Derek Cole documents switching MS medications after testing positive for JC virus on Tysabri. He outlines baseline tests required before starting an oral drug, including blood work and an EKG, and discusses the risks of both medications and how much the new one costs.
Every six months.
Almost over three years (about 3+ years).
$5,400 every 30 days.
$8,400 per infusion.
Biogen.
I am headed back to Duke. Like I said on previous episodes, what has happened? You know, since being diagnosed with Ms. Four years ago, I've been on an infusion medication called Tysabri. It's the most aggressive medication, but again, the problem with being the most aggressive for reducing relapses or further damage is that it does increase your risk for something called pml.
Found myself alone in this vixit in this big city. I found myself alone in this big city in this big city. I feel safe around skyscrapers she got that soul that lives to breathe Nature she's this angel I'm the dream chaser.
So every six months since then, I've taken what's called a JC virus test to make sure I'm not positive. Because once you get positive, you have a greater risk for pml, which is another kind of brain, kind of brain disease, but it's very, very fatal and disabling. So you obviously don't that. So anyway, my last trip to Duke for a checkup, did a JC test and came back positive. So I went to my next infusion the next month and, you know, told my nurse what's going on. She said, well, let's not do the treatment, but let's, you know, look at the test again. So we took the test again, came back positive, actually a higher number than what Duke had. So again, made it a decision at that point to, obviously, you have. You have to change medications. The Sabri has been great for me as far as my body reacting to it, as far as my tolerance for it. But again, the problem is now I'm JC positive and kind of the risk pretty much doubles every year you stay on the medication. So I've been on it for, you know, almost over three years now. So it was bound to happen eventually probably. So anyway, I'm going to do. Today we're looking at medication. It's a pill, not an infusion. It's an everyday pill. It's called Gilenium. So with any medication with ms, there's a. There's like everything else, there's an upside and a downside to taking the medication. So today I have to go for a blood count test, a liver function test, EKG and eye exam, just to, you know, kind of give us a baseline to make sure that I am healthy enough to take the medication. But then it's kind of gonna. It's gonna be an on test, because one of the side effects or the multiple side effects of Gilenia is a chance for heart problems and liver problems. And blood cell count problems. So we're gonna test today to make sure I meet those standards for the medication. And then it also will give us the baseline of where we're start. And as we go on with the testing, we can determine. You know, the scary thing is you don't, I guess with any kind of medication, you don't. You don't know how your body is going to react to it, how it's going to take it, or how it's going to affect the Ms. I mean, you're not sure how effective it's going to be. There's about four options really presented to us. And after, after much research and thinking and praying, this is the one we're going to try and we're going to go with, see how it goes. So today is really just a. Just a test to make sure I can take the medication. And once I get. Once I pass this test, if I do, which, you know, I don't have any belief that I won't, is a $5,400 medication every 30 days. And now I have to jump through the hoops of getting approved with the medical manufacturer for some co pay assistance because obviously we can't afford that. But it is better than Tesabri, which I did get approved for, but that's a. That infusion was at $8,400 infusion, so whatever my insurance didn't cover, Biogen, which is the maker of Tassabri, covered the rest of that, which was awesome. So hopefully the same thing will happen here with Jelenia. So we'll see. I'm waiting at Duke in this very small room.
Let's be real yeah, yeah I can break every record this isn't my choice yet I still hold the pressure Been hearing her voice in that vision I got back just a plane to get away but how I feel is above all that it has this above all that the stars and the mountains align I'm about to set this on fire I'm about to travel through time to learn how I made it. How I made it for us.
Seven tests done Going back to work.
City in this city yeah Sam.
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