Exclusive Content

Sticking to It – MS Treatment Adherence Part 2

By Matt Cavallo

In part one of, Sticking to It – MS Treatment Adherence, we discussed my initial experience with disease-modifying therapies for multiple sclerosis. I had been on an injectable therapy for eighteen months but had broken through with two exacerbations in ten months. I was also experiencing significant side effects that were affecting my quality of life. As it turned out, I was allergic to that therapy and learned a valuable lesson about finding the right treatment that worked for me and my MS.

In becoming allergic to interferons, there were two options available to me. One was an everyday injectable that had been available for years. It was considered safe and was the preferred treatment of my neurologist for me. The second was a once a month infusion. This infusion showed great promise for MS, but had some potentially significant risks associated with it. During clinical trials, there were a couple of deaths. My neurologist didn’t feel comfortable with the risk associated with the IV option and strongly urged me to go with the everyday injectable.

I thought the opposite. MS had controlled my life for the past eighteen months. During that time, I had experience being paralyzed from the waist down, blind in my right eye and a cognitive loss like early onset Alzheimer’s. Although I had recovered from each of those exacerbations, I was afraid that if I didn’t take a risk and try newer treatment with more promise, my MS would progress and I would lose my quality of life and all the hopes and dreams I had of a career and family. I wasn’t going to allow that to happen.

I told my neurologist I wanted to go with the IV treatment. I told him that I was more afraid of the disease progressing than I was a potential side-effect of the treatment. I told him that my goals in life were to work and raise a family.

He told me no.

I was shocked. I wasn’t prepared for a rejection from my doctor. I also wasn’t going to accept it either. I thanked him for his opinion and told him that I was in charge of what I put in my body and that I was going to seek a second opinion. I started making phone calls and found a neurologist who thought I was the perfect candidate for the new treatment. I went to see her for a visit, got enrolled in the program and started my treatment.

Once I started my new treatment, I became exacerbation free. My MRIs also showed no evidence of disease progression. I felt like I finally had gotten my life back and was in control of my MS. I felt empowered that I had advocated for myself and fought for what I knew was right for me.  

By following my new treatment plan, I achieved my goals for therapy. I became a father and was living the life that I had always dreamed. From that point on, I knew that I was in the driver’s seat when I came to my health. While adhering to your neurologist’s care plan is critical, it is equally important to find the treatment plan that is right for you. There is also nothing wrong with seeking a second opinion. A second opinion will either validate your current physician’s plan of care or give you an alternative. 

Maybe you are starting your DMT journey with MS. Maybe you are trying to select the DMT that is right for you. The best thing you can do is communicate the goals you have for therapy with your neurologist. Today, there are many more options available than when I was diagnosed, and your neurologist can provide you a personalized plan of care. 

It is also up to you to communicate any signs and symptoms that you experience from therapy. Also, it is critical to follow the plan as ordered. If you don’t take your therapy as ordered or discontinue it because you are starting to feel better, then you are putting yourself at risk for an exacerbation. If you are not achieving your goals by taking your DMT as ordered, talk your neurologist. Remember, your voice is critical to becoming a partner with your neurologist in the long-term management of your MS. Together, you can accomplish your goals.