Dear Nina....

Dear Nina, if you notice any problems with your legs, please call your neuro asap.  I promise, if it didn't get better after a few days, it probably means something is wrong. You know that you have no problems walking around a Target or in the parking lot without the need of a shopping cart.  That wasn't normal.

But hey, guess we get to remind you about the steroids now.

Because the legs have been bothersome for a few weeks (and essentially the worst they've been, especially when walking to the bathroom was such a struggle), it didn't seem like such a shock when the Nurse Practitioner said the word "steroids" to you.

Day one: new found energy, like move furniture and do some fancy stretches in the middle of the living room energy.

Day two: slowing down, looking forward to your next dose of steroids, hoping for the same burst of energy.

Day three: realize the energy didn't come again, get a little more rage-y and tired.

Day four: super rage rolls in, you're so uncomfortable because you haven't peed in 6 hours, and your legs are still bothering you.

Day five: here's the day where you'll feel like someone pushed you down a spiral staircase, and then beat you with a pinata stick, just to make sure you were down.  Muscles hurt that haven't hurt before, legs are still super heavy, and the fatigue is out of this world. With the time change, you almost went to bed at 7pm, but forced yourself to stay up until 9.  You won't sleep though, because you'll have the urge to pee shortly after you do fall asleep. every 40 minutes.

Day six: exhaustion. It took almost all day just to wake up. Muscles still hurt, your head feels like it might implode, and your legs are still so fricken heavy.

Ocrevus

So the last week of January was my first dose of Ocrevus. The week before, I spent hours packing my bag for my day at the IV clinic. I packed all of the snacks, a lunch, a water bottle, Nintendo switch, iPad with movies/shows, noise canceling headphones, a book, battery pack, phone charger....lo and behold, I didn't need 90% of the items in that bag.

So the day came, and when you show up they require some loading medication and it starts by giving me two Tylenol pills, an injection of a Benadryl and then an injection of 125 mg of solumedrol. These are to prevent any weird symptoms from happening or side effects. I noticed I was feeling a little off within 15 minutes, almost like I was high from the Benadryl. It also made me really sleepy right away. Half an hour after getting all of those pre meds, we started with my half bag of medication.

I arrived at 8:00 a.m. and left around 12:30. In that time I listened to one podcast, and watched two shows on Netflix that I had downloaded to my iPad. Going forward, I know I only need to bring my noise canceling headphones, the iPad, a warmer blanket, snacks, and a water bottle.

I definitely didn't feel as crappy as I did after my last medication, Mavenclad. I was mostly tired and had a crazy headache in the afternoon, but a Motrin was able to stave that away. I also took a Motrin just before bed to prevent any other weird side effects. I did have a bit of uncomfortable bloat and crash from the steroids a day or two later, bit it wasn't too bad.

Fast forward two weeks and we did this all again. Same pre meds, less packed bag, same headache and crash, but now I don't have to do this again for another 6 months.