One Year on Jynarque (Tolvaptan)! Living with PKD Part 2

[@mohammadarbaz9831]

Living with PKD. Inherited from my mum! She’s no more, and died due to PkD. Taking blood pressure medicine everyday. I hope for the best.

[@JiaYWu]

Stay strong, J! Thank you for sharing your experience. I am sure it helps many others!

[@alonzosanchez9520]

Keep positive, you are still very young and can make it man. Hang in there. There are studies for possible cures. I have this in my family and I am being checked for this but I am 50yrs old so I have to just really take care of my diabetes and high blood pressure. Also have heard that intermittent fasting is very good to keep this from progressing so try that my friend. God bless

[@2alexkom]

Hello what is your GFR ,thank for answer.

[@gene108]

Thank you for making these videos and sharing. On the question about when people develop PKD, PKD is an inherited condition where one parent has it (In autosomal dominant PKD) and passed the PKD gene onto a child. The kidneys will have PKD from birth. Symptoms that can cause someone to see a doctor for a diagnosis usually do not develop until a person is in their 30’s or 40’s. People w/ a family history often get checked earlier, as a precaution. I was on a couple of clinical trials for Tolvaptan. I found the thirst to be a bigger issue than the urination. I also had an office job, so getting water and going to the bathroom was not a challenge. I visited my brother while on the drug, and we spent several hours out. That was the first time I was away from a source of water for an extended period, and found that the hardest to handle. On future trips, I was conscious to always carry water.

[@king491]

hey gene! I see a lot of similarities with our journeys. thanks for sharing the insightful info as well! I remember when i first started the thirst for me was almost unbearable. i did stop and start jynarque for a while and for some reason the thirst is minimal for me. but def understand how troublesome it can be, especially if you’re out and about. how has it been so far? are you still on jynarque?

[@cuicui-goldman2809]

Thank you sharing your experience. That is very helpful!

[@kristenwalsh3801]

Thank you for posting your experiences. I have PKD and am starting my journey with Jinarc today.

[@gabrielfuentes3943]

Hello! My doctor has been pushing this medication. My renal function is normal so far. How has your Jynarque journey been?

[@sandymckinnon8164]

My husband finally passed away from the pancreatic cancer in 2007. When kidneys quit so does red blood cell production. You need weekly injections of erythropoietin to create red blood cells. That might have caused the pancreatic cancer.

[@julias9553]

Hii J! Thank you so much for these videos about Tolvaptan!! It's beeing very helpfull! I also have PKD and i'm gonna star taking the pills in January. You said you didn't have to make hard lifestyle changes with alcohol and so on, it was kind of worring me a little...😂 But I also have a helthy lifestyle, just as same as you do, so i think it's gonna be ok. As soon as I start taking the medicine, I'll also share my experience! Thanks again, hugs from Brasil 🙏🏻🇧🇷

[@king491]

Hi Julia!! Appreciate the comment! I think I will jump back on Jynarque in January as well too! I'm glad to hear you're staying healthy! It's the best thing you can do while being on Jynarque. Praying for you and your Jynarque journey!

[@lovelyworld8692]

@@king491 Hi I start to take this medicine THIS morning I feel so so bad dizzy can't walk well very weak, so could you please is that normal, I can't continue take this medicine, I feel it will kill me slowly

[@nabinatamang3888]

Hi Julia...I am a pkd patient as well...i have been prescribed to take tolvaptan... how was your experience? Can you please share

[@sandymckinnon8164]

My late husband was diagnosed with PKD in his 40s. It seemed controlled by BP meds till 68 or 69. Creatine really started increasing at 70. I was perfect kidney donor. He needed dialysis before they could schedule transplant. Dialysis, then some pre-translant surgery caused stroke. After he recovered from stroke transplant was scheduled. Then pancreatic cancer reared its ugly head. If this will keep you from dialysis I would walk on crushed glass to get it.

