SELECTING A TREATMENT
I attempted to prepare myself for the diagnosis, to no avail. My focus had been so tightly honed in on the final conclusion of my diagnosis, that the choices that immediately accompanied it quickly overwhelmed me.
Injections, Infusions, Orals, Trials, Class X, 20 or 40mg, Steroids,… all terms I would have gladly referenced an MS 101 glossary in order to navigate with knowledge. I had to learn unfamiliar terminology, new classifications, and determine my treatment plan based on a few pamphlets and a strongly urged suggestion from Dr. V.
I learned that the right doctor(s), comes with a great care team. Pharmacists for direction and treat-ability. Nurses for follow up questions, Insurance & medication management support, therapy referrals, and endless resources just a click away through a patient portal. All things I know are not a guarantee, but I welcomed in my quest for the answer of how to choose the best treatment FOR ME.
Treatment selection is so personal. More personal than I ever imagined.
Do you trust your Doctor / Care Team?
Do you want to have children? When?
How progressive / aggressive is it?
Are you comfortable with needles?
Do you want to ‘baby step’ it or barrel in head on, no holding back in the 1st treatment?
Are you interested in double-blind Clinical Trials?
How often do you want to track your meds? Daily? Weekly? Monthly?
How far are you willing / able to travel and how often?
How much can you afford? What is covered by insurance vs. out-of-pocket?
My answers to these questions felt simple, but their meaning and impact was deeper than I expected. Navigating a new set of “what-ifs” felt I was wrestling with fait. Lucky for me, my personal support team had experience with MS. Family and Friends with the disease. Aunts & Uncles with background in the treatments with knowledge and expertise in the functionality and alternatives. All willing to offer opinions when I asked. Each with a perspective and insights into the options.
Whether you have 3 options or 6 options. Choosing a treatment is about balancing the noise with your reality. Ask and Answer some simple questions to establish your comfort levels. Then layer in the complexity of the wide variety of types, cadences, and side-effects. Remove the outliers from the contenders, and narrow it down to 1-2 clear preferences. Once you get to that point, if you’re unable to make a final decisions, leave it up to the experts. Allow your MD care team to provide final direction. Google is helpful. Chat groups are amazing. Gut feel, worth listening to. Just so long as you are comfortable and secure.
You deserve to be in the drivers seat of your medical journey. Where, when, what, how often, cost, and side-effects cannot be underestimated. Be willing to push yourself and others to get the answers. Decide that you’re in control and this may be just the beginning of the choices you’ll have to make.
You may be on a given treatment for days, weeks, or even years. It could be the right fit, or your body may reject it. I have come to realize that the journey of treating a chronic illness is more of an endless labyrinth made up of winding cross-roads built from risks, rewards, and unknowns, than it is a rollercoaster. A roller coaster would assume it is directional and has a destination to achieve. The labyrinth would suggest it is a dynamic, ever changing, blending of challenges and opportunities.
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I selected an injectable option. A self-administered shot every-other day. Semi-disruptive and annoying - shots every 48hrs, must keep refrigerated, & monthly deliveries by a specialty pharmacy. But still it felt approachable, came highly recommended, and was toted as easily tolerated. As with anything, there were learning curves. One injection too deep, the next on too shallow. Side-effects: uncomfortable and annoying but easily dismissed. However, the drug I chose has an entire suite of tools, resources, and service support. Rather than confused, and frustrated, I felt equipped and empowered to take on my treatments.
It’s personal. It’s a choice. You’re in the drivers seat. Buckle Up.
Charlotte Raejole