Choosing a disease modifying drug (DMD) is an individual decision and it can be important to weigh up your options and think about what might work best for you. In this guest blog, Toni shares her experiences of choosing an MS treatment and explains what it was like to start on Plegridy.
My name is Toni and I am 46 years young. I experienced my first MS Symptoms in July 2010. I was diagnosed with mild RRMS (Relapsing Remitting MS) in 2014.
From 2010, I was told it could be MS, but at the time my diagnosis was being left as 'Clinical Isolated Syndrome' - a one-off incident so to speak. Even though I knew in my heart it was MS, the confirmed diagnosis of MS still hit me like a tonne of bricks. Although it was a relief to get a confirmed diagnosis, I saw my life pass me by in a huge MS flash, but how wrong was I!
I have been blogging my MS journey at https://www.facebook.com/msrollercoasterride for two and a half years, and love the connection I have made with my MS online family.
Time to start on a DMD...
February 2016. The letter arrived in the post from my neurologist regarding the outcome of my latest MRI scan. I always get nervous when I see the envelope from the hospital sitting on the door mat. I rip the envelope open, take a deep breath and read the contents of the letter. A few new small lesions have appeared, and one previous lesion has enlarged in size. From being a small lesion it is now the size of a British 5p coin. Due to this latest activity and a few relapses the previous year, it is now time to start a Disease Modifying Drug (DMD). Uh oh...
But, a lot has happened since I experienced my first MS symptoms in 2010. The numbness which spread down the left hand side of my head and face to the whole of my left arm disappeared after six months. Apart from some nasty fatigue which I couldn't seem to shift, I was feeling OK. I quit smoking, I stopped eating processed foods, I stopped drinking, and in 2011, I started to practice yoga and meditation. I was doing everything and anything I could think of to stop this disease in its tracks.
I had my follow up appointment with my neurologist and my MS nurse and we discussed a few different DMD's. Plegridy was mentioned by my neurologist, together with Copaxone and Avonex. I couldn't make up my mind there and then as everything was just a blur. I was handed a booklet explaining the different treatments and to go home, carry out some research on MS websites, to have a think, and to let my MS nurse know my choice of DMD. I did my research on the MS Trust Website - MS Decision Aid, and I decided to go with Plegridy. All the DMD's which were offered to me are for MS patients with RRMS. All three would halve my relapses by about 30%, more or less come with the same side effects, (flu-like symptoms and injection site reactions) but with a variation in weekly administrations. I decided to go with Plegridy. I chose Plegridy as it is injected under the skin once every two weeks, giving me a little breathing space in between injections!
The first injection
My first night to inject with Plegridy was a very apprehensive and emotional night. My boyfriend was sitting with me offering me emotional support. The injection stung a little, but the pain doesn't last long. I always inject on a Friday night, take a couple of pain killers to help with the side effects, then off to bed I go!.
I have now been injecting with Plegridy since April 2016, and it does get easier. My latest MRI scan in January this year showed no new lesions or activity in previous lesions from two years ago. For this reason I am happy to stay on Plegridy. If I wanted to switch treatments later down the line, I would have a chat with my MS nurse or neurologist for advice. But for now, as Plegridy is my friend and not my nemesis and keeping my lesions and relapses at bay, I'm happy to stick with it. (no pun intended)!
MS may have slowed my life down a little, but I feel Plegridy is helping me to switch gears every now and then, and to go full throttle when I need to!
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.