My decision to switch medications

Published February 08, 2017

PLEASE NOTE: I am not endorsing or recommending any one disease modifying therapy over another. I believe that the decision to medicate or not is a very personal choice and everyone has to find their own strategies that work the best for their health, lifestyle, and beliefs.

In May 2015, after about 12 years of taking injectable medications, I finally decided to switch and try an oral medication. At first, I wasn’t so sure about making that change. Then, once I realized that my body responded well to this new therapy, I was practically screaming from the rooftops that “I’M ON THE PILL!” I received a few strange looks and responses, of course, but I was telling anyone who would stand still long enough to listen: my friends, family, co-workers, the mailman, random people on the street… OK, I may be exaggerating a bit here but I don’t think people realized the importance of this declaration for me, and for that matter, for the entire multiple sclerosis population. The advances in treatment options are amazing to me and offer such hope for the future of multiple sclerosis!

Oral medications have been approved for several years now and are not necessarily news. However, to me, this was earth-shattering! When I was diagnosed with MS in 2003, there were only four medications that were approved on the U.S. market for “treating” multiple sclerosis, and all were injectable medications. I use “treating” because these disease-modifying therapies aren’t curing MS, more like keeping it at arm’s length for as long as possible.

Now don’t get me wrong, I have nothing against the injectable medications. I did have considerable success with them and it actually became a really difficult decision for me to give them up. Since the time of my diagnosis, I had been on two different injectable medications, and I accepted the lumps, bumps, bruises and side effects because these shots were part of my fight. They were empowering me over a disease that can make one feel so out of control and so powerless. While on these injectable medications, I don’t think my MS worsened. I had few exacerbations and in fact, I feel that I improved my overall health and well-being during that time.

However, as much as I felt that these medications were helping, in all truth, I was starting to suffer from “injection fatigue” ─ as if living with MS didn’t fatigue me enough. Taking these shots started to become more of an arduous process for me mentally – one that I started to really dread. I started to resent the entire process of taking the shot; it slowed me down from my busy life and was morphing into more of a nasty reminder that I’m living with this thing called MS. The whole process of taking a shot would loom over me all day and once I got to the point when I was ready to inject, I would often sit there with the auto-injector to my skin working up the courage and psyching myself up to push the button.

So you would think that I would have jumped at the chance to go on an oral medication, right? The funny thing is that when it was suggested to me by the nurse practitioner at the MS clinic that I could try going on one of the oral medications, I was very reluctant. To tell you the truth, it actually worried me to give up these shots. They had become such a part of my routine, albeit dysfunctional, but they were also helping me fight against MS. Even though I hated the injections, I knew that, for myself, I had to take them. I viewed these medications as one of the tools helping me to live an active and productive life, and to do so for as long as possible. I was kind of in a love-hate relationship with the injectable medications.

And to add even further to my reluctance and indecision, my family and friends expressed concern. They worried that my health would decline, that I would suffer some horrible side effect, or even worse get progressive multifocal leukoencephalopathy (PML), an extremely rare and serious brain infection that is sometimes fatal. All factors, as remote as they were, had to be considered. The prevailing thought was that I was doing so well so why mess with it? If it’s not broken, why fix it, right?

I’m not sure if it is the nature of the beast living with MS ─ the not knowing your prognosis and sometimes feeling like you have no control ─ but I feared the change as well. Here was yet another change to my life with even more unknowns. What if this pill didn’t work for me? What if it did cause serious side effects and my health declined?

After much internal debate, research, discussion with my healthcare provider, and close to two years of contemplation, I finally decided that it was time to take that leap of faith. I figured the possible benefits outweighed the risks. Perhaps taking a pill once a day would improve my quality of life even more, and if needed, I could always turn back to my “security blanket,” the injections.

Well, I’ve now been taking this oral medication since May 2015 and so far, so good. I pop a pill every morning with pure elation and excitement! No lingering anxiety over “shot night” and no residual side effects. For now, I couldn’t be happier with the ease of administration and the release of what had become more of a mental obstacle than it needed to be. And unlike the injectables, I’ve never missed or skipped a dose. I'm not sure if this will work in the long run but for now, it is working for me.

There are currently over a dozen disease modifying therapies on the U.S. market for multiple sclerosis – with new medications on the radar to be approved soon. There is still no cure but I am confident with all of the strides made in the past few decades that there will be a cure in my lifetime. Multiple sclerosis is definitely not the disease it used to be.

I know medication is not for everyone and some choose to fight their illness with alternative therapies, special diet, vitamins, exercise, or any combination of things. I’m not advocating for one medicine, or one treatment option, over another. I’m advocating for my fellow MS warriors. Everyone living with MS needs to hold on to hope, to keep trying to do their best every day, to listen to their bodies, and most importantly, to find whatever works the best for them to live the best possible life with MS. Never stop trying to find what works best for you and never give up!