How Tysabri affected my life

I was diagnosed on the 14th August 2012, therefore knowing about my condition is fairly new and fresh. I still remember the initial shock of confusion I felt the moment I was told. Mainly because I had no idea what Multiple Sclerosis was and the impact it could have. It didn’t register until I actually did more research and thought about what I was told.

I had to accept and move on with my life, without dwelling on this colossal and life changing piece of information. Even though, I am still getting to grips with the condition, how it has impacted my lifestyle, its control over my body and how I feel on a daily basis. I am still discovering information about the condition, treatments available and things about myself I didn’t realise I could cope with. However I find it helps when I keep my mind busy and body focused on what I’m doing and where I need to be.

After having three relapses very close together between the months of October to January I was categorised as having highly active relapsing and remitting Multiple Sclerosis. Thus making me eligible to receive the treatment of Tysabri (Natilizumab). This is a monthly infusion drip administered by specialist MS nurses at a hospital in a specific Neurological Day Case Unit. The infusion is a monoclonal antibody that inhibits the migration of leucocytes into the Central Nervous System, hence reducing inflammation and demyelination. I was also offered the choice of self-administered injections as a daily treatment, such as Interferon Beta. However, this wasn’t as effective and potent as Tysabri is. Although, with great effectiveness comes great risk.

This peril was a brain disorder called PML and the symptoms associated such as; memory loss, deterioration of sight and possibly death. If you were JCV Positive and kept on Tysabri for longer than two years this risk increased and chances would become more likely. This was the main factor that doubted my decision to choose this type of treatment. In order to help me decide, I watched a clip about how Tysabri helped people suffering with MS and what an incredible difference it made to their lives even though they were all JCV Positive and on the treatment for months. After discussing my options with my family and weighing out the pro’s and con’s I finally came to the conclusion; Tysabri would be best for me.

This decision was made in regards to my family’s support, my busy workload studying for a Pharmacy degree and travelling back and forth from University to my hometown every month which I knew could be possible.

I received my first infusion on Thursday 2nd May 2013. My walking, vision, balance, my reflexes and responsiveness to tactile prompts were all assessed. This cyclic check-up occurred every time I received my infusion as I am JCV Positive. This was also to monitor if there were any new side effects or symptoms of PML that could potentially arise.

I will be extremely gutted when I have to stop receiving Tysabri. It has been such phenomenon and done wonders to my life, even though at the back of my mind I don’t want PML either.

Tysabri has made me feel like I have got my life back. My walking has improved immensely, as I can now walk in a straight line again like I did before my relapses began. I don’t feel conscious of falling, shaking, tripping over and feeling dizzy when walking or getting up too quickly. I can now look left and right without my eyes shaking from side to side when my head is still. I feel more confident in my own skin and that I can trust my body in all situations and places. As a result, I am taking each day as it comes and determined I can overcome this mêlée. I’m not afraid of losing control over myself anymore.  Anon