Wow. Talk about falling off the wagon. The blog wagon that is.It's been almost four months since I last posted. That's what happens when you take a vacation, lose your focus and start thinking about things other than my kidneys.
Which is not necessarily a bad thing.
But I'm still here. I'm still taking Jynarque... six months later. And I'm still hydrating to the tune of one to one and a half gallons a day. Yes, it's down from my two gallon habit but it's so much more manageable.
I'd always thought that the goal of Jynarque was to ramp up the dosage as quickly as possible and to stay at that level as long as you could manage. But after talking with my doctor - and checking with my peeps on the Facebook group - I found that urine concentration (or lack of concentration) was a marker used in determining dosage.
So my doctor and I decided to stay at the 60 mg/30 mg dosage based on my urine osmolality (which is just another way to say pee dilution). The normal range is 300-900 mOsm/kg of water. My results back in June were 155 mOsm/kg, so you can say that I'm well hydrated (and my doctor was pleased). I was re-tested earlier this week and my osmolality went up to 205 but I had travelled the weekend before AND was sick so I'm confident it will be back down in three months. Regardless, I'm well below 300 which is the goal.
As for my other stats, I'm good. The monthly liver tests are stable, as is my eGFR. Nothing's improving, but that's not the goal. Both my doctor and I are please with how I'm doing so, so far, the Jynarque "experiment" is a success
Do you think your flank pain is from Jynarque or cyst pain? I have been on Jynarque since April. My flank is getting worse, especially when I am on my feet for long periods of time. My breathing is also somewhat labored. I also have Crohn's disease so they want me to have a CT scan, but I think it is either from my cysts or Jynarque. Do you think your fatique is from kidney disease or from Jynarque?
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