[@lovelyworld8692]

Thanks, but what happen with your liver , did you check your liver function know ? Dr advice me to take this medicine but I think after this video I will not take it , I ask him about my liver function , I don't want to damage both kidney and liver ,

[@amor0000]

My nephrologist said the benefits of the medication don’t outweigh the risk. I’m advised to drink 3 liters of water/fluids a day but I can’t do that because it’s too painful and uncomfortable. My kidneys and liver are so big I look 9 months pregnant. I have constant back pain and pains in my abdomen and ribs. I’m advised to avoid caffeine.

[@SiDung-qg7rn]

Sorry you’re having so much pain from PKD. What about needle aspiration of the cysts to drain the fluid. This procedure has helped in managing pain.

[@amor0000]

@@SiDung-qg7rn the pain in my ribs and abdomen have subsided. I guess because my organs have grown even more and things have moved around. I’m not sure. I still have a lot of back pain though and a nephrologist told me the only thing that could be done is surgery on the nerves. My husband would never allow me to do that. He wouldn’t want to pay for it. But thanks for the idea. I appreciate that!

[@SiDung-qg7rn]

@@amor0000 glad you’re having less abdominal pain. Do look into the possibility of draining the cysts as it’s minimally invasive. In addition to pain management, some research have even stated it can prolong kidney function (by reducing the pressure of functioning parts of the kidneys). Even if it’s not a cure or permanent solution as the cysts can come back; however, the quality of life typically improves over the course of years and one can choose to have the procedure done again if necessary. Good luck 👍

[@amor0000]

@@SiDung-qg7rn thank you! 🙏🏼

[@hodhodsalah2541]

Pkd ....too Kidney warrier Go ahead Keep eating healthy Do your fitness Hard working And go on

[@thecandymeneseschannel]

Hi! Yes, you are still young. How bad was your pckd?

[@claudiebea]

Hey, thanks for another great video! Just wondering how often you skipped doses/how often you think is acceptable to skip? Thanks 😊

[@lovelyworld8692]

Hi I take this medicine unfortunately I feel very bad, I can't continue, I take it for two days ,

[@chawklit_sawce]

Hi, thanks for sharing your experience. I'm also in my mid 20's, just took my first dose today, along with blood pressure medication my nephrologist prescribed to me. I'm taking the low 45-15mg dose, and am already noticing how much this medication is making me pee 😂 Interesting hearing your experience with working out and your liver, I was pretty good with working out and eating healthy during my college years, but since the pandemic hit I haven't been as active unfortunately. Also appreciate hearing that you didn't really have to change your alcohol lifestyle, although I'm not much of a drinker, I did go through a period where I was smoking weed everyday for over a year. I'm taking a break now and going to cut back, strictly social, and maybe on weekends (I'm still debating). Hope to be hearing more from you in the future! I hope you don't mind me asking, what was your GFR when you were diagnosed? Feel free to PM me if you don't want to let the public know.

[@2alexkom]

Hi,what is Your GFR? Thanks

[@chawklit_sawce]

@@2alexkom Hi, last time I checked with my nephrologist a couple weeks ago was 82%.

[@2alexkom]

@@chawklit_sawce thanks,82 is good,how old are You?

[@chawklit_sawce]

@@2alexkom I'm 25

[@danaweeks440]

Hello. There is a lower dose available - 45mg/15mg. Maybe not as many side effects for you? I have been on that dose for 2 years now.

[@lovelyworld8692]

Hi I start to take this medicine THIS morning I feel so so bad dizzy can't walk well very weak, so could you please is that normal, I can't continue take this medicine, I feel it will kill me slowly

[@2alexkom]

Hello what is your GFR. Thanks for answer

[@Pawelpl88]

In my country cost therapy 5000$ per month. Isn't support by national healthcare :/

[@DungTran-ew9pl]

Sorry, where are you?

[@Pawelpl88]

@@DungTran-ew9pl Poland

[@eugeniahobbs41]

It’s Jinarc or dialysis