Roughly three months ago, I found out I had chronic kidney disease, or CKD.
That was a kick in the pants. I’m already dealing with perimenopause and PCOS, and I was worried about the potential fallout from that. Like diabetes and heart disease.
But kidney disease? Yeah, that was unexpected.
My new doctor kicks ass, though. Because she sent me a message letting me know what my bloodwork said, and for the first time in my life, a doctor was proactive. Along with that message was a notification that I had a prescription for Farxiga waiting for me.
BAM. I had a new diagnosis AND I had a treatment.
So, I went and filled the scrip, started taking it, and immediately life changed.
Because it turns out? I have had CKD for a really long time. I’ve been dealing with symptoms that I didn’t realize were related to kidney issues.
Also also?
Nothing I’ve ever tried for PCOS has worked for me. And if you have PCOS? I want you to hear something loud and clear.
Your kidneys are super involved in waste removal, of course, and fluid management in your body. BUT ALSO – the kidneys are deeply involved in hormone management, managing metabolic issues like insulin resistance, and converting vitamin D to its active form.
SO…what I’ve experienced, I’m piecing together now, is that PCOS made it more difficult for my kidneys to function, which then caused more trouble with insulin resistance, hormone regulation, and vitamin D production, which then made my PCOS symptoms worse.
It’s the most vicious of cycles, and I’ve been trapped in it my entire life.
What has Farxiga been like? It’s been a wild ride these first three months, I’m not going to lie. I both feel better and not better, but in different ways.
In no particular order, here’s what my experience has been like.
Massive Fluid Redistribution
I’ve had issues with edema in my legs for several years, but I didn’t fully understand why. Turns out that when your kidneys aren’t working well, your body can’t move fluid out of itself very well, either.
I haven’t been focused on losing weight, but I have lost more than I have in a long time with absolutely no effort to do so. It’s all water weight, and that is absolutely fine with me.
This is starting to rapidly change my body composition, too, more on that later. I’m still wearing compression socks, but I have less leg pain from swelling and I’m starting to feel a good bit more relief in my lower legs.
Random Cough Gone / Shortness of Breath Resolving
If you’re new here, the reason I found out I had CKD at all is because back in October I couldn’t get rid of a really bad cough. Although, to be honest, I’ve had a random cough for years now. Absolutely years. And I’ve had issues with shortness of breath to the point that lately just walking around the house has left me super winded.
In the first week of Farxiga, my lungs started releasing water and I could breathe better. Almost immediately. In fact, for a couple of days I needed to stop taking Farxiga and it was instantly apparent just how much it had already helped, because I was suddenly unable to breathe again.
I can take deep breaths now and my chest doesn’t hurt. I’m not breathing shallowly all day long. I. Can. Breathe. And it’s a beautiful thing.
All that wheezing and the inability to catch my breath while doing simple things? I was literally drowning. And the rapid fluid movement I’m experiencing just keeps going, and every day I feel a difference in my breathing. I also cough very, very rarely.
Higher HRV
If you’re not familiar, HRV is heart rate variability and at first it’s a little confusing.
The short version is that your heart doesn’t beat at exactly the same interval with every beat. Measuring those differences gives you information about how healthy your heart is.
When that number is low, it tends to indicate that your heart is having more trouble, you’re under stress, or you’re sick. When you’re relaxed and happy, your HRV is likely to be higher.
This is one of the few body measurements you want to be high rather than low. That’s because high heart rate variability means that your heart is responding quickly and well to changes so that it keeps blood moving through your body.
Mine was always low. This coincided with a really high resting heart rate…even when I was lying down. Aaaaand it was getting worse.
Now that there’s a lot of strain removed from my kidneys and tons of fluid is getting redistributed, my heart is a lot calmer.
(If you’re curious how I’m testing HRV, I use the Visible app and Welltory, as well. Both have free versions.)
Better Blood Pressure
My blood pressure isn’t super high, oddly enough. Except when I’m in a doctor’s office, and then they’re usually convinced I’m actively having a stroke in front of them. Welcome to my panic attack!
But since starting Farxiga, my blood pressure is doing a lot better, even in the doctor’s office. The big issue I’ve had with it is my pulse pressure, which is the difference between the systolic (top number) and the diastolic (bottom number).
The issue I’ve had is that my pulse pressure has been high a lot in the last couple of years, even when my blood pressure is bang-on normal or even low. Recently, though, my pulse pressure is slowly coming down consistently.
Cognitive Fatigue
I’m going through perimenopause, and I’m neurodivergent. My executives dysfunction quite a lot. Especially lately.
That’s all to say that brain fog and me are best friends, and I’d love to break up. But it is not to be.
My body is going through a LOT of changes. A lot a lot. And that means that my brain is not firing on all cylinders lately. It sucks, not gonna lie, but I also understand that my body is really busy right now. I’m hoping this clears some.
