A few weeks before Christmas, I went in for my double dose. (A biannual MRI followed by a follow-up appointment with my MS Specialist). The morning of my appointment was like any other recent morning. I woke up early, did my work out (I was training for a 5k), and went to work. You know that saying Wake up, Kick Ass, Repeat? Well, that was my mantra. Finally! After years of just being able to Wake up and Repeat, I was KILLING it! I’m sharing this with you because what was said during that appointment doesn’t, and to be quite honest still doesn’t make much sense to me.
As I sat in the waiting room waiting for my Dr to come in I began to get a little antsy. Antsy because I still had work to do and had a hair appointment to make, I had shit to do! Or so I thought. A few moments later my Dr. came in with a packet that looked pretty familiar. He set the packet down first, greeted me, and then sat down and asked how I was doing.
That’s not for me is it? I asked completely ignoring him.
He looked down, and said something that sounded like he hated these types of visits. He then proceeded to tell me that he found 5 more lesions on my brain, three of them enhanced, or new, on the latest scan. The scan was done a few days before.
If you haven’t read any posts before this one. This would mean I have 65 lesions on my brain.
I sat there trying to compose my self and began to ask how this happened, he couldn’t answer me.
I burst into tears.
I don’t understand! I have so much energy, I’m able to do two a days! I’m training for a fucking marathon, okay 5k, but still! I haven’t had this much energy in years!
How is this possible?! I felt horrible a few months ago and you told me I was stable. I now feel amazing, and I have an increase in lesions and you’re giving me the drug packet again?!
I have to figure out another drug… again!
There wasn’t much he could say other than the drug I was taking no longer working and it was time to take a new one, a stronger one.
This would be my third drug in a span of three years with this disease. A disease that doesn’t make sense, and doesn’t play by any rules. Where you can have no new activity on your MRI and feel horrible but be stable. Feel amazing but be progressing. A disease, where your disability isn’t measured by the amount of lesions, but how those lesions affect your body. It’s maddening! None of it makes sense, none of it!
He told me about two different drugs that I could take Ocrevus or Lemtrada. He went over the side effects. Both weren’t ideal.
Here’s the deal.
I had plans for my life this year. I finally was in a good place with myself, at work.
- I have a plan to run a 5k with my uncle
- I have a plan to visit one of my best friends in China
- What about my new found romance with the Gym?
- I have a plan to write more
- I have a plan to take certification tests
- I have a plan to live my life finally!
I have plans to do so much in 2018.
What I didn’t have a plan for was dealing with MS and her BS. But you know what they say about plans…
After telling my Dr. I wasn’t making a decision today or before Christmas and needed to think about everything that was thrown at me, I left. I called my Mom, and we discussed every possible solution that didn’t include me changing drugs, but ultimately she gave me the – “You need to follow what your doctor says” advice. I made it to my hair appointment, went home, and went to bed.
I eventually ended choosing Ocrevus. The reasons were simple.
You can go from Ocrevus to Lemtrada, but not Lemtrada to Ocrevus.
Also, a great piece of advice I received was “Find a drug that works for you, and your lifestyle.” So that list that I just gave you. Well…. It wasn’t gonna get done with Lemtrada,
Lemtrada – A 5 day, once a year infusion that will completely obliterate any remaining immune system left, and can take months to years to build back up. This drug has been compared to chemotherapy. The positive? Once you take this bad boy three times, you’re done with MS meds. Forever. The negative it’s a really rough road.
Ocrevus – The new kid on the block. A once every 6 month infusion after the first dose, (the first infusion is halved and taken two weeks apart), Again if it doesn’t work I can try the Lemtrada.
I emailed my doctor a few days before Christmas and told him my decision. My infusion dates were set for February 9 and Feb 23rd at 8 am. While I was relieved to have a decision made, I wasn’t looking forward to it. I wasn’t looking forward to the unknown. Again, I’ve done this now three times in three years. It made me think, will this be my ongoing average? A new drug a year?
And then it started. The spiral.
What about the side effects?
What if it doesn’t stay in my system for the full 6 months and I start slowing down completely before the next dose?
What if I’m sick the entire time that I’m on it?
What if instead of it improving my quality of life it worsens it?
Half of my time was spent in a Ocrevus research daze while the other was spent trying to distract myself. I worked out a lot, focused on work, focused on friends, and tried to live.
I think apart of me thought I might be walking to my death.
 Funny thing is a little less than a year ago I thought the same thing. I had an increase of symptoms and brought it to his attention. The thing was I also had a lot of stress in my life at the time, and stress doesn’t go well with my disease. However, my scans came back normal, no increase of lesions… I was stable.