Thursday March 15 2018 11:00 AM
Where do you get your MS treatment information? This week in her first blog as part of the renewed MS and Me writing team, Joan Jordan tackles medication, DMTs, clinical trials and decision-making. Read on for a clear description of how Joan made her DMT decisions….
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.