Once again, I’m going to start off this post with a bit of a disclaimer. I’m not endorsing one medication choice over another and I’m definitely not endorsing disease-modifying therapies (DMTs) over other forms of treatment. In the past 15 years of living with multiple sclerosis, I have witnessed people finding success with any number or combination of strategies (both traditional and alternative) to treat their multiple sclerosis. My belief is that the key to living successfully with a chronic illness is finding what works best for us as individuals. When it comes to treatment choices, there are so many factors that come into play including medication tolerance, lifestyle, stage of life, among many more. With that out of the way, I can now share my first experience with Ocrevus, a medication I wasn’t exactly excited about going on.
Most recently, I was taking Gilenya and I have written before about my switch to that medication being life-changing for me after taking injections for about 12 years. Taking a pill was wonderful! All I had to do was take it in the morning with my vitamins and that was it. The ease of use was incredibly freeing and was working wonders...until I found out it wasn’t working for me any longer.
Unlike in the past, this current decision to change medications wasn’t one that I sought out. MS forced me into making a choice out of necessity. Even though I have been feeling great and presenting with no new symptoms, my last MRI in December showed significant new activity — enough to warrant my practitioner to suggest that we switch my medication. The recommended medication was Ocrevus.
I was hesitant about going on Ocrevus. In my mind, I had envisioned this medication as a “last-ditch effort” if no other medication was working. It was a bit of a mental struggle for me to embrace the thought of this new medication. The news about my MRI results was a real blow to my morale and served as yet another wake-up call. I could feel great on the outside but MS was still working at wreaking havoc inside my brain. Lurking, if you will. It was time for me to discover yet another “new normal” for my life, and it now involved embracing this new medication.
So the decision was made at the end of last year to go on Ocrevus. I had to stop taking Gilenya and clear my body of my former DMT. I was told about 6 weeks to 2 months to get Gilenya out of my system. Meanwhile, I had to fill out all of the proper paperwork and forms, and take the appropriate blood tests to ensure I was an appropriate candidate to go on Ocrevus.
By the beginning of January, everything was all set and I was scheduled to take my first infusion, broken up into two doses over a two-week period, at the beginning of March.
The first half on March 2nd was filled with anticipation, nerves, and a nor’easter.
Even though it was just over two months until my first infusion, I felt like my life was on hold waiting to start this next chapter. The anticipation for the first infusion was palpable. I had a nightmare the night before that I had to drive to Washington, DC to get my infusion (I live in Rhode Island). I was on a bicycle, took a wrong turn, got lost and couldn’t find my way to the infusion center. Weird, right?! Obviously, I was a little anxious and like all anxiety or fear of the unknown, I discovered that it was completely unwarranted.
There was a nor’easter happening on the day of my first half dose, and I have to say that the trip to Boston and back were the most eventful parts of my day. The infusion itself was fairly uneventful which is ultimately what anyone could hope for.
When I got to the infusion center on the morning of the 2nd, they settled me into my chair for the day. First, my vital signs were taken and I was pre-medicated with 2 tablets of Tylenol (650 mg). My IV was hooked up and then, as part of the pre-medication protocol, 50 mg of Benadryl was injected into the IV. The nurse was pretty quick with this administration and almost immediately, my head was so light that I felt like I was drunk. The nurse encouraged me to sleep but I was pretty loopy and acting like a silly toddler who didn’t want to nap. The nurse came back with a warm blanket and dimmed the lights. When she asked me if I needed anything, I told her that all I needed was some soft music and a lava lamp. The Benadryl had made me so harebrained, to say the least, that I hadn’t even noticed that 100 mg of the steroid Solumedrol was also injected into the IV and that the 300 mg infusion of Ocrevus had already started.
After thinking everything was hilarious for a bit (including myself), I passed out and slept for a good hour. When I awoke, I felt fine and my head had definitely cleared from the Benadryl. The nurse frequently checked in on me, taking my temperature and watching my vitals. A blood pressure cuff continued to run throughout the infusion and as time went on, the readings revealed that I was getting more and more relaxed. The whole infusion lasted about 2 ½ hours with an hour of observation time at the end. I had no reaction to the medication during the infusion. Before I left, I was told to watch for any possible reaction over the next 24 hours like hives or signs of anaphylactic shock such as swelling of the throat or tongue. Thankfully, I experienced no side effects.
My mother had gone with me to keep me company and in case I wasn’t up for driving home but I felt fine. In fact, with the nor’easter barreling down on New England and traffic being a nightmare, we figured that I drove close to 6 hours that day. The drive was seriously the worst part of that day. The infusion? A piece of cake.
Two weeks later…The second half on March 16th was calm and restful
There was a totally different vibe for my second half dose. I knew what to expect. I was excited to get it over with and everything seemed to run smoothly without incident. There was no weather event impeding our drive and we arrived early for the appointment. This time, I noticed that the nurse administered the Benadryl a little slower. My head still felt light but it wasn’t as crazy as the first time around. I sort of embraced it and took the opportunity to sleep and let me tell you, it was a darn good nap! Again, my vitals and temperature were monitored and I had to stay an hour after the infusion for observation. I’m fortunate to say that the second half was even easier than the first with no incident, problem, or side effect.
Now, all I have to do is wait 6 months and hopefully reap the rewards. I go back for my first full dose (600 mg) in mid-September.
The pros and cons of Ocrevus in my opinion?
- You only have to think about medication every 6 months. It will be two days out of my year devoted to this medication. The rest of the time, I’m free to live my life (and maybe indulge in a bit of denial and not think about multiple sclerosis).
- The reported effectiveness and how people are positively responding to this medication. I’m still at the beginning of this journey but many people with MS have commented on how this medication has been a game-changer for them. Their stories provide me with hope about how I’m going to feel in the future. I am optimistic hearing about their experiences with Ocrevus.
- Cost. This is still an unknown variable for me as I have not yet received any bill or explanation of benefits for this first set of infusions. I’ve seen reports that the annual price tag for Ocrevus is $65,000/year! I did qualify for the Ocrevus co-pay program and so far as I can tell, they will pay up to $20,000/year towards what my insurance won’t cover.
- Breast cancer risk. Of course, seeing some of the reports that malignancies are possible with this medication stopped me in my tracks. It is a big concern and I’m hoping that researchers address this risk and explore it in more detail. I’m trying not to focus too much on this but keeping it in the back of my mind. I will take all of the necessary precautions and make sure I am diligent on my annual mammograms, and even urge my primary care physician to monitor me with additional screening such as ultrasound.
- Weakened immune system. I was told to avoid prolonged exposure to sick people or places consisting of sick people, and that I could be more prone to infection. Again, not ideal, but something new that I will have to take into consideration more than I did previously.
Again, I’m not endorsing Ocrevus. Yes, I’m a big fan of DMTs but I truly believe that every person with multiple sclerosis needs to find what works best for them. This medication has now become part of my fight in combination with maintaining a healthy lifestyle. I’m trying to keep MS in check and to halt its progression as best I can. I can imagine that I will have to keep adapting, that there will be new hurdles or roadblocks in my future but I will cross those bridges when, and if, I have to. One thing that MS has taught me is adaptability and perseverance. I’m just starting on this path and have no idea yet if I’m on the correct one but if it doesn’t work for me, I know that I will forge ahead and discover a new one. I will continue to fight and I won’t give up - it's just what we warriors do!