The decision to take medication, or not, is that of the individual person with MS. I’ll share my experiences below, but I really recommend that you talk to your own medical team before you make any decisions.
The Early Days …
When I got diagnosed in 2010, I was given a lot of literature to take home, to read up on my medication choices. It was so overwhelming, trying to make sense of long technical sounding words, never mind trying to pronounce the name of the drug itself! My decision making boiled down to “how many times do you want to inject yourself per week?” – I know that sounds flippant, but looking back now, I don’t think I had the mental head space to understand how everything worked.
If I had my time again, I think I’d have taken a bit more time before jumping head first into treatment. Don’t get me wrong - for me, being on medication is absolutely the right choice, I have no doubts about that.
BUT - in those first few weeks, I was getting over a huge relapse, I had just been diagnosed, it was a really hot summer, and my brain was mush. I know now, in the grand scheme of things, it wouldn’t have made a difference if I’d decided to wait a few weeks until I felt better, before deciding what to do next.
Nine years on, I am on to my third disease modifying drug (DMD). I started out on Rebif which didn’t agree with me, so I only took it for a few months. I was on Copaxone for years after that – first on the daily injections, and then on the 3-times per week shot. I got on well on Copaxone until around this time last year. I found it was taking longer for my injection sites to recover between injections, and even though I have plenty of tum and bum to cover, I was running out of space! It started to get me down a bit too, as the injections I had never really minded, began to become a chore.
Last October, I had my MS Clinic appointment and spoke to them about how I was feeling. We decided that I could try Tecfidera – an oral DMD – and see how I found it. Of course, starting any new drug is a big decision, but I felt I couldn’t continue as I was. I am about 8 months into Tecfidera now, and apart from the occasional tomato-red hot flush, I am getting on fine. The convenience of carrying a few tablets in my bag is still a novelty, compared to the years carrying a cool pack and a sharps bin!
The Future …
MS medications have changed a lot over the last decade – when I started out on treatment, there was no oral option available to me, but now there are a few that can be prescribed, as well as infusions and other therapies. The research into treatments and development of DMDs is so important. I love imagining that there is a researcher who is right now working on a drug that in a few years will stop MS in its tracks altogether. That will be amazing.
@weeneevie (Twitter and Instagram)