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Expensive but affordable

There's no denying it. Tolvaptan - brand name Jynarque - is CRAZY expensive.

The wholesale price is just north of $13,000... A MONTH!

Dear God.

I've searched and searched to find out how much pharmacies are beings charged for the drug, as well as my insurance company, but I've yet to find a source. Surely there has to be some kind of 'negotiated price' like you see with healthcare?!?

My doctor suggested increasing my dosage - after I'd already received the next month's supply - and I about hyperventilated. There's no returning drugs and the thought of wasting $13,000 of pills left me queasy. So instead, we decided that I'd stay on the lower dose for another month and then increase the dose the next time. Deep breaths...

Regardless, Otsuka (manufacturer of the drug) is working to make sure that the patients' out of pocket for the drug is manageable.


Through their MyPASS program, patients with commercial insurance can acquire the prescription for a $10 monthly copay which breaks down to $2.50 a month. That's less than what it costs for a 'fancy' coffee!

So, for instance, I believe that my insurance company says my co-pay for a specialty drug like Tolvaptan is $95 a month (still a bargain). Once I knew that my prescription had been approved by my insurance company, I went to Otsuka's Co-pay Support page and signed up for MyPASS. When Avella called to schedule my first delivery, they already had my information on file and with ABSOLUTELY NO HASSLE I was invoiced $10.

Easy peasey.

I've heard grumblings from members of the Tolvaptan Community that it doesn't work quite as smoothly for one of the other specialty pharmacies, but since I have no experience with the others I'll let them speak for themselves.

I'm not sure how long this co-payment supplement will last, but I'm grateful for as long as it does.

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Round 2 deja vu

My doctor decided to keep me at the initial 45/15 mg dose for another months so I'm anticipating a similar water consumption. Here are the first four of seven (?) or eight (?) five gallon bottles of water. My local grocery store has a water bottle fill station for an extremely reasonable 39 cents a gallon. The frugal side of me thinks I should invest in reusable water bottles and take advantage of the savings. The lazy side of me thinks that it'd be a total hassle to wash the bottles, keep bugs and dust from falling into them before I'm able to refill them, remember to take them with me to the store (I can't even remember those reusable shopping bags) and then stockpile a source of bottle caps. It's just so much easier to buy these recyclable five gallon bottles. Lazy beats frugal.

No denying it

So this happened today. Despite being on Jynarque for over a year. Despite increasing the dosage to 90/30. Despite watching my sodium, drinking gallons of water and losing weight. My creatinine levels continue to trend upwards and my eGFR continues to trend down. It's now at 21. Big sigh. Discussions are underway to determine dialysis modality and whether I can do it at home. A fistula consult with the surgeon has been ordered. And I still wait for the transplant evaluation with Mayo (it was rescheduled due to Covid). So if you know anyone who would be interested in helping out a Type O girl with a donated kidney, please send them my way. Take care.

Winner Winner!

Mon Apr 1 2019 - Just look what showed up on my doorstep (okay, it was actually a FedEx driver) by 930am this morning! Super, super exciting!!! I had that box open and my first dose taken in no time at all. My biggest concern now is whether taking it at 930am is going to mess with my sleep. They say that it's best to take the first dose as early as possibly (my plan is 6am) so you can take the second dose as early as possible (8 hours later at 2am) so you're not waking up all night having to go to the bathroom. As it is, I won't be taking my second dose until 530pm. Ugh. Fingers crossed. In the meantime, here's what everything looked like when I opened the box (yes, I took time to actually photograph this momentous moment). After the inspection of the non-med part of the box, I set my bottle of water next to me (I was working from home) and I waited. And I waited. How long would it take before I needed to go to the bathroom?!? Turned out to take 45 min...