Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

new to Jynarque

majourja
majourja

Hi! I started Jynarque 2 days ago. Day one went flawlessly. Had to pee every time I turned around. Other than that, nothing extraordinary. Day two was a ittle better. Didn't have to go to the bathroom nearly as urgently. Still had to go a lot. That evening, I had a few sharp pains in my left kidney; laid on my heating pad and it was soothed. Day three (today) I woke up with a tremendous amount of low/mid back pain and can't really move around much. Since it is Sunday, I don't really care to go to the Emergency Department, and will probably make a phone call to my nephrologist in the morning. But I am wondering if any one out there may have the same or similar experience. 

Juliagrace008
Juliagrace008
My dr. just prescribed Jynarque but after talking wiith the company my insurance approved it but my copay is $3426 for 28 pills. I will not be able to take it because I can;t afford it. Did you get help in paying for yours? Thank you. Julia King-Smith
ceroley
ceroley
Dear Juliagrace008: My partner started taking Jynarque on Tuesday, 10/23/2018. You may or not be aware that the Jynarque manufacturer, Otsuka, has a special co-payment assistance program called My PASS (Personalized ADPKD Support Service) in which you can enroll at the Jynarque website by clicking the "Copay Support" link. Enrollment in the My Pass program includes copayment assistance as well as other benefits described on the website. If the $3426 you mentioned is truly a co-payment and not a deductible or other co-insurance amount for which you are responsible under the terms of your health insurance contract then the My Pass program can reduce that deductible to $10.00 per 28-day supply of Jynarque. Please see the website and/or speak with a Jynarque My PASS representative via telephone for details. I hope you will qualify to have that $3,426 reduced to $10.00.
ceroley
ceroley
Dear majourja: My partner started taking Jynarque on Tuesday, 10/23/2018. He has not reported any back or flank pain to date. However, he has indicated that after he takes his 2nd does at approximately 1:30pm each day he feels pressure and/or tingling in his head. We noticed last evening that his blood pressure has increased from what had become near normal (near 120/80) thanks to two antihypertensive medications and his resting pulse rate was in the mid to upper 40s BPM where it is normally 59 to mid 60s BPM. I fear that the Jynarque (tolvaptan) in conjunction with his Losartan (for hypertension) is causing his potassium level to increase beyond normal. His nephrologist wants him to double the dose of Losartan starting this evening to bring down the blood pressure, but I fear that will be dangerous because he already has symptoms of a high blood potassium level.
TheFrau
TheFrau
Hello,

I was part of the clinical trial for tolvaptann (Jynarque) and also currently take it, and the only issue I had was with going to the bathroom excessively. My blood pressure has been stable (on Cozaar and Losartan.)
majourja
majourja
The pain I experienced was from "dehydration" or so they say. I did finally get the approval through my work insurance. Since it's a Tier 4 drug, the copay will be $100/Rx. So I will gladly pay that. :)
I think this medication should be available for anyone who would benefit from it. I believe I can even feel a difference just being on it for a month. My pain has reduced significantly.