Leigh Hewitt was diagnosed with rapidly-evolving relapsing-remitting multiple sclerosis in 2013. She runs the blog "Live with it, but don't lose to it" which is about her life with MS.
In this guest blog she tells us what it was like finding out that you have to stop one disease modifying drug and move on to another option.
"I'm an English graduate with a passion for the written word, an addiction to the gