I'ᗰ Oᑎ ᒍYᑎᗩᖇᑫᑌE 👏🏽👏🏽👏🏽👏🏽 - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD
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I'ᗰ Oᑎ ᒍYᑎᗩᖇᑫᑌE 👏🏽👏🏽👏🏽👏🏽

PaigeyPaigeForLife
PaigeyPaigeForLife

ITᔕ ᗷEEᑎ ᗩ ᗯᕼIᒪE ᔕIᑎᑕE I'ᐯE ᑭOᔕTEᗪ ᗩᑎYTᕼIᑎG, I ᕼᗩᐯE ᗷEEᑎ ᗪEᗩᒪIᑎG ᗯITᕼ ᗪEᑭᖇEᔕᔕIOᑎ ᗩᑎᗪ ᗩᑎ᙭IETY ᗯITᕼOᑌT ᗰEᗪIᑕᗩTIOᑎ, ᖴEEᒪIᑎG ᗷETTEᖇ ᑎOᗯ ᗷᑌT ITᔕ ᔕTIᒪᒪ ᗩ ᔕTᖇᑌGGᒪE.

I ᗰEᑎTIOᑎEᗪ ᗷEIᑎG ᑭᖇOᑭᑭEᗪ ᖴOᖇ ᒍYᑎᗩᖇᑫᑌE, I ᑫᑌᗩᒪIᖴIEᗪ ᗩᑎᗪ Oᑎ ᗪEᑕEᗰᗷEᖇ 3ᖇᗪ I ᔕTᗩᖇTEᗪ TᗩKIᑎG TᕼE ᗰEᗪᔕ, TOᗰOᖇᖇOᗯ TᑌEᔕᗪᗩY ᗯIᒪᒪ ᗷE ᖴOᑌᖇ ᗯEEKᔕ ᗩᑎᗪ I ᖴEEᒪ GᖇEᗩT! I ᕼᗩᗪ Oᑎ 12/16/2019 TᕼE ᖇEᔕᑌᒪTᔕ ᔕᕼOᗯEᗪ ᗰY ᒪIᐯEᖇ ᒪOOKEᗪ GOOᗪ ᗰY ᔕOᗪIᑌᗰ ᗯᗩᔕ ᑌᑭ ᗩᑎᗪ ᗰY KIᗪᑎEY ᖴᑌᑎᑕTIOᑎ ᔕᒪIGᕼTᒪY ᗷETTEᖇ.

ᗷEᑕᗩᑌᔕE Oᖴ TᕼE ᔕOᗪIᑌᗰ ᗷEIᑎG ᑌᑭ I ᕼᗩᗪ TO ᕼᗩᐯE ᗷᒪOOᗪ ᗯOᖇK ᗪOᑎE TOᗪᗩY 12/23/19 ᕼOᑭEᖴᑌᒪᒪY I GET TᕼE ᖇEᔕᑌᒪTᔕ TOᗰOᖇᖇOᗯ Oᖇ ᗩᖴTEᖇ ᑕᕼᖇIᔕTᗰᗩᔕ.

ᗰY ᑎEᑭᕼᖇOᒪOGIᔕT ᗯᗩᑎTᔕ ᗰE TO ᗪᖇIᑎK 3 ᒪITEᖇᔕ Oᑕ ᗯᗩTEᖇ ᗩ ᗪᗩY ᗰOᔕT ᗪᗩYᔕ I ᗰᗩᑎᗩGE TO ᗪᖇIᑎK 11 16.9ᖴᒪ. Oᘔ ᔕOᗰE ᗪᗩYᔕ ᒪEᔕᔕ Oᖴ ᗰOᖇE IT ᗪEᑭEᑎᗪᔕ Oᑎ ᗯᕼᗩT I ᕼᗩᐯE GOIᑎG Oᑎ. TᕼIᔕ ᗰEᗪIᑕᗩTIOᑎ Iᔕ ᐯEᖇY E᙭ᑭEᑎᔕIᐯE ᗩᑎᗪ I ᗩᗰ TᕼᗩᑎKᖴᑌᒪ TᕼᗩT ᗰY IᑎᔕᑌᖇᗩᑎᑕE Iᔕ ᑕOᐯEᖇIᑎG IT ᗰᗩKIᑎG ᗰY ᑕO-ᑭᗩY ᗩᖴᖴOᖇᗪᗩᗷᒪE ᖴOᖇ ᗰE...

I KᑎOᗯ TᕼᗩT ᗪEᗩᒪIᑎG ᗯITᕼ TᕼIᔕ ᗪIᔕEᗩᔕE I ᐯEᖇY ᗪIᖴᖴIᑕᑌᒪT TO ᗪEᗩᒪ ᗯITᕼ, I ᑕᗩᑎ'T ᗯᗩIT ᖴOᖇ TᕼE ᗪᗩY ᗯᕼEᑎ TᕼIᔕ ᗰEᗪIᑕᗩTIOᑎ Iᔕ ᗩᐯᗩIᒪᗩᗷᒪE TO EᐯEᖇYOᑎE.

14 Replies
oldestnewest

Hi Paigey,

Many thanks for sharing. I’m happy to know that you’re happy with the medication, please keep posting. It’s great help for everyone. I wish more people on it shared their experiences! It would be very helpful especially with such a new medicine, we never know how patients really feel.

