My experiences with Kesimpta (ofatumumab)


25 February 2022

I was diagnosed with relapsing remitting MS in September 2021. I had been suffering from blurred vision that I thought was due to my blood sugar levels. During 'Lockdown One' I decided to go on what I now call, The Big Walk. I hadn't got very far when I started dragging my feet and suffering from spasticity in my legs. This had never happened to me before. I normally went to the gym two or three times a week so shortly after I called the GP. They got me in the next morning for a face-to-face appointment and I was referred to neurology.

What happened after was a landslide of symptoms. I had them all. Pins and needles in my hands and feet, extreme fatigue, inability to walk properly and spasms in my legs all meant that I had to take the next three months off work.

Initially I agreed to start Tecfidera but I was also told about Kesimpta so it was agreed that I would go away, do some research and decide what I wanted to do.

After multiple MRIs, a lumbar puncture and VEP (visual evoked potential) tests, I eventually received my diagnosis. At my first appointment with a new Consultant Neurologist, I was offered DMDs and given a list of approximately eight different treatments.

The DMDs were categorised by effectiveness, but there were some I wasn't eligible for because my MS is not as active as others. Initially I agreed to start Tecfidera but I was also told about Kesimpta so it was agreed that I would go away, do some research and decide what I wanted to do.

Would I actually remember to take tablets twice a day? What were the potential side effects? What would the effect of the medications mean for my life going forward?

I looked online at the MS Trust and MS Society websites, various NHS resources, forums, pharmaceutical websites and journals - anything I could find. I thought about what would work for me. Would I actually remember to take tablets twice a day? What were the potential side effects? What would the effect of the medications mean for my life going forward?

Not taking a DMD was never really an option for me. My relapse had been so debilitating, so terrifying and had turned my life upside down. I didn't want to go through that again and if I was offered the chance to prevent that from happening, I was going to take it.

In the end I chose Kesimpta because it was potentially more effective at preventing a relapse, had less side effects and I was happy to self-administer the medication. I preferred the idea of taking the medication at home rather than at hospital and I liked the idea of taking control of my treatment myself. I didn't really think about how new Kesimpta was. I had read articles about the trials and subsequent approval but I had complete faith in my neurologist and the MS team.

My MS team were incredible. I had a phone appointment when I decided to opt for Kesimpta, and the schedule of treatment was clear and concise. I had to have a flu jab, pneumococcal and hepatitis B vaccine as well as a blood test and cervical screening before I started.

It was made clear to me that this medication is preventative. It's not meant to help with symptoms but I am starting to feel like myself again.

After I had been vaccinated and all the results were back, I went to meet the MS team so they could reiterate how Kesimpta works and any potential side effects. I was then supervised administering the medication for the first time. After the first injection I felt fine until about four to six hours later when I started to feel achy and suffered from flu-type symptoms for 24 hours or so. I didn't have any pain at the injection site.

I have not had any side effects with any of my subsequent injections. I make sure I inject a couple of hours before bed so I can sleep off any effects, but so far so good! I had a follow up appointment a few months in to check how I was getting on and to make arrangements for my next set of blood tests. I have to have those every six months while on Kesimpta.

I still struggle a bit with walking and use a stick now. Plus, when I get tired, I do notice the impact on my speech and memory but my MS symptoms seem to have improved since starting Kesimpta. It was made clear to me that this medication is preventative. It's not meant to help with symptoms but I am starting to feel like myself again.

My advice to anyone trying to decide on which DMD to take (if any) is to think of your lifestyle and what would work best for you. MS can take a lot from us, and medication should not be another thing to worry about. Kesimpta works for me; I like having the control of doing the injections myself, it is quick and easy and I am well supported by both my GP surgery and MS team.

This is one of a series of personal stories about all kinds of MS drugs and treatments, written by people living with MS. If you would like to share your story, to give other people some context for their own decisions, you can contact us on mystory@mstrust.org.uk.

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