FDA investigating case of progressive multifocal leukoencephalopathy (PML) in person who was taking Gilenya. Great. Here we go again. That was my first reaction to that news since I take Gilenya. And because I spent nearly three years on Tysabri fearing PML. I have never been tested for the JC virus that reactivates in people with suppressed immune systems causing the development of PML. When I decided to stop taking Tysabri, I did it because I didn’t feel it was working for me. I continued to have progression. But I’d be lying if I said that the risk of PML wasn’t a factor as well. Since my decision was made, I didn’t feel the need to be tested for the virus. Now I want the test. It’s probaby better to know.
At this point, we don’t know what part Gilenya played in this case of PML. The information released so far notes that the patient was on other immunosuppressant drugs before starting Gilenya, had multiple courses of steroids prior to starting and while taking Gilenya, and may have had lesions atypical of MS on their MRI. So I’ll wait for more information to come out. Read more about the case in this article.
The question I’m always asking myself with my MS meds, is how much risk am I willing to accept? I accept the risk of seizure with Ampyra. I accept the risks of heart problems, eye problems, and infections with Gilenya. Now will I need to add PML to that list? Weighing the risks of my medications versus the risks of my MS progressing isn’t that easy.
What I do know for now is that I fear MS more. I’ve experienced what it can take away. But some drugs with less severe side effects would be nice. I have enough to worry about.
Do you know your limits? Everyone has them for one reason or another. Multiple Sclerosis limits my ability to do what has become quite a long list of tasks. I know what those things include. I can’t run from someone if they chased me. I can’t walk around the block, even with my cane. I can’t close my eyes while standing and not fall over. I could go on, adding all types of actions that I can’t accomplish because of MS.
Knowing your limitations is quite different. After over 15 years with MS, I’m still struggling to come to terms with mine. As I sit here writing this post, I am at home on a regular work day nursing several cuts, scrapes, and sore muscles. Why? Because as I was leaving for work I noticed the garbage can. It smelled. It’s garbage day. So, I thought, I’ll just take it to the curb. It has wheels. And as I wheeled it down my sloped driveway I went down with it landing on the pavement. I scratched up my elbow, my knee, my ankle. Since it’s the morning when I have more energy I was able to get up. I was able to put the can upright. I slowly walked up the driveway and into the house.
I wanted to go into work early today. I was off to a great start too. But now I was bloody, in pain, and in tears from defeat. One bad choice had changed the direction of my day. What did I think I was doing? Answer: What any normal person would do on garbage day; take out the garbage. The flaw in my thinking was not first asking if this was something that I should be doing.
In all honesty, it did cross my mind. Briefly and then the thought departed. The part of me who wants to do regular daily tasks without care just did it. And that’s where the problem lies. I might know what my limitations are, but do I always accept them? Clearly not.
Cleaning and dressing my wounds, I engaged in a couple hours of self-loathing. Ridiculing myself for bad choices. But if you think it’s easy to give in, to admit your inability to do something, it’s not. It may be, for me, one of the most difficult parts of having Multiple Sclerosis. I just want to go. I just want to do. I don’t want anything in my way.
I’ve adapted in so many ways to live a life with MS. Clearly I should be able to make this adjustment as well. I pledge to keep trying.