Ocrevus: Nine Month Perspective

If you're reading this, there is a decent chance that you found this blog by googling "Ocrevus." Since I started blogging in August 2017, the page that has accrued the most page views by far is "Adventures in Ocrevus." When I wrote that post, I was only a few days out from my first half-dose of the medication. Given that Ocrevus - aka ocrelizumab - was only FDA approved for use outside clinical trials at the end of March 2017, I was in the first cohort of people to take it outside the controlled trial environment. Before starting it, I joined a Facebook group for patients using "O." The group was about 300 people. Now there are several private Facebook groups centered on Ocrevus, most with thousands of members. As the drug proliferates "into the wild,"these groups see a constant stream of new members, most asking the same questions. Today I will share my perspective as one patient using Ocrevus - the good, bad, and awkward. (Disclaimer: I am not a health care professional, and opinions expressed here are just that - my opinions.)

Ready? Okay, let's start with some of the most commons questions asked about Ocrevus:

Will this cure my MS?

No, sorry. There is no actual cure for MS (at least not yet). Some people have experienced very long remissions after a course of alemtuzumab (Lemtrada), and there is some promise for hematopoietic stem cell transplantation (HSCT) in future, but the science isn't quite there yet. Ocrevus is definitely not a cure, or even a "cure," but it also has lower risks than alemtuzumab or HSCT.

How is it administered?

A full dose of Ocrevus is 600 mg. To give your body a chance to adjust, the first dose is split into two 300 mg doses, two weeks apart. After that, the typical dosing schedule is 600 mg every six months. It is given intravenously, as a slow drip over several hours. Once you arrive at the infusion center, a nurse or other personnel will take vitals and basic measurements like weight. After the IV is inserted, pre-meds include an antihistamine (typically Benadryl, two tabs taken orally) and 100 mg of solumedrol pushed into the IV. This is a much smaller dose than is used to treat relapses (typically 1,000 mg/day for 3-5 days). The pre-meds are given to reduce the chance of an allergic reaction. Remember, Ocrevus is going to be killing depleting your B cells. Your body may get pretty annoyed about this. That's also why they repeatedly check BP/pulse and body temp. The drip is a slow one, and takes at least 4 hours. It will take longer if you have a reaction and have to slow down. I personally have the same reaction every time: a bit of an itchy throat and ears, like my seasonal allergies are acting up. Twice we have paused the drip then resumed. Last time I was antsy to get things moving, so the nurse pushed some more Benadryl and a little more steroid into my line. I took a nice nap and got it over with. With the hour of waiting time afterward, it typically takes me about 7 hours at the infusion center. Bring snacks!

Will my hair fall out?

Eh...maybe? I thought I experienced some mild hair loss, but couldn't be sure. It just seemed like more was coming out in my hairbrush than usual. I mentioned it to my dermatologist, who recommended I change vitamin D brands (she recommended GNC, although I don't know enough to endorse it) and have my iron tested. I was a touch anaemic, and started iron supplements. I haven't noticed any hair loss since. My primary care doctor also theorized that I had telogen effluvium, a fancy word for stress-induced hair loss. This is also completely possible.

What about cancer?

I am in the fortunate position of working with a bunch of people who have doctorates in biostatistics and epidemiology, so I ran the cancer data from the trials by them. They said that given that the cancer rate was within normal population limits in the Ocrevus group, the real fluke was that there wasn't more cancer in the control group. Obviously, I keep up on all my recommended screenings, but I'm not very worried.

Will I feel worse immediately afterward?

Very likely! Again, the drug is killing off altering part of your immune system. I felt like absolute crap after my first half doses, but it leveled off. After the first full dose, I was fine. I even felt energized from my top-up.

Will it improve my symptoms?

Maybe. Ocrevus was developed and tested to halt progression, not to treat symptoms. For me, it has done what it was supposed to do: since starting it I have had no relapses and no new lesions! Many of the old lesions have shrunk. I do feel better than before starting it, but my theory is that halting the inflammatory processes has given my body a chance to catch up and heal a bit on its own. [Note: I have relapsing-remitting MS. I can't speak to Ocrevus in progressive MS.]

Can I work if I take Ocrevus?

I couldn't work without it. My brain is functional again. I did a 3 mile charity walk in the heat two weeks ago. YMMV, but I can't imagine doing what I do without this treatment.

I heard that some people on Ocrevus still have relapses. What's that about?

Well, it reduces the frequency of relapses, but you still have MS. Per my neurologist, a single relapse or new lesion is not typically enough to pull a person off Ocrevus if they are otherwise doing well.

There seem to be some scary things about Ocrevus, and all MS medications. Should I just wait?

MS was hiding inside me and progressing for quite a while before the relapse that sent me to diagnosis. I personally refuse to let it progress any farther. Ocrevus is my best weapon in that right now. Nobody can tell you what to do, but I absolutely am very happy about my decision to use this treatment - and I'll likely be first in line when something even better comes out down the road. 


What other questions do you have about my Ocrevus experience? Throw them at me in the comments!





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