Maybe it's just me, but the phrase "a sudden change in your thinking" used in various Tysabri paraphernalia has always struck my funny bone a little bit. This is most likely because there is something a little head-scratching about it. What exactly constitutes a sudden change in thinking? I think the phrase is too vague, maybe, and that's why I tend to go down the humor road whenever I hear it. I've discussed this with a good friend of mine, and now it's a running joke with us. If I ever change my mind about something, one of us will say something like "Red flag! Sudden change in thinking!"
I recently received in the mail some dress pants I had ordered. Upon opening the box, I discovered that the pants were dark brown and not the black I was expecting. I checked the slip and my email confirmation and found out that the error was mine. I thought about returning/exchanging them, but decided it would be nice to have a brown pair. Then I thought, "Ooh! What a great excuse to buy some brown boots!" My very next thought was, "Red flag! Sudden change in thinking!" because I have no interest in either shoes or shopping. Then I laughed and went on with my day.
Humor tends to be my default reaction and coping mechanism in life, though, so I recognize that part of my issue is a deeper-seated concern about that phrase in particular. Really, what IS a sudden change in thinking? I know that I would recognize in myself changes in eyesight, balance and strength, but would I be able to recognize a change in thinking myself? Probably not, I'm guessing. And loss of or changes to any sort of higher-level cognitive function is far scarier to me than physical problems.
Anyway, I was glad to see in the recent update on Tysabri and PML some additional descriptors of the mental aspect of PML symptoms: "personality or behavioral changes" and "changes in thinking, memory, and orientation leading to confusion." This is essentially what I thought the original phrase to mean, but it is reassuring to see this expanded description of what to be on the lookout for. As far as whether or not I would recognize such symptoms in myself, I'm not too worried, as my mom is on active watch.
I was also glad to see that Biogen released some more details about the PML patients and their conditions. I'm glad to hear that some have recovered enough to go back to work, but was saddened - though unsurprised - to hear that others aren't doing so well. I happened upon a Facebook group today about Tysabri and PML where people close to some of the PML patients share details of their condition and even includes a video of one PML patient telling her story. I've only glanced through the page, but I will look into it further.
I saw my neurologist on Monday and we had our usual chat about the decision to stay on Tysabri. He brought up a few interesting things. One, there will soon be (probably/hopefully within the year) a test available that determines whether you carry the virus that causes PML, which around 55% of the general population does. The test would certainly provide some helpful information in the weighing of risk. If you don't carry the virus, your risk isn't zero, but is pretty close to it. This would go a long way towards peace of mind. I know my mom would sure appreciate that. If you do carry the virus, the risk is probably around what they say it is now. Another tidbit is that the data seems to be showing a peak in PML infection rates during the 2nd year of treatment, but that the risk declines after the third year. I'm not sure how much weight to give this, as I don't necessarily think there is enough data yet to say that with much certainty. However, as I approach that third year, that information is a little reassuring.
My neuro and I agreed that for now, staying the course with Tysabri is the best option for me. Life before Tysabri was a pretty dismal situation and one I have no desire to return to. I am so thankful for the improvements that Tysabri has brought to my life. So, today I had another infusion. I got to watch a little HGTV, had a great nap, and got to enjoy the Tysabri Treat!
