I was diagnosed with relapsing remitting MS at the age of 21, almost three years ago now. Before my diagnosis I had no idea that there was medication available for people with MS, so it came as a surprise to me when I was offered the opportunity to make a decision on which type of medication I wanted to take.
I had an appointment with my MS nurse and she talked me through the different kinds of medication available, the side effects and the methods of taking them. The meds I was offered were all injectable – eek! The concept of having to inject myself was daunting and something I was initially struggling to get my head around.
I left the appointment feeling pretty overwhelmed at the amount of information I was given but the nurse had advised me to sit down and consider the things that were important to me and how it would impact on my life. I took time to consider the side effects; mainly how they would affect my day to day life trying to continue working a full time job, if there would be any effects on my fertility (being 21 at the time it wasn’t the first thing on my mind but it would be important to think about for my future) and the long term effect it would have on my health.
I spoke to my partner and family who were all really supportive, and we weighed up the benefits of what the medication could do. I decided that trying to prolong how long I could be relapse-free for outweighed the needles and side effects. I chose to start injecting Rebif; I only had to inject three times a week, my injection sites were the parts of me that held the most fat (my tummy, thighs, tops of my arms and bottom so it wouldn’t be too painful), the side effects seemed to be things I would be able to cope with. I had researched and read blogs from other people who were taking Rebif and been relapse-free for a while (some even for a couple of years).
Injecting really wasn’t as bad as I had first thought. The needles are so small you barely feel anything and the machine I was given was an auto-injector so just one click of a button and the injection was administered by the machine.
Some medication works for some and not for others and unfortunately Rebif was not for me. I suffered flu-like symptoms which began to impact on my day to day life. I was having to rely on paracetamol to stop the shivers and aches from waking me at night and to stop me feeling unwell during the day. My injection sites would be red and sore for days which they believed to be a skin reaction.
I persevered in the hope that the side effects would gradually get easier, which they do for most, but for me they didn’t and after around a year I had to give in and say enough is enough. I spoke to my neurologist and MS nurse who agreed that perhaps it would be best to try different medication.
I was offered Gilenya as an alternative, or fingolimod as it is otherwise called (I choose to call it Gilenya whenever anyone asks to avoid sniggering at the word fingolimod), a tablet that I could take once a day. The side effects did seem to be a bit scarier and it would weaken my immune system making me more susceptible to picking up common coughs and colds. The first dose would have to be administered in hospital to monitor my heart rate but I was happy to try anything to ultimately help me continue to live a normal, comfortable life.
Luckily for me, it’s a year later and Gilenya seems to have worked. It has kept my relapses at bay so far (fingers crossed) and the side effects have been next to none. I have ‘niggles’ from time to time: a tremor in my left arm, a blur in my right eye and the occasional numbness and weakness but these things are easy to live with and could be a lot worse.
If I could give anyone facing these decisions some advice, I would tell them to talk to their MS nurse. They want what is best for you and can give you advice on which medication would be best suited to you and your lifestyle. They are there to answer questions and help alleviate your worries.
Don't rush into anything, take time to weigh up the pros and cons and don’t ever feel like you are alone, there are people who can and want to help. It’s important to talk to your family, keep them in the loop as to how you’re feeling; they’re the people who love you the most and can give you endless support.