Starting and Switching DMTs: Expectations vs Reality

“OK, how am I going to treat this?” That was the second question I asked myself after learning I might have multiple sclerosis (MS). The first one being, “Huh? Where the goofballs did that come from?” I had gone from a person following up on a severe nosebleed, to a person living with MS (PLwMS) in roughly 2 1/2 hours, so the bewilderment was magnified.

Where do I start?

Once my diagnosis was confirmed, my next step would be deciding on a treatment plan. I wanted to combat this disease as soon as possible. I felt fortunate to have been diagnosed at a time when there was more information available to me. I decided that in my specific case, a disease modifying therapy (DMT) was the preferred course of action. Reading and research is totally my bag, so I was armed and ready. I knew what to expect. My neurologist was careful to manage my expectations. I understood that I should look forward to stopping the progression of MS.

Look it up

I consumed material until my eyes were exhausted and my brain was foggy. I was no different than any other PLwMS when it came to choosing at DMT. The efficacy and safety of the medication was at the top of my list. Both had equal standing. After that, it was all about personal preferences that affected my quality of life. I could choose between medication options that included injectables, orals, and infusions.

Deciding on a DMT - My first choice

My first chosen DMT was a tablet taken orally twice a day. I had to titrate on and build up to twice a day. This is where I began to build expectations around my chosen DMT. What I thought would happen was based solidly on the literature. The answers were clearly available in all of the small print - on both sides of the insert. It seemed that any and everything that could be uncomfortable, would be a side effect. My expectations did not materialize out of thin air. They were not magic quarters produced by an experienced sleight of hand. I primarily expected to be nauseous, achy, fatigued, and mentally unclear. Pretty much like I already felt after trying to get ready.

Keeping symptoms in mind

I kept reminding myself about the negative side effects of my DMT, and each day that I took my new meds, I expected to feel the worst of it. I believed knowledge would indeed be power. It allowed me to calm any anxieties that I might have had about the medication itself. When I did feel unwell in any way, I felt that I could rely on the information I had amassed. Two months into my oral DMT, I had a break. My prescription had a mixup and I was off of it for nearly 2 weeks. Once everything was sorted out, I got back on it.

It did not take too long for me to settle into my medication routine. With each dose, I believed I was slowing progression and protecting my brain from new lesions, plus protecting the myelin sheath from further damage. That was quite the tall order, but exactly what was outlined in the literature. It did not imply in any way that my symptoms might be alleviated, yet I still tried to imagined that there were some benefits. I allowed myself to feel hopeful that I my choices would pay off in the end.

High hopes and reality

Managing expectations is an important skill when you are a PLwMS. We get used to the highs and lows and middles that come with a chronic illness. I have no plans of running around like the village jester. I will not trumpet every new study or article as a heavenly revelation that is sure to make everything perfect. I am not looking for a land of milk and honey when it comes to MS. I like to have my feet planted firmly in the ground, even while my hopes stretch skyward. It was a good thing that I had the earth under me.

My first DMT, the oral one, failed me. While under its usage for one year, progression did not stop. I felt a mixture of emotions. I was sad, disappointed, scared, angry, confused, defeated, and empty. I also felt stupid for being so hopeful. I chastised myself over and over until I realized that it was a waste of time. The DMT did not work for me and I had to start the process of choosing a new DMT all over again.

My DMT switch

I took the lessons I learned choosing my first DMT into this new situation. I, again, was educating myself as much as humanly possible. Again, I was attempting to make the best possible decision under the same circumstances. I was arming myself with as much clinical literature about this new option as I could. My additional exploration included using reliable sources on the internet, including MS organizations and published research. All of it helped to me to understand the benefits and risks in a very clear-eyed way. I had the same set of expectations as I had had on my first DMT.

When it came time to start my new DMT, I felt as prepared as I could be. It would have been easy to be disillusioned by my first experience. However, I grasped the notion that this was not a one-size-fits-all chronic illness. My first fit was not right. I had the privilege of other medications from which to chose. For those who have gone through this process more than twice, my attitude is a heavy lift and I certainly do not want anyone to come away with the sense that these are carefree, easy decisions. They are not and it can take a toll on a PLwMS.

Get to the point, Ma’am

You never know what you will experience once you start a new DMT. The choices may seem, and feel, overwhelming. Feeling powerlessness is not uncommon. Yet, in the midst of this, you can take some control. The main power that you have is to ask questions and read as much as possible. It is to locate, as best as possible, the relevant and trusted resources that can assist you with decision making. Once you do this, your reality can more closely match your expectations.