A Patient's Voice: EMSP Recap

Whenever I meet a fellow MS-er, I ask them their name, where they are from and what meds they are on. It doesn’t take long to move on to the benefits of their prescribed drug and if they outweigh the side effects brought into their everyday lives. Some side effects and limitations of a drug are easy to swallow. I had no bother cutting out the operation of heavy machinery. Others side effects are so obvious- they make me smile. For example, my sleeping tablets warn me that they cause drowsiness. Who knew!!!! Others are not so simple! 

The three little words “Flu like symptoms” sounds innocent enough when you read them, but I’ve come to hate those 15 letters. Every week for three years, I experienced “Flu like symptoms” for the day after I took my MS drug. That adds up to roughly 156 days when I felt like pooh- not because of my illness but because of the drug I was taking. I tried to work around the problem. I tried taking the medication at night so that I might sleep through the side effects. I tried taking the “Flu like symptoms” on a low profile day (sorry Wednesday!!!) when not much happens. I tried waiting to see if the side effects decreased over time. They didn’t! Those Woeful Wednesdays always followed the same path. Struggling to get through everyday tasks; I battled to do what I had done the day before and was able to do the day after. Wednesday usually ended with me fighting with the people I love because of the miserable side effects of my weekly jab. It was depressing to know in advance that I was going to feel like crap one day a week- especially if we were doing something nice, like going on holidays. No matter how hard I practiced the “It’s fine- you guys go ahead without me! “line, I hated missing out. I spoke to my Neurologist about the Hobson’s choice I had. It boiled down to the following dilemma: “If my MS drug is reducing the chances of me relapsing- is it worth feeling awful for one day a week?” Side effects are something that we “suck up” because the drug we are taking provides a benefit that outweighs the negatives- or so we hope! My G.P nails it when he tells me that it’s not Smarties I’m taking. Isabelle Moulon from the European Medicines Agency echoed my dilemma when she spoke of “the patient’s voice in the evaluation of medicines" at the EMSP Spring Conference in Dublin. The well worth reading whitepaper says that:Since patients will be the ones taking these medicines it makes absolute sense to incorporate their values and their knowledge at different stages throughout the long process of developing, assessing, licensing and monitoring medicines. I hear ya Isabelle! She also spoke about something called the Black Triangle which is used to identify medicines that are being monitored particularly closely by regulatory authorities. It felt empowering to know that steps are being taken to treat the patient in the trenches as a stakeholder whose knowledge, views and preferences are as significant as any of the other stakeholders in the healthcare process. Patient power!!!!       It’s a tough decision to change to a different drug. It’s a bit like breaking up with your current partner and seeking a new relationship. Is it better the Devil you know? Maybe the new drug will be worse than the one you were on but there is also the chance that it will be better. All the shiny literature woos you to change but when you get down to the everyday realities- you have to be a brave grown-up and ask if it’s worth the risk. I went solo for a while after my previous drug break-up in November and relapsed over Christmas. Whaaaagh!!!!!!!! I wanted to be on a drug but it had to be right one for me (this really sounds like the dating game!). I’ve been with my current drug for three months now and its so-far-so-good. No more Woeful Wednesdays! No more “Flu like symptoms”!  The experience made me think about the role of the patient in drug evaluation. How do you make an informed decision on a medication you are offered? Do you rely on Doctors, online forums, fellow MS-er’s or drug literature? Have you been in a similar situation where the side effects of a drug significantly decreased your quality of life? Have you ever been asked for feedback on the cost-benefit of a drug you are on? I would love to hear your experiences!