On Rituxan for Eleven Years, and My MS Is Doing Great!
I’m such a rebel. LOL. That’s definitely NOT how anybody would describe me. But there was a time in 2009 that I moved out of the normal MS disease-modifying therapy zone and opted to try something non-traditional. Now, I’ve completed my 42nd infusion of Rituxan and am glad that I chose the unfamiliar route.
When MS takes a turn for the worse
My MS was becoming much more active, and I was experiencing relapse after relapse. My physical abilities were deteriorating, and I had new symptoms showing up. It was only 4 years since my official diagnosis, so I was very concerned that things would be getting bad so quickly.
Choosing an unapproved therapy
I did a lot of reading and research to see what the options were for treating my MS. At the time, only 5 disease-modifying therapies were approved for MS, and one of those was only used in really bad cases of worsening MS.
I found studies about early research of a newer therapeutic approach that showed promise in MS. It was the anti-CD20+ B-lymphocyte monoclonal antibody therapy called rituximab that was used to treat non-Hodgkins lymphoma and rheumatoid arthritis at the time.1
I wanted to give the treatment a try and brought the research to my doctors. Together, my rheumatologist and neurologist thought that it would be a good idea to try rituximab.
What was once cutting edge is now commonplace
Now, 11 years later, using Rituxan (rituximab) in the treatment for MS is commonplace. We even have the closely related anti-CD20+ B-lymphocyte therapy called Ocrevus which is officially approved for MS. There are two additional anti-CD20 therapies under investigation for MS including ofatumumab and ublituximab.2
Questions I’m frequently asked
Many people are curious to know how I’ve done on Rituxan after all these years. Early on, I didn’t talk about it so much because it seemed risky to discuss an off-label use of medication. However, it was approved for rheumatoid arthritis, which I also have, so it was not technically an off-label drug for me.
FAQ: Do you have any side effects from Rituxan?
Yes and no. During several of my early infusions, I experienced infusion-related reactions that required medical intervention. Basically, I had symptoms such as itchiness, scratchy throat, coughing, swollen tongue, and flushing. To treat these side effects, we had to stop the infusion, administer more steroids and benadryl, wait for side effects to go away, then try to start the infusion again at a slower speed. Nowadays, I just start with extra pre-meds and use a slower rate of infusion for the entire time (rather than titrating the infusion rate to a faster speed every 30 minutes which is how it’s normally done). I haven’t had an infusion-related reaction in years!
In the days after each infusion, I am usually extra tired and fatigued. I plan to take it easy and not overtax myself and give my body time to recover. The steroids might keep me awake the first night, but sleepiness usually sinks in during the following afternoon.
FAQ: How has your MS done on Rituxan?
I am fortunate. MS disease-modifying therapies are not supposed to make you better. They are just supposed to slow down your disease progression. But it seems like Rituxan has slowed down my disease and allowed my body to repair some of the previous damage I had accumulated during the early years. I still experience symptoms every day, but nothing new has come up that I haven’t experienced before.
I also haven’t experienced any new lesions since starting Rituxan. In fact, some of my lesions have shrunk and others have healed (or disappeared).
FAQ: Do you still have relapses?
I have had two major relapses in the past decade. One in November 2011 which affected my strength and my ability to walk well. And one in February 2016 which also affected muscle strength, as well as sensory changes, and coordination. This was a significantly reduced rate of relapse considering I had 3 relapses in the first 8 months of 2009 and was on pulse steroids in 2010 because of continued disease activity.
Rituxan did not have an immediate effect on my MS, but over time, it has made a HUGE positive impact on my MS. It has basically stopped my MS from progressing and has allowed my body to heal some of the previous neurological damage. Keep in mind, however, that I still experience symptoms
FAQ: Have you lost hair?
No. After each infusion, I have noticed what I would describe as hair shedding. I might get more loose hairs on my brush or hands, but I also notice a lot of baby hairs growing in. I think the mild hair shedding is related to the steroid use rather than Rituxan.
FAQ: Does your doctor test your blood before every infusion?
The goal of Rituxan is to keep CD20+ B-cells at zero, but neither my neurologist nor my rheumatologist tests my B-lymphocytes before treatment. This makes sense, however, because we don’t wait until these cells begin to return before retreating.
Your experience may differ
Taking a chance on a medication that wasn’t commonly used to treat MS was one of the best decisions I’ve made on this MS journey. My quality of life is better than it was 11 years ago, and I’m out bicycling on a regular basis. I can deal with continuing symptoms that are like old friends now. The ups-and-downs are more predictable and tend to happen most with overheating or exhaustion.
Having finished my 21st full round of Rituxan infusions, I feel a bit like a seasoned MS warrior. I want people to know that MS can and sometimes does get better. The body is always trying to repair itself. Sometimes it just needs a little help.
How many specialists did you see before finding "The One"?