I advise you to find help with this depression and anxiety, it won’t go away for itself and around 70% of adpkd patients are said to deal with depression. There are good meds for this nowadays!

Best of luck!

TᕼᗩᑎKᔕ ᖇIᑕK, I ᗯIᒪᒪ. ᗯE ᖇEᗩᒪᒪY ᑎEEᗪ TO ᔕᕼᗩᖇE, I KᑎOᗯ IT ᗪOEᔕ ᗩᑎᗪ OTᕼEᖇᔕ ᖇEᗩᒪᒪY ᑎEEᗪ TO KᑎOᗯ ᗩᗷOᑌT ᑎEᗯ ᗰEᗪᔕ TᕼᗩT ᑕᗩᑎ ᗰᗩKE ᗩ ᗪIᖴᖴEᖇEᑎᑕE Iᑎ ᔕOᗰEOᑎE'ᔕ ᒪIᖴE.

I ᗩᗰ Oᑎ ᗯEEK ᖴOᑌᖇ Oᖴ ᒍYᑎᗩᖇᑫᑌE ᗩᑎᗪ I ᖴEEᒪ GᖇEᗩT, I ᗩᒪᔕO ᕼᗩᗪ TᗯO IᑎTEᖇᐯEᑎTIOᑎ ᖇᗩᗪIOᒪOGY/ ᗪᖇᗩIᑎIᑎG Oᑕ ᑕYᔕTᔕ Oᑎ ᗪOᑎE Oᑎ ᗷOTᕼ KIᗪᑎEYᔕ ᗯᕼIᑕᕼ ᖇEᗩᒪᒪY ᕼEᒪᑭEᗪ ᒪEᔕᔕEᑎ TᕼE ᑭᗩIᑎ.

ᕼOᗯ ᕼᗩᐯE YOᑌ ᗷEEᑎ ᗪOIᑎG?

Hi Paigey!

Many thanks for your reply.

I’m fine, some days better than others, but much better than a few months ago.

Best of luck with the med!!!

Hi Paigey,

What is the dosage of jynarque you are taking? I was recommended a minimal dose and I need to get the blood work done before going on a higher dose. But for now I get the blood work done every month and its been 6 months since I am on this

-kenchappa

ᗰY ᗪOᔕᗩGE Iᔕ 45ᗰG/ 15ᗰG

How much water are you able to drink? My dosage is 15mg and I drink abount 2-2.5 ltrs of water. My nephrologist suggests to drink about 4-5 ltrs and I am unable to drink that quantity

Rick234
Rick234
in reply to Kenchappa

Hi Kenchappa,

Have you tried drinking 400-500 ml per hour? Just swallow it and keep going you can do it!

Wmspl
Wmspl
in reply to Kenchappa

15 mg dose is usually given by a nephrologist in India for years and then increased slowly.

Drink more water please

I have been taking jinnarc for 22 month im on the high dose 90/30 i drink around 9-12 litres a day, the meds are working for me personally. I also suffer depression and anxiety under medication for this xx

ᔕOᖇᖇY TO ᕼEᗩᖇ ᗩᗷOᑌT YOᑌᖇ ᗪEᑭᖇEᔕᔕIOᑎ ᗩᑎᗪ ᗩᑎ᙭IETY, I TOO ᔕᑌᖴᖴEᖇ ᗯITᕼ ᗷOTᕼ ᗷᑌT ᑎOT ᖴᖇOᗰ ᗰEᗪᔕ. I TᗩKE 45/15 ᗪOᔕᗩGE Oᖴ ᒍYᑎᗩᖇᑫᑌE, ᔕO ᖴᗩᖇ ᔕO GOOᗪ. ᗰY ᑎEᑭᕼᖇOᒪOGIᔕT ᗯᗩᑎTᔕ ᗰE TO ᗪᖇIᑎK 3 ᒪITEᖇᔕ ᗩ ᗪᗩY, I ᔕTᖇᑌGGᒪE ᗷᑌT I TᖇY.

I was on 15mg dose for 8 years,now recently I am on 15/15 mg, after one month on 45/15mg & now on 60/30 mg.

U need to drink min of 4.5ltrs daily upto 5.5ltrs daily if possible.

Yes AKPKD patient should understand each ones feeling, all that we can do is encourage & pass on the best info.

Food again with less salt...

I am suppose to drink 3 liters a day, its a lot but I try and thankful I don't work, many trips to the 🚽 but I keep on pushing...

Hi PaigeyPageForLife,

Good to hear that you are tying to stay up, Like you I dropped the meds for depression. I am getting out more often now and my swelling has gone down. I need to drink more water too. I seem to be always feeling like I'm overheating so keeping the fluids up is the way forward. No talk from the doctors here yet of the new meds your for me yet. But I still suffer with the depression, I think its due to the tiredness. I slept for 5 hours the other day. We have heatwaves here so its hard to sleep at night. I feel warm in winter with APKD let alone summer.

Cheers

Trish

Good for you Trish! I am really struggling with my depression and anxiety, i am researching to see if there are other ways to deal with it, its kicking my butt.

I hope you get the overheating under control. I am in menopause as well so trouble sleeping.