Thank you for posting this. I am in the process of getting approved to be able to start this drug. PKD is a shit disease & I've been suffering from so much pain for the last 16 years. I'm praying that this drug will help me to put off dialysis for a few years. Thank you & I pray for God's healing & blessings over your life!
Kind of you to make this video. My loved one has been taking Jynarque and does all the tests. After 6 months, there have been headaches, nausea, and other side effects (besides frequent urination). Glad it has been working for you.
hey Jesse, I just saw your video and my DR just referred me to this drug as well. Can I ask what's your progress now after 5 years? Any changes? Something to look for? Negative side effects? etc? Anything that you can give an update would be much appreciated. Thanks in advance!
Hey Paulo! Thanks for watching! Although this video is 5 years old i haven’t been on jynarque the entire time. i posted a more recent video where i talk about why i had to stop (covid, lifestyle, etc.). I’ve been back on it for about a year now and my doctor has reported my kidneys have actually shrunk! he says it’s hard to believe so we’re waiting on my next mri. my kidney function is above 90% but the main issue is they’re enlarged which could lead to failure. main side effects like i mentioned are peeing ALOT lol. Def start out slow and figure out how to fit it into your lifestyle! I’ll try to make more videos of my journey!
I work for a Nephrology clinic and I’m the person who gets every PKD patient approved for this medication in our office. I also follow up with patient’s blood work. Please Please Please get your LFT monthly for the first 18 months then every 3 months. I hate being the blood work police, so get your labs done on a timely basis. I have had a patient take the 2nd dose at night to close to bedtime and was peeing all night long. Take the 1sr dose upon wakening and the 2nd dose 8 hours later.
Thank you for this video. I just got diagnosed and this is the 1st thing my doctor mentioned. It looks scarry due to the liver mostly plus the dry mouth and urinating for the rest of my life but actually hearing from someone that is on it helped me have some hope. I see this video was 1.5 yrs ago. Could you please post a message of how you are doing, feeling and progression? It will really help me as I am scarred and feeling hopeless.
Are you taking the drug? How are you doing on it? I just started taking the drug today but I have been dealing with my PKD for 30 some years. Hope you are doing well.
I'm glad you posted this. Its hard to find many channels on PKD stories. I have found a few, and stubbled upon yours. My mom has PKD, my grandfather had it, great grandmother and 2 of my uncles. Now I am praying about my own health. I will go in for an ultrasound in Nov. I hope this goes well for you.
@@jozen1986 Thanks for asking! They found multiple cyst on my right kidney and 1 cyst on my left. I was officially diagnose with stage 2 PKD. =My kidneys are at 80% function, which is really good. It seems mine is slow progressing. I have eliminated carbs and drinking tons of water and exercising more. I'm feeling good and living my life. Not letting fear take over.
Hiiii i suffer the same disease like you, i also got it from my father. I am 26 now and i am also thinking to take Tolvaptam, i would like to know how is your experience so far?. Thank you!
Its not for everyone! I luckily have a 9-5 so I am at my desk and close to a bathroom most of the time. Thats been the biggest gripe for me personally-just the amount of trips I've been taking to the bathroom. You also have to keep an eye out on your liver thru blood tests because Tolvaptam is known to cause some damage in some people. It's also a good idea to limit your alcohol intake as well as sodium which I have been trying to do! Hopefully this gives you a better idea but I'll be posting a new video soon with updates!
a known side effect is liver damage. Thats why they require you to perform periodic bloodwork. I believe the % of patients who experience that are small but in my situation the benefits are worth it as long as you stay up to date on bloodwork
Yup I believe most significant symptoms are in people a little older but I'm trying to get the jump on it! I dont experience any pain or issues because of PKD now but with the way the disease progresses, my doctor thought it was a perfect idea to start me early on the drug
I just started mine two days ago and I have to go to the restroom every 20 to 30 minutes and I stay thirsty..can’t sleep from having to drink water because I’m so thirsty and having to pee! I’m calling in the morning and find out if they can lower my dose because I can’t keep doing this! Good luck with yours! Keep your fingers crossed they can help me!
I couldn’t do it.. I was miserable..just hoping they come up with something else for us and it doesn’t react with our bodies like this! Good luck my friend.. I’m praying for us all
2 days both times the thirst was better on the 15 mg in morning and 15 mg in evening but I was still peeing every 20 to 30 mins it was horrible I couldn’t go no where and I couldn’t sleep! I couldn’t live like that with having a job and kids and my house and fur babies to take care of..
the beginning was tough as i had to get used to the constant peeing! but after ive been taking it so long, the “urge” doesn’t feel as strong but you kinda just get used to it as well. have you been on jynarque since?
