Sound the Alarm

It's been a while since I wrote about my MS. Oh, stop groaning; it's not going to be a whiny post today.

Anyway, it's been a while since I wrote about MS. Two medicines ago, in fact.

Last time I wrote about MS, I was on Tecfidera. I had virtually no side effects on it but I was concerned about compliance when we go on vacation. Tecfidera is an oral medication that has to be taken with food twice a day, ideally at the same time. I wasn't sure I could commit to doing that while we're away. After talking with my neurologist, we decided to try Tysabri* again. I was on Tysabri many moons ago, but my old neurologist stopped it because my white cell count was starting to climb. He didn't want to risk me developing PML.

Anyway, my current neurologist seemed to think it was worth trying again, especially given my track record of blowing through treatments. Up to that point, I'd taken 5 different MS medicines, including Tysabri.

After my insurance company approved Tysabri for me, I scheduled my first infusion.

Now I'm in the infusion center. The nurse had no problem starting the infusion, but the alarm insisted on beeping repeatedly, to the point of being obnoxious. As the alarm kept ringing and the nurse decided to change my IV, I just kept thinking that this was the Universe's way of telling me that I shouldn't get this infusion.

Ignoring the feeling inside (something I know better than to do), I let the infusion proceed. Because really, what am I going to say? “Um, the Universe is telling me not to get this infusion”?

The nurse changed the IV, and the Tysabri started flowing freely into my veins. And I got itchy. First the back of my neck. Hmm. Coincidence? Then my lips started tingling. Double hmm. Then I started coughing, sneezing, and felt my throat constricting ever so slightly. Then the IV alarm beeped again.

When the nurse came over to check my IV, I told her what was happening. She checked my back and the back of my neck. Lo and behold, I was breaking out in hives. Of course I was. The nurse stopped the infusion, called upstairs to my neurologist, and explained what was happening. She came back and told me, “When I told ___ what was happening, she said 'that's weird'. I've never heard her say 'weird' before”. I told the nurse it's very fitting that my neurologist used that word in connection with me.

The nurse gave me a steroid infusion and a couple of Benadryls. After a bit, my reaction started subsiding. She made me call for a ride home because of taking the Benadryls.

I made an appointment to see my neurologist. When she walked in the exam room, she just laughed. She's really getting to know me. After she stopped laughing, she said, “Now what are we gonna do”?

We talked about my (limited) options, and we decided to try Aubagio**. Aubagio is a once-daily oral medication that doesn't need to be taken with food. There are some risks (of course), but we're doing blood work once a month to watch for those things. So far, I don't seem to have any adverse reactions to it, and I'm nearing the end of my second month on my little blue pill. No, not that little blue pill! 

I would have loved to try Ocrevus***. Ocrevus is an infusion given twice a year after the initial dose. But my neurologist told me that it might be linked to breast cancer. Since it's relatively new, we decided that I shouldn't risk it. Perhaps if new data comes along, we'll revisit it, but for now I'm happy on the Aubagio.

Through all this, how are my symptoms? I'm still walking, so there's a major plus. I don't feel much worse than I did last year. Struggling to breathe through a messed-up nose really pushes other things to the back burner!

*Tysabri is a disease-modifying drug developed specifically for MS. It's given once a month as an infusion. It's also linked to PML. Here's a link about Tysabri and PML if you want to read more.

**Aubagio is an oral medication developed specifically for MS. Here's a link about Aubagio if you'd like to read more.

***Ocrevus seemed like the perfect drug for me. An infusion twice a year? Amazing! If you'd like to read about Ocrevus, here's a link.