I don't talk about MS very much because I'd rather pretend it doesn't exist. I'd like to pretend I don't have it because there are people who have it much worse than I do. I know what it's like to lose someone I love more than anything to a crippling disease--and my disease isn't crippling for me. It's crippling for some people and I'm very lucky I'm not one of those people at this point in my life. But no matter how much I want to pretend it doesn't exist, it's not just going to go away.
When I began this journey, I started taking Copaxone. It's a drug in the form of injections. Its job is to slow down the progression of multiple sclerosis. Ideally, it would lengthen the amount of time between the attacks on my brain (or make them stop altogether). I gave myself the injections every other day for months and had another MRI which showed us the Copaxone was not effective for me. It was scary to hear but I was not a fan of giving myself shots 3-4 times a week, especially considering my dislike for needles. So, we went over our options and I started taking Tecfidera. This is medication in the form of pills. I take one pill twice a day. While I was super happy to be taking pill instead of doing injections, I have really odd reactions to the pills (which are apparently common). Basically, it feels like (and looks like) I have a terrible sunburn, I feel very heavy and tired, and I pretty much have to sit or lie down. I'm not sure why it happens, and obviously it's not the end of the world, but wow, it's frustrating to plan around.
The worst part about the medication are the risks that are associated with it. By taking the medication, I put myself at risk of getting PML--or progressive multifocal leukoencephalopathy. PML is diagnosed after the JC virus is reactivated in the brain due to a medication which suppresses the immune system (like mine). JC virus is present in the brains of many, many people but exists dormant in most. Because of this risk, I have to get bloodwork every 3 months as long as I'm on Tecfidera. As long as my bloodcounts stay in a normal range, I'm not at risk for developing PML.
Risk #2. Women cannot continue taking Tecfidera through pregnancy. This means if I decided to have children someday, I would have to stop treatment and risk relapse. To continue taking Tecfidera would be an incredible risk and decreases the chance of having a healthy baby significantly. My doctor pretty much made me promise that I wouldn't get pregnant while taking the medication, and while I'm definitely not planning on getting pregnant any time soon, it's something I fear as I think about my future.
2 pills x 365 days = 730 pills a year x 50 years = 36,500 pills over the next 50 years if I continued this medication. Isn't that crazy? The cost of the medication is even more insane. If I were not insured, the cost of Tecfidera would be $2,750,000 over the next 50 years.
I don't understand why I was given this challenge, but maybe I will someday. I can say that everything I've gone through in my life so far has had a purpose--I would not be nearly as strong as I am without all of it. Perhaps God's plan for me is to help others like me, and as I grow to understand this disease, I hope I'm getting closer to being able to do that.
