First Box Down

[PaigeyPaigeForLife]

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.

[tillymint16]

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

Andrea

[PaigeyPaigeForLife in reply to tillymint16]

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 Moderator PKD Charity for Autosomal]

Thanks good to hear!

[PaigeyPaigeForLife in reply to Susan_101]

👍🏽

[tillymint16 in reply to PaigeyPaigeForLife]

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

Ax

[PaigeyPaigeForLife in reply to tillymint16]

Hoping🙏🏽

[PaigeyPaigeForLife in reply to tillymint16]

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

[tillymint16 in reply to PaigeyPaigeForLife]

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

[Samiya20]

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

[Susan_101 Moderator PKD Charity for Autosomal in reply to Samiya20]

Hello Samiya20. The UK criteria can be found on the PKD Charity website as can further reading about Tolvaptan pkdcharity.org.uk/about-adp...

[Samiya20 in reply to Susan_101]

Thank you

[PaigeyPaigeForLife in reply to Samiya20]

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.

[Wmspl in reply to PaigeyPaigeForLife]

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.

Thanks

[PaigeyPaigeForLife in reply to Wmspl]

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.

[Rick234]

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

[PaigeyPaigeForLife in reply to Rick234]

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.

[Rick234 in reply to PaigeyPaigeForLife]

Good, many thanks for sharing and best of luck!

[PaigeyPaigeForLife in reply to Rick234]

You are welcome Rick, how have you been?