My Life with MS: Starting Ocrevus #multiplesclerosis

An update on living with MS, and the treatment I just started, called Ocrevus. 

It’s been a while since I’ve updated my struggles with MS, so I thought I’d let you all in on what’s been going on.

Last year I tried Aubagio, which gave me all the side effects and none of the benefits. After a 4-month break, I tried Techfidera, which just made me sleep all the time. I could sleep 12-16 hours and need a nap 4 hours later. Really hard to function like that, so I went off it.

Last week, I started a new drug called Ocrevus. Unlike Aubagio and Techfidera, Ocrevus isn’t a daily pill, but an intravenous treatment that is given once every six month.

Because of the strength of the drug, the initial dose is actually broken up into two, with the half-doses given two weeks apart. This is so the body can slowly acclimate to the drug and also to make it easier to spot any problems.

Each half-dose takes about 4 hours to deliver. I was given a dose of Benedryl before we started to help lessen any potential reactions. About 2 1/2 hours in, my throat started itching and then started swelling up – a typical allergic reaction to the drug. I could still breathe, but it was difficult to swallow.

I got another half dose of Benedryl and then when the swelling abated, they finished the Ocrevus treatment.

An update on living with MS, and the treatment I just started, called Ocrevus. 

The day after, I woke up without feeling like my brain was in a fog for the first time in a few years. I was super productive that day.

The second day after, I got the headache they said would come. I would call it more a head-exploding migraine, but a few Tylenol and a nap later, it was just a dull roar.

As I write this, I’m one week into the dose, and it seems as though I’m sleeping a bit more than usual but not so much I’m not getting anything done. The brain fog also seems to still be lessened.

I go in for the rest of the Ocrevus dose next week on April 24, so if you can spare a good thought/prayer/positive energy, I’d appreciate it. I’m hoping the full dose will help me get through the hot summer, since last year, my MS took a beating when temps went over 90 degrees.

If all goes well, I won’t have to have another dose until October. Provided my insurance will pay for it. It was like pulling teeth just to get the initial treatment approved. But getting through the summer is my main priority.

I know I have some readers who have MS, too. What are you taking for it? Have any of you tried Ocrevus?

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Comments: 2

  1. Jeff Wetherington April 20, 2018 at 5:06 pm

    Sending good thoughts your way 🙂

    • zengrrl April 21, 2018 at 9:47 am

      Thanks Jeff! <3 I can use it.