Anyone that isn’t on medication for it yet that has the horrible pain from pkd .. what did y’all do to relieve pain? It’s unbearable at times but i can’t make it go away. Tylenol doesn’t help, lidocaine patches for back don’t help either 😭 the er gave me hydrocodone acetaminophen and it also didn’t help the pain. I’m miserable rn. But also pregnant so i can’t really take meds like that 😩
Good question! I answered this and some other questions in a new video I've posted. Heres the link to the video! th-cam.com/video/12Wh2824UFw/w-d-xo.html
Hey Michael! I recently posted a new video where I talk about what happens if you miss a dose! Heres the link to the video! th-cam.com/video/12Wh2824UFw/w-d-xo.html
Good question! I drank alot! Even in the beginning! I answer this question more in depth in a new video I posted! Heres the link to the video here: th-cam.com/video/12Wh2824UFw/w-d-xo.html
I couldn’t take the 45mg and 15mg .. I was miserable going without sleep from being thirsty and peeing every 20 to 30 mins so the doctor sent in a lower dose for me 15mg and 15mg well the thirst wasn’t as bad but I was still peeing every 20 to 30 mins ugh...I may try it again next week it’s just hard when I have things to do during the week and cleaning clients houses it just doesnt work for me because I can’t get anything done with drinking water and running to bathroom..so since I’ll be off next week I guess I’ll plan on staying home all week so I can live in the bathroom and at the kitchen sink.. if it’s no better in a week I’ll just have to not take it.. I’ll just be at square one again.. it just feels like I need to just accept reality that dialysis is in my future :( unless they come out with something better! Give me strength I’m gonna try this one more time!
This makes me so sad to read! 😢 i hope you were able to tolerate it after a while. I completely understand what you mean! Going to the bathroom all the time is tough, especially if you move around for your job! My father was a dialysis patient and seeing that made me want to pursue this drug as much as possible but i know it’s not for everyone. I’ll try to make more videos about tips and tricks i’ve found that helped me so it can hopefully help you on your Jynarque journey!
sexually no side effects thank goodness! i make sure to time my dose so it doesn’t interfere with my sleep. in the beginning i do think i felt fatigued but part of that is bc you need to stay hydrated even more so when you’re on jynarque so i upped my water intake and i felt fine!
They grow inside the kidney as well as on the surface, and they keep growing. I have heard that especially large or painful cysts can be drained, but only the ones on the surface. Also, if you puncture them to drain them, it increases your risk of infection.
Thank you for posting this. I am in the process of getting approved to be able to start this drug. PKD is a shit disease & I've been suffering from so much pain for the last 16 years. I'm praying that this drug will help me to put off dialysis for a few years. Thank you & I pray for God's healing & blessings over your life!
@@crystellemaranda8841 how are you doing on the drug? I started it today.
You're a legend. I'm about to start Tolvaptan (same) for my ADPKD. Good luck brother 💪
Appreciate it my man! Good luck to you as well! Will hopefully post an update video soon!
Kind of you to make this video. My loved one has been taking Jynarque and does all the tests. After 6 months, there have been headaches, nausea, and other side effects (besides frequent urination). Glad it has been working for you.
oh no! are they still on jynarque?? im lucky i’ve never had symptoms that severe
hey Jesse, I just saw your video and my DR just referred me to this drug as well. Can I ask what's your progress now after 5 years? Any changes? Something to look for? Negative side effects? etc? Anything that you can give an update would be much appreciated.
Thanks in advance!
Hey Paulo! Thanks for watching! Although this video is 5 years old i haven’t been on jynarque the entire time. i posted a more recent video where i talk about why i had to stop (covid, lifestyle, etc.). I’ve been back on it for about a year now and my doctor has reported my kidneys have actually shrunk! he says it’s hard to believe so we’re waiting on my next mri. my kidney function is above 90% but the main issue is they’re enlarged which could lead to failure. main side effects like i mentioned are peeing ALOT lol. Def start out slow and figure out how to fit it into your lifestyle! I’ll try to make more videos of my journey!
