“Isn’t it a bit unnerving that doctors call what they do “practice”?” ~ George Carlin
Once again, the day has come for me to choose what medicine to take for my multiple sclerosis. After 15 years I have lost count how many times I’ve had to make this decision. Unfortunately, with each new treatment, I continue to progress, new lesions appear and I become more disillusioned.
I almost chose to be on no MS medication at all. But the nurse in me said to keep searching. So with the help of my doctor and family, I made a decision. We built a united front and decided to start taking a drug called Lemtrada.
I was attracted to Lemtrada because it is generally given to people who have tried two or more MS medicines that have not worked well enough. And that’s me.
So my neurologist signed me up. But before I can start taking the medicine I have to go through a battery of test. When compared to other MS treatments, Lemtrada is one of the strongest. That strength also means it has additional safety risk and side effects. So that sucks.
Lemtrada is an IV infusion that is completed in 2 courses. The first treatment is given over 5 consecutive days (1 dose per day). The second treatment is given 12 months later, over 3 consecutive days (1 dose per day). Each day will be 4 hours of infusion plus 2 hours of monitoring for any side effects.
It sounds so overwhelming. And after all these years I still can’t believe I have to deal with this. The worse part is the constant fear of not knowing what’s next.
I already knew I had a bunch of lesions. That wasn’t a surprise. What shocked me was learning I had developed new lesions. That really hit me hard. But In the midst of my depression, I realized the deficits from the new lesions have been with me for a while. So seeing new spots on my MRI really didn’t make a difference since I have already adjusted to the damage it caused. This also shows I am strong enough to continue to adapt if more lesions appear. And that’s the way I have to live my life now, constantly adjusting and adapting.
So despite being a little shaken, emotionally I feel hopeful and happy I still have treatment options available. But I’m also a little sad my choices are running out as I try yet another MS drug.