Medication and MS

In this week’s MS & Me blog, Niamh takes a look at why she decided to go on medication to manage her MS. 

In reality, it wasn’t a deeply-considered decision that I made. The option to not take any medication wasn’t really presented to me. I was under the impression from my neurologist and GP that taking medication was the best way to manage my symptoms. I figured those guys had more experience than I had, and as they were keen to get me up and running on some form of treatment, I went with their advice.

Deciding on which medication is difficult. Let’s face it, not many of us have a medical dictionary to hand most of the time, and I was given a lot of information and bumf about the choices available to me. The information came on DVDs, in booklet and leaflets, and I was advised to “have a read over that, and let us know which one you want to go for”. Now, there was probably a bit more to it than that, but in those first few days I was busy trying to get my head around the fact I even had MS, never mind trying to learn the difference between beta interferons, infusions and Glatiramer acetates. Heck, I still don’t know the difference- I’ve just had to read the box from my injections to check the spellings!

Looking back, I am not sure if this approach worked for me. I didn’t ask many questions, mainly because I didn’t know what I should be asking, and I think I would have benefitted from a bit more time chatting to someone who knew the ins and outs of all the different types of drugs. I loaded up my bag with all the bits and pieces and trotted home to try to decipher them. I think that a second appointment, akin to a counselling session, would be helpful to go through things again and to make sure patients know the options fully.

I did my best to get through the literature, and to decide on a medication. I admit, my choice was based a lot on the number of injections I’d need to take a week. I figured that with my limited medical knowledge, this was as good a reason as any to pick one!

I didn’t get bogged down in what the drugs actually contained- I just wanted to take something easily and for it to stop me getting sicker. This tends to be the way I approach most things- I don’t really question a lot of the whys and wherefores, I depend on the professionals to do that.  

However, as time has gone on I’ve started taking more responsibility in researching how to manage my MS best for me. Diet and exercise plays a big role in that, but I’ve never considered not taking the medication as well. I see it as, the medication is my main defence and whatever else I can do to help it, is a bonus.

Settling on a medication took a while. I started on Rebif first, but it wasn’t for me. The side effects were hard on me and I ended up having an allergic reaction. I then moved on to Copaxone, which was a daily injection, but I’ve recently changed to the 3-times a week dosage. People wince when I tell them that I inject daily, but most days I don’t even feel it. It becomes routine, and is like cleaning my teeth. 

I am managing well on Copaxone, and have no plans to change to another drug. If my neurologist recommended a change, I’d definitely consider his advice carefully, but nowadays I think I’d spend more time doing some research myself, and ask a few more questions.