Please keep making videos I’m trying to decide if I’m going to take this drug too
Do it asap
Hey Melissa! Thanks for the feedback! I know its been a while but will try put something out soon!
I work for a Nephrology clinic and I’m the person who gets every PKD patient approved for this medication in our office. I also follow up with patient’s blood work. Please Please Please get your LFT monthly for the first 18 months then every 3 months. I hate being the blood work police, so get your labs done on a timely basis. I have had a patient take the 2nd dose at night to close to bedtime and was peeing all night long. Take the 1sr dose upon wakening and the 2nd dose 8 hours later.
Thank you for this video. I just got diagnosed and this is the 1st thing my doctor mentioned. It looks scarry due to the liver mostly plus the dry mouth and urinating for the rest of my life but actually hearing from someone that is on it helped me have some hope. I see this video was 1.5 yrs ago. Could you please post a message of how you are doing, feeling and progression? It will really help me as I am scarred and feeling hopeless.
Are you taking the drug? How are you doing on it? I just started taking the drug today but I have been dealing with my PKD for 30 some years. Hope you are doing well.
I'm glad you posted this. Its hard to find many channels on PKD stories. I have found a few, and stubbled upon yours. My mom has PKD, my grandfather had it, great grandmother and 2 of my uncles. Now I am praying about my own health. I will go in for an ultrasound in Nov. I hope this goes well for you.
god bless you
How was your ultrasound? i was diagnosed w pkd too.
@@jozen1986 Thanks for asking! They found multiple cyst on my right kidney and 1 cyst on my left. I was officially diagnose with stage 2 PKD. =My kidneys are at 80% function, which is really good. It seems mine is slow progressing. I have eliminated carbs and drinking tons of water and exercising more. I'm feeling good and living my life. Not letting fear take over.
@@mmisarvice196 Amen! God bless you!
@@lightscamerateach hi can i ask please how old are You and how much is your GFR thanks
Thank you , my Dr ask me to take this medicine, am just afraid to damage my liver ,
Thank you for posting. I’m literally about to take my first pill right now.
Hiiii i suffer the same disease like you, i also got it from my father. I am 26 now and i am also thinking to take Tolvaptam, i would like to know how is your experience so far?. Thank you!
Its not for everyone! I luckily have a 9-5 so I am at my desk and close to a bathroom most of the time. Thats been the biggest gripe for me personally-just the amount of trips I've been taking to the bathroom. You also have to keep an eye out on your liver thru blood tests because Tolvaptam is known to cause some damage in some people. It's also a good idea to limit your alcohol intake as well as sodium which I have been trying to do! Hopefully this gives you a better idea but I'll be posting a new video soon with updates!
Hi,can i ask how much is your GFR please?
Hi, my husband has PKD. His doctor recommended that medicine as well. Did you checked out about side effects off this drug?
a known side effect is liver damage. Thats why they require you to perform periodic bloodwork. I believe the % of patients who experience that are small but in my situation the benefits are worth it as long as you stay up to date on bloodwork
Isn't this kind supposed to hit 30 and 40? - Or at least signs and symptoms. So is this an accelerated case or are you getting the jump on it?
Yup I believe most significant symptoms are in people a little older but I'm trying to get the jump on it! I dont experience any pain or issues because of PKD now but with the way the disease progresses, my doctor thought it was a perfect idea to start me early on the drug
I just started mine two days ago and I have to go to the restroom every 20 to 30 minutes and I stay thirsty..can’t sleep from having to drink water because I’m so thirsty and having to pee! I’m calling in the morning and find out if they can lower my dose because I can’t keep doing this! Good luck with yours! Keep your fingers crossed they can help me!
Stick with the high dose it will get better you'll get used to it and won't have to urinate as often.
Oh man. I’m on day 2 and this is crazy. I can’t sleep because I peed like 4-5 times last night. And I go the same as you, every 20-30 minutes
I couldn’t do it.. I was miserable..just hoping they come up with something else for us and it doesn’t react with our bodies like this! Good luck my friend.. I’m praying for us all
ida mixon, how long did you last? Thanks! Something good will happen, don’t sweat it!
2 days both times the thirst was better on the 15 mg in morning and 15 mg in evening but I was still peeing every 20 to 30 mins it was horrible I couldn’t go no where and I couldn’t sleep! I couldn’t live like that with having a job and kids and my house and fur babies to take care of..
Hi...How are you now?
doing well! ive posted some more jynarque videos detailing my journey!