To be perfectly frank, though, cognitive fatigue is a problem when the CKD is untreated, too, so I’m just fine with continuing to take my meds.
Plain Old Fatigue
Let’s not forget actual fatigue. Because I’m exhausted.
I was exhausted before the Farxiga, and I’m exhausted now. My body cannot get enough sleep and it reminds me of that every single day.
I’m constantly tired, from the moment I get up until I go to bed. And it’s really, really hard to keep up with everything that I have to do as a person, a pet guardian, a caregiver, and as a blogger and writer.
I keep trying to remind myself that I’m doing the best I can, but it’s difficult. And I’m letting myself and other people down every time I turn around, and it sucks.
IT Band Pain / Nerve Pain
This is a new one, and I believe it’s related to fluid redistribution.
Your IT band, or iliotibial band, is a strip of fascia that runs down the outside of your leg from your hip to your knee. The IT band supports your knee while walking, running, and engaging in other movements.
The IT band can get really tight, especially if you sit a lot. Runners can also have trouble with their IT bands.
My left leg has been larger than my right, by quite a bit. It’s been a little more swollen, a little more full of fluid. And now that fluid is shifting. I can feel the changes in my leg, just like I can in other parts of my body.
And apparently, that fluid shifting has caused some irritation in my IT band and specifically in the nerve at the top, at my hip. Massive nerve pain and soreness have been my friend the last two weeks or so.
One night, I woke up out of a deep sleep with nerve pain that felt like a flaming knife stabbed into my hip and then sliced all the way down the outside of my left leg. I’m not enjoying this one at all, but there’s not too much I can do other than some IT band stretches and basically babying the area.
Hair Loss
Remember what I said about how my body is really, really busy right now with redistributing fluid and learning how kidneys are supposed to work?
Yeeeeeah, that means that my body really DGAF about my hair, LOL.
I understand why, but no, I’m not super thrilled about it. But it’s not like I can do much about it until my body is in a better position to put energy and fuel toward growing hair again.
So, the best I can do is keep doing what I can to get back to as healthy as possible, and that benefits every part of me, not just my hair.
I’m a Walking Barometer
Funny story. When you’re experiencing a lot of fluid movement from the deep tissues and organs in your body and all of that is in a state of flux, you’re going to be really, really sensitive to barometric changes.
I was already somewhat sensitive to weather changes, but woooooof, it’s big now. So, yeah, I’m a walking barometer. Possibly temporary? Hopefully.
Lower Fasting Glucose
My A1C was 5.7 back in October, and I expected that, because my fasting glucose numbers have been creeping up over the years.
I’ve said this before, but I have never been worried about my kidneys. Diabetes and heart disease were the big issues I expected thanks to PCOS. So, my A1C being in prediabetic range was not a huge surprise in October.
Just for the record, I test my glucose levels with a meter and via finger stick. I’m tempted to try a CGM, but I know myself well enough to know that I might get too deep in the weeds with all of that data. I’m not super consistent with testing, especially lately. I test maybe once a week now? Sometimes less if I forget.
The first couple of months on Farxiga, my fasting numbers were all over the place. But the most recent ones have been trending downward, and I finally had one under 100 last week. In general, this is great news and might help protect my kidneys even more if I can keep this number trending downward.
Skin Issues Clearing Up
For most of my life I’ve had random skin issues and trouble keeping my skin from creating random dry patches that refuse to clear up at all. My feet have been a problem for most of my life, for instance, and in the last couple of years, I started dealing with a new problem: eczema.
There’s one particular spot on the back of one of my calves that has been a real pain for several years now, and nothing was helping much.
Since starting Farxiga? Feet are almost ready to start paying the rent and that eczema patch is almost gone. That’s massive. And the more I learn about kidney issues, skin trouble is a common symptom.
Vision Changes
Okay, vision issues. What I mean by this is random blurriness, trouble focusing, and they get tired a little quicker than they usually do.
This makes sense if you have diabetes or know someone who does. Blood sugar changes cause vision issues, but fluid changes cause them as well.
And I’m experiencing changes in my blood sugar levels and I’m experiencing some big fluid redistribution in my whole body. So, I expect this won’t calm down much until those big changes settle down and equalize.
I’m pretty sure that is going to take a while, honestly, because I can tell now that I have a lot of fluid trapped in my body still.
Whew! This got long, and I didn’t expect that. But these are the big things I’m noticing after three months on Farxiga.
Would I ever take it again? Would I still take it? Absofuckinglutely. This medication is saving my life, literally. The changes I’m experiencing can be overwhelming at times, but they’re just how it goes for now and I’m confident that I’ll feel so much better as my kidneys and my body finish adjusting.
Like what I’m doing here at Good Zookeeper and want to help keep the lights on or just buy me a coffee? Thanks so much!
