First Box Down: Today is i complete my... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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First Box Down

PaigeyPaigeForLife profile image

Today is i complete my first box of Jynarque, my last blood work and urine came back excellent! My Nephrologist is pleased and so am I.

I should receive my second set today to be able to continue in a timely manner.

18 Replies

That really is great news and you must be feeling great and very positive👍🏻👍🏻👍🏻Xx


It really is, but with me hardly sleeping and bathroom visits my depression and anxiety has kicked in, so I see my pcp today.

Susan_101 profile image

Thanks good to hear!


All the best and hopefully the loo runs settle down as you go. All the best for a ‘comfortable’ 2020!



All the best to you in 2020 as well 🎊💐🎊

Many Thanks 👏🏻👏🏻

Fingers crossed no more brain surgery... I don’t want to be there and they defo don’t want me.. I’m a nightmare with daily blood tests. Ahhhh!🤣😳xx

At what stage regarding gfr did they recommend this medicine. Thanks

Susan_101 profile image
Susan_101Moderator in reply to Samiya20

Hello Samiya20. The UK criteria can be found on the PKD Charity website as can further reading about Tolvaptan

Samiya20 profile image
Samiya20 in reply to Susan_101

Thank you

That is something to discuss with your Nephrologist, I am early stage 3a 45-59: Mild to moderate reduction. Talk with your Nephrologist for more information.

I will be 49 years in June, I am also early 3a 45-59.

After a six month monlthy blood check, it's still at 48 to 52.

I am on Tolvaptan 60 mg in the morning & 30 mg after 8 hours.

Presently water intake 5.5 to 6 litres a day

My weight was 76 kgs before a 2 years back but to diet I am now 65 kgs.

I eat mostly fruits such as apples, pears,all types of berries, no salt biscuits... Lime water, beat Roots, carrots, white eggs, coffee & rice water

Kindly advise any additional & quantity pls.


My Jynarque dose is 45mg morning and 15mg eight hours after, my water intake is 3liters a day. My diet low salt, like you I eat lots of fruits and vegetables. There are some fruits I can have much of, apples, bananas, avocados even oranges sometimes they all make me nauseous🤢

I would suggest you talk to nutritionist god more information.

That’s great news paigey. Do you think it’s worth taking it so far?

So far so good, I've had two sets of labs and I will be having another one next week plus an appointment with my Nephrologist so I will know if there are any changes. I will also share.

Good, many thanks for sharing and best of luck!

You are welcome Rick, how have you been?

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