Hey Mate, just wondering if your APKD is infantile?
Hi can I ask what is your GFR ,thanks
i’ve been told but always forget! i’ll ask my dr the next month!
Hi ,how are You ,how much is your GFR ?
How are you feeling since you started taking this treatment?
the beginning was tough as i had to get used to the constant peeing! but after ive been taking it so long, the “urge” doesn’t feel as strong but you kinda just get used to it as well. have you been on jynarque since?
Can we get a one year update video? Please
Yes! I've posted a new update video! Here's the link: th-cam.com/video/12Wh2824UFw/w-d-xo.html
How old are you,and what is your GFR?
Anyone that isn’t on medication for it yet that has the horrible pain from pkd .. what did y’all do to relieve pain? It’s unbearable at times but i can’t make it go away. Tylenol doesn’t help, lidocaine patches for back don’t help either 😭 the er gave me hydrocodone acetaminophen and it also didn’t help the pain. I’m miserable rn. But also pregnant so i can’t really take meds like that 😩
Infrared heating pad or just a heating pad
Are you still on it ?
yes! i’ve posted more videos since!
Is this drug is really helpful for pkd patients?
Good question! I answered this and some other questions in a new video I've posted. Heres the link to the video! th-cam.com/video/12Wh2824UFw/w-d-xo.html
Ciao puoi mettere sottotitoli in Italiano io dovrei cominciare tolvatplan a gennaio.per favore
So what happens if I miss a dose or stop taking Jynarque?
Hey Michael! I recently posted a new video where I talk about what happens if you miss a dose! Heres the link to the video!
th-cam.com/video/12Wh2824UFw/w-d-xo.html
Hey! Just wondering how much water you had to drink at the beginning and if it went down over time?
Good question! I drank alot! Even in the beginning! I answer this question more in depth in a new video I posted! Heres the link to the video here: th-cam.com/video/12Wh2824UFw/w-d-xo.html
Update ur latest videos
I couldn’t take the 45mg and 15mg .. I was miserable going without sleep from being thirsty and peeing every 20 to 30 mins so the doctor sent in a lower dose for me 15mg and 15mg well the thirst wasn’t as bad but I was still peeing every 20 to 30 mins ugh...I may try it again next week it’s just hard when I have things to do during the week and cleaning clients houses it just doesnt work for me because I can’t get anything done with drinking water and running to bathroom..so since I’ll be off next week I guess I’ll plan on staying home all week so I can live in the bathroom and at the kitchen sink.. if it’s no better in a week I’ll just have to not take it.. I’ll just be at square one again.. it just feels like I need to just accept reality that dialysis is in my future :( unless they come out with something better! Give me strength I’m gonna try this one more time!
This makes me so sad to read! 😢 i hope you were able to tolerate it after a while. I completely understand what you mean! Going to the bathroom all the time is tough, especially if you move around for your job! My father was a dialysis patient and seeing that made me want to pursue this drug as much as possible but i know it’s not for everyone. I’ll try to make more videos about tips and tricks i’ve found that helped me so it can hopefully help you on your Jynarque journey!
Hi,what is your GFR,how old are You?
Thanks for answer
Thanks for sharing
Thank you for sharing.
Did u have any sexual side effects and is it keeping you up at night and make u feel drained
sexually no side effects thank goodness! i make sure to time my dose so it doesn’t interfere with my sleep. in the beginning i do think i felt fatigued but part of that is bc you need to stay hydrated even more so when you’re on jynarque so i upped my water intake and i felt fine!
What is the price
Good question! I just made a video that answers this question. Heres a link to the video: th-cam.com/video/12Wh2824UFw/w-d-xo.html
M about the liver my doctor mentioned liver tests stuff
I have mine at the age 26 can the cysts be drained?
They grow inside the kidney as well as on the surface, and they keep growing. I have heard that especially large or painful cysts can be drained, but only the ones on the surface. Also, if you puncture them to drain them, it increases your risk of infection.
Pls keep your Liver function checked for few months! It might damage your liver.
I come from a family where AdPKD is running for so many generations! I would strongly recommend to get your liver function checked for couple months!
I m ADPKD plz help tolvaptan
Will do Preeti! They would not let me start the drug unless I went for monthly blood tests!
@@preetisrivastava2203 how you are doing now
@@preetisrivastava2203how you doing now what treatment are you taking
Thanks I'm starting this. Your video helps
Thanks very much