I was a bit late to board the DMT (Disease Modifying Therapy) train. Although I had experienced symptoms of MS since my early twenties, I did not actually get diagnosed until I was 36. About six months later, I signed up for a clinical trial. For a few years, I was not actually sure which medication/DMT I was on because it was a double-blinded trial. This means that neither I nor my doctor knew which of the two drugs I was taking was the placebo (dummy) and which one was active. I found the whole process of participating in a clinical trial fascinating and it inspired me to want to learn more about how medications are developed and monitored.
While I was on the clinical trial, I experienced severe side effects. I felt like I was losing a day a week to “flu-like” symptoms. Can you imagine having the flu for one seventh of your life? That’s ten years of feeling dreadful if I reached the average life expectancy! I began to weigh up the advantages of taking medication for my MS at all. How did I know it was working? Were the “flu-like” symptoms worth not having relapses? I also felt terribly guilty about not being able to do my daily tasks like caring for my children or not being productive at work when I was experiencing the dreaded “flu-like” symptoms.
I don’t regret taking part in the clinical trial. I feel it gave me a bit of time to get over the shock of my MS diagnosis and to get a clear picture of what treatment options were available to me. I also felt that I was contributing, in my own way, towards the process of getting new medication on the market for people living with MS. I learned what a Disease Modifying Therapy meant. DMTs are NOT a cure for MS but could reduce how many relapses I had and their severity. DMTs can also slow down the damage caused by relapsing MS that builds up over time.
Because I did not respond well to the first DMT I took, I was then moved onto a second line therapy. I had to have a ‘wash-out’ period where the old medication left my system. During this time, I had my first major relapse. I guess I had the answer to the question about the “flu-like” symptoms being worth it.
Choosing my next DMT was difficult and I would encourage anyone considering starting or changing, to do their homework and investigate which one would suit you and your lifestyle best. Don’t let yourself be rushed into a decision. At the end of the day it’s your health you are deciding about. How long would you take to choose a new car?
I have much less side effects on the second DMT I tried. I know it’s working because I have no evidence of disease activity in my annual MRI. I make sure to read my patient information leaflet and get my bloods checked regularly to monitor how my liver is functioning. When considering a DMT it is vital to get your facts from a trusted source and make an informed decision with your neurologist.