Starting Jinarc/Tolvaptan

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Posts: 2
Joined: Sat Aug 04, 2018 8:55 am

Starting Jinarc/Tolvaptan

Postby Cheri » Mon Aug 20, 2018 10:11 pm

Hi,
I'm 36 years old, and was diagnosed with PKD Type 2 when I was 27. I was told type 2 is not as bad as type 1??? Feeling this isn't so true anymore for me!

My current GFR is 62. Creatine is a bit high but has come down to almost normal range. However, I just had my 2nd little boy 7 months ago. I think 2 kids and several pregnancy loses (2 miscarriages, and losses at 22 and 19.5 weeks) have taken a toll on my kidneys. My nephrologist advised me no more babies. It's a tough thing to accept this little boy is my last. My husband and I always wanted 3-4. I stopped nursing to start taking Jinarc. Also I worry about my boys having it. Especially scary since my 5 year old has Type 1 Diabetes.

Since my GFR was in the high 80-90s when I was first diagnosed almost 10 years ago and now in the 60s I'm in total panic! I'm the only one in my family that has it. I have a sister with the same blood type who has already said she would give me her kidney. And also my sisters best friend. Feel like I'm only months away from complete failure! I've cut coffee. So hard with two young kids!

Anyways, I received 80% coverage for Jinarc and the company will cover me for the remaining 20%. I'm scared how this med will change my life. Can anyone give me any pointers. I should start taking my first pills this weekend. How much water should I expected to drink? I'm 5 6" and 135lbs... Any other side effects anyone has experienced? Is working full time realistic? Diet changes?

Thanks in advance as I start this journey to keep myself alive as long as possible for my kids and husband (he can't donate as he only has 1 Kidney)

Jennie

Re: Starting Jinarc/Tolvaptan

Postby Jennie » Sun Aug 26, 2018 5:39 pm

Hi Cheri,

My name is Jennie. 49 years old and was diagnosed at age 26 while pregnant. My current GFR is 33 (as of today) and I am 8 points away from being worked up for the transplant list.

Take a deep breath and try to stay calm cuz at times (like now) it can be really scary. I hope you have a great doctor who you believe in and is the kind of advocate that you need. I find that my doctor plays a very big role in keeping me from bursting at the seams and losing my mind. If you don't have this, find a doctor who does this for you. It's a long journey and you need people around you that make this doable.

I started Tolvaptan two weeks ago. I finished my 45/15 doses last week and have moved on to the 60/30 with no issues. From what the pharmacy is telling me everyone responds differently to the meds but so far I have had no side effects other then increased thirst and urination. Totally manageable! I too worried if I would be able to deal with the sides effects but so far so good. I try to drink about a gallon of fluids a day. It sounds like a lot but just make it a priority and always have a drink with you. Break it up throughout the day... it's 8 16 oz bottles of water (or whatever beverage a day). Totally doable! Taking this med has not changed my life in the slightest so far. This method works for me but you will need to find what works for you. Move forward confidently and be in constant contact with your MD with any questions/concerns. This med is new to us all so we are all learning.

SSMpkd

Re: Starting Jinarc/Tolvaptan

Postby SSMpkd » Mon Aug 27, 2018 7:14 am

I have been on Jinarc for almost 3 years, 45/15 the entire time. I was diagnosed when I was 27 and am now 45. My GFR just dropped to 57 however I am (for the most part) extremely healthy.

Jinarc has not had a huge impact on my life style, on a day to day basis. The first couple of months was all about getting used to needing water and washroom plans. How much water to bring with me, where is the closest washroom, etc. Now I barely even think about it. I always have a refillable bottle with me, make sure I have water when I exercise and always visit the ladies room before I leave anywhere. I typically get up 1-2 times a night now, however at the start it was much more frequently. I am drinking about 5-6 L of water a day. I avoid caffeine, minimal alcohol and for me, l sleep and staying active help me feel my best.

Good luck and just remember that there are far worst fates in the world than PKD :)

Posts: 2
Joined: Sat Aug 04, 2018 8:55 am

Re: Starting Jinarc/Tolvaptan

Postby Cheri » Mon Aug 27, 2018 8:25 pm

Hi Jennie,

Thank you for your response. I can't help but think I'll die before I get a match :(
Not sure where you live, but I live in Vancouver BC. I just want to know if my sister is my match and as stupid as it sound I would rather go into failure sooner than later as I know younger age is on your side when your on the transplant list here. Also, they won't explore testing my sister until I'm in the stage of needing transplant. I also have a lot of guilt right now knowing my 2 boys could have it. I'm most worried about my 5 year old, he was diagnosed with Type 1 Diabetes when he was 3... if he does it's obviously a bad combination...
We're headed to diabetes camp in a couple days, and I decided I'll start next weekend when we get back.

Do you work at all still? Is it easy to work a full time job while taking Jinarc? I do have a very supportive family dr and nephrologist who would put me on medical/disability if needed.

Jennie

Re: Starting Jinarc/Tolvaptan

Postby Jennie » Mon Aug 27, 2018 9:50 pm

Hi Cheri,

It can definitely be overwhelming living with a chronic disease hanging over your head every single day. As I get closer to the transplant list, the reality of this illness can at times be paralyzing. I have my days where I allow myself to have a pity party but set an end to it and then move forward. What choice do we have?

Try to remain positive. I know, easier said then done (I really, really know!). Compared to all of things that a person could have, it could be so much worse. At least there are a couple options for dealing with this and now we have the prospect of this new med. Having your sister with the same blood type is a good start. Be thankful that you aren't at the stage yet to need to know about transplant. My hope is that this med will work for you and buy you time before needing to explore your options as that is my hope even where I am in the disease process.

I do still work and as I said I am having no issues so far. I am completely healthy other then the PKD and still feel great. I truly hope that you will have the same experience.

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