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Sticking to It – MS Treatment Adherence Part 1

By Matt Cavallo
pen-injector-(1).jpgWhether you are newly diagnosed with multiple sclerosis or thinking about switching disease-modifying therapies, there is good news. Today there are many DMT options available, so you and your neurologist can find the treatment option that works for you. 

There is no cure for MS. However, there are proven effective treatments that help slow the progression of the disease. When starting out on a disease-modifying therapy, it is important to set therapy goals. 

When I was first diagnosed, there were not many options available. In this two-part series, I am going to share a personal journey of my treatment decisions. In part one, we are going to focus on my initial DMT and part two will focus on switching therapy.

My goal with DMTs is to minimize the number of exacerbations, or new MS disease activity, that I experience. Adhering to the neurologist plan of care and taking the treatment as ordered is the best way to see if a DMT will help you reach your therapy goals.

For me, the first DMT I tried didn’t help me reach my therapy goals. At the time, there were only four DMT options available for MS and all were injectable. I had a tremendous fear of injecting myself and a hesitancy to go on any of these treatments as a result. My neurologist provided me information on the four DMTs at the time and we went with the one that offered the lowest frequency of injections.

The on-boarding process was warm and welcoming. The pharmaceutical company sent me a welcome kit with instructions and information on what to expect, along with a needle disposal kit and my first month’s dosage. The treatment arrived in a plastic foam box enclosed in dry ice, so when I opened the box the dry ice fog rose out of the box like a science project in school. 

The pharmaceutical company sent a nurse to train me how to inject myself. My wife was with me for the training. The nurse had me practice injecting on an orange. However, when it was time to inject myself, I couldn’t bring myself to do it. No matter how I tried, I couldn’t go through with it. Eventually my wife stepped in and learned how to do it. 

For the next 18 months, my wife did my weekly injections. We made a ritual of it. We picked the same night each week, same time, and established a routine that worked for us. Even though we had the routine down, the treatment wasn’t achieving my goals. While on treatment, I had two major exacerbations within 10 months. I was also experiencing side effects that could last days after the treatment.

During the night of the treatment, I would get an extreme fever which caused me to shake uncontrollably in my sleep. The feelings of the fever would last a couple of days. Just when I was starting to feel normal, I would have to do my shot again. This process was repeated every week. 

Even though I was feeling sick, I felt like I was doing my best to fight the MS. I would have gladly traded my disease progression for flu-like symptoms. However, in the end, my side-effects got worse. I started to get hives and chest pains. It was these reactions that finally got me to talk to my neurologist. 

My neurologist was extremely concerned and ran a simple blood test.  The blood test showed that I had built antibodies and was now allergic to the treatment. He said that I could have gone into anaphylactic shock had I continued the injections.

I was stunned by the news. Here I was thinking that I had been following the plan and helping fight my MS, but in all reality, by following the plan, I was hurting myself in other, potentially devastating ways. It was at this very moment that I realized how critical communication with my neurologist was, along with carefully monitoring my body’s reaction to any treatment. I also realized that I was no longer going to be able to continue my same treatment.

Eighteen months after starting my MS treatment, I was back at square one. I was now allergic to interferons, so three of the available treatments were no longer options for me. A new treatment was approved for MS that was showing great promise, but it also had significant risk. Because of this, I had to go through the evaluation process all over again.

In part two, we will explore my journey with my second treatment and how I learned to be an advocate for my healthcare and an active partner in deciding on my treatment plan.