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Closing the Loop on My Oral MS Therapy Journey

By Matt Cavallo

Those who have read my articles over the years know I don’t talk about the multiple sclerosis therapy that I am on. The reason is because I don’t want to influence your MS therapy decision. I believe the MS therapy you choose should be as a result of a conversation with your neurologist and not based on something you read on the internet. I can share my personal experience, but each of us has a different experience, so what works for me, may not work for you and vice versa. This is the reason why I try to steer clear of naming names when it comes to my MS therapy. 

This article is no different. I won’t name names. However, I have just concluded a year of MS oral therapies and I wanted to close the loop on my experience. I have also previously written articles on needle fatigue, and my decision to switch to an oral medication, so I thought it would be a good time to follow up on my experience. 

As a bit of a background, I have had MS since 2006. Here is my MS treatment history:
  • Once a week interferon shots (approximately one year until I became allergic to them, which is a story for another day).
  • Once a month infusions for about nine years
  • Twice a year infusions for about six years
  • Oral pills for exactly one year

As you can see, I have a lot of experience on MS therapies dating back to my diagnosis in the summer of 2005. As a matter of fact, since I have been diagnosed, I have not stopped MS treatment, except when my health insurance at the time delayed my medication authorization and forced a relapse

From experience, I can speak about what it is like having to do at-home injections. Spoiler alert, I was never able to inject myself, my wife had to do it. I can also tell you what it is like to get an infusion and have written articles on infusion tips. However, I was always reluctant to switch to an oral medicine because I was afraid that I would forget to take it. I liked the scheduling component of the infusion therapies because the scheduling was taken care of for me, I received reminders, and all I needed to do was show up. Easy peasy. 

Now, I am at a crossroads because the oral MS therapy I chose is only prescribed for one year. I took two cycles of the medication the first and second month and then two more cycles of the medication the following year. Now that I have completed all of the cycles, I am done with the treatment. I chose this treatment because I was having needle fatigue from all the previous injection and infusion therapies. I also chose it because my neurologist informed me that in a 10-year clinical trial, 60 percent of the participants did not require another treatment. 

I found it helpful that the pharmaceutical company sent me text reminders that it was time to take my pill, which alleviated my fear of forgetting to take it. There were also a couple of labs that I needed to do, so I didn’t ditch the needle completely. I also had one little symptom flare, but it was more of a pseudo-exacerbation. I had an MS hug for a month or two, but it didn’t affect my daily living. Other than that, there were no side effects from the medication and I feel great. Most importantly, my latest MRI showed no new disease progression. 

While this all sounds good, deep down I’m scared. For the first time since being diagnosed with MS, I have no treatment plan. I have one lab draw left. Once that is done, it is just wait and see. While that is a little scary, I have a renewed sense of freedom. For the first time since 2005, I don’t have to figure out how to fit my MS treatment into my schedule and I don’t have to worry about insurance. 

There is nothing left for me to do except monitor my health and communicate any concerns to my care team. I am hoping to be in that 60 percent that never needs another MS treatment, however, if I am in that 40 percent, I will be ready to talk to my doctor about a new therapy plan to manage my MS. It is always exciting to turn the page and start the next chapter. Stay tuned.