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Choosing my disease modifying drug

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Being diagnosed with MS in 2012 came as a bit of a shock  ̵  I had not felt well for a while, but genuinely thought the issues with my eyes (which triggered the visit to my doctor) would turn out to be some sort of eye strain. Yet, after the diagnosis several relapses followed, and it wasn't that long afterwards that I was informed that I qualified for a disease modifying drug.

I visited my consultant who simply handed me a piece of paper, saying that I could go on the MS Decisions website, choose which drug I wanted, and let them know my decision. As a member of NHS staff (albeit in a different area), this slightly confused me as I was accustomed to a consultant taking a more advisory role when choosing treatment. I asked him whether he could recommend any of them, to which he replied that they all reduced relapses to a similar percentage, and it was my preference.

I went home, logged on, and looked at all the options. At this stage all the options were injectable and no oral medication was available. I immediately I thought that the idea of injecting myself daily did not appeal, but then I was confused about whether I wanted to inject into muscle or subcutaneous tissue, and how I would manage to do this myself.

Slightly baffled, and overwhelmed with such an important decision, I rang my MS nurse and asked whether he had any advice. Immediately he filled me with a sense of calm, suggesting that we should meet for a coffee and go through things together in an informal setting.

We met at a local coffee shop and my nurse confirmed that all of the drugs were similar in their effectiveness at managing the disease. We looked at all the options and how they might impact on my day to day activity. Although I had initially dismissed the idea of daily injections, I had not looked at closely at the side effects associated with the drugs. As I was keen to maintain my job and social life, I wanted any impact from my medication to be minimal.

A couple of cups of coffee later, and after a lot of chatting I decided that I would start with Copaxone (glatiramer acetate). Despite this being a daily injection, the side effects were localised to the area I placed the injection rather than possible flu-like symptoms which many of the others had as a likely side effect. My MS nurse gave me the time, confidence, understanding and empowerment to make the decision for myself.

I admit the injections at the start were quite painful as my body was not accustomed to the drug within my system and sometimes left some strange red marking around the area. However, now I barely notice it, and have very little surface reaction. I have an injector pen (although I have been trained to inject without, should I need to) and use several injection spots around my body, which I rotate daily so as not to keep injecting the same spot.

I have integrated my injections into my daily routine, removing the injection out of the fridge the night before and injecting myself in the morning just after I have had a shower (as I have found any reaction to be lessened after having a shower). The injections are delivered to my house on a monthly basis and I don't even have to pick them up from the GP.

People often ask me whether they think that the injections are working. This is a very difficult question to answer, as I cannot compare with how I might be without taking them. All I do know is that I am able to manage the injections in my day to day routine with little disruption to my life, and whilst I am taking them I have the knowledge that they help to reduce relapses by a third.

Facing the decision to choose a disease modifying drug

I think anybody else facing this decision needs to look at what is important for them. Don't necessarily be put off by injections if the side effects could impact on your life more. Conversely, if the thought of injecting daily would put you off from actually taking the medication, then some of the more weekly injections or new oral medications might be a better option.

Don't be scared about asking questions, an MS nurse should be a great source of unbiased information and will have dealt with many patients, seeing first hand which medications are tolerated better and are easier to manage.

When researching information online it is best to be careful and use reputable sources such as MS Decisions, the MS Trust, and the MS Society. It is all too easy to look something up online and come up with all sorts of scenarios, which can be based on option rather than fact.

The other thing to remember is that it is your body, and whilst a period of time is really required to let your body get used to the drug, if it is something that you don't get on with for whatever reason, then you are perfectly within your rights to change, and try another drug. The first drug you try need not be your only decision!

Kate Milne