Choosing a disease modifying drug: Jane's Story

Choosing which disease modifying drug (DMD) to start is not always easy and sometimes you'll find that you don't get on with the drug you have chosen. In this guest blog, Jane shares her experience of making a decision about treatment. 

My name is Jane; I’m 25 years old and live in Scotland. Having qualified as a nurse from University three years ago, I work as a nurse within the community setting. One of my passions from a young age has been sport, in particular netball, which I love to play.

Only six weeks after handing in my nursing dissertation I was diagnosed with MS, early summer 2015. This was following a period of double vision that occurred very suddenly and an MRI. I was subsequently transferred over to the care of a neurologist specialising in MS. Around this time I was also introduced to the most excellent MS specialist nurse, Mhairi.

Around six months post-diagnosis I started on my first DMD. This was in discussion with my nurse Mhairi and using the MS Trust's MS decisions resource. Using both professional advice and MS Decisions I was able to make the most informed decision regarding treatment choice. Initially I commenced on Tecfidera, due to its efficacy rate, balanced with non-invasive delivery and being in simple daily tablet form. This worked well to begin with but I then began to lose weight quickly without trying so I was advised to stop this.

Further conversations took place between Mhairi and myself and once again consulting MS Decisions. I chose to start on Avonex, despite the lower efficacy than Tecfidera and being in injection form, I decided this would be best for me. I felt comfortable learning how to inject myself just once per week and Avonex had also been about for some time so vast volumes of research had been conducted; I therefore felt it was reliable. I remained on Avonex for just over one year, keeping very good health, working four days per week and playing netball weekly.

Unfortunately, in May 2017 I had quite a major relapse, which was triggered by a severe migraine. On having a further MRI, it was confirmed my MS had significantly progressed. At this point my neurologist advised me that I should begin a second line MS DMD treatment. He advised me to look at three drugs via MS Decisions but one was automatically disregarded due to a pre-existing health condition I have. My choices were Alemtuzumab (Lemtrata), which is administered as an in-patient in hospital via an intravenous infusion in two treatment courses, 12 months apart, and Natalizumab (Tysabri) an intravenous infusion administered once every four weeks. I had many factors to weigh up including possible side effects from both treatments.

I opted to have Alemtuzumab for a few reasons: Firstly, due to the Progressive Multifocal Leukoencephalopathy (PML) risk with Natalizumab, I felt more confortable with the side effects associated with Alemtuzumab. Secondly, I felt having to travel to have an infusion every month for the rest of my life would impact negatively upon my mental health. Thirdly, I was still young and wanted to tackle my MS head on, I knew if Alemtuzumab worked I would hopefully need no further MS treatment.

As I write this I am two weeks post second round of Alemtuzumab. This not been an easy journey and it took me many months until I regained any sort of normal life post first infusion, which I failed to mentally prepare for. I did eventually recover and was able to return to work. Now that I have had my second infusion I am focusing on recuperation and after over a year and a half, I cannot wait to get back on the netball court I have so missed!!

My advice to anyone wanting to switch his or her DMD is, only try and fix a cog if it is broken! If your DMD is working for you, don’t switch but if you relapse or side effects become problematic, consult your MS nurse and access the My decisions resource produced by the MS Trust. You can then weigh up your options and decide what is personally best for you.

Post-relapse last year, with some extra time on my hands by blogging I began documenting my story, journey and how my faith helps me through life, by blogging. You can find my blog at myeyeissoretoday. Part of this title was formed due to both my major diagnostic symptom of MS being double vision and my relapse a migraine that left me with continual eye pain for several months. Please feel free to contact me through this.