFR rate, which puts me at Stage 3, I believe.

I have seen posts with a lot higher eGFR rates so am slightly concerned about the 37%, tbh.

[YasmeenK in reply to Seur]

Ask to be placed on Tolvaptan. It helps halt the function from further deterioration.

Make sure your water intake is increased.

Make slight changes to your diet too.

I hope you fair well on it.

Blessed be

[Susan_101 Moderator PKD Charity for Autosomal]

Hello, Yes Tolvaptan is funded via the NHS for those who met the NICE criteria. PKD Charity has many useful resources pkdcharity.org.uk/They have published a recent Q&A relating to Tolvaptan it can be found at youtu.be/eYqkYVjvrfI(Not working as expected?)

[Elnubawi]

Hi Seur,I just need to add that your gfr will increase and decrease for the first six months; the dose start with 30mg in the morning and 15 mg for the weak dose and there is at least 8 hours before you take the weak dose, and then the dose will increase to 45 and 60 mg until you reach the maximum dose 90 &30 mg; however at one stage your clinician might advise you to stop for a while as Tolvaptan increases the liver function before you restart it again and you will have monthly blood tests for the first 18 months.

I hope this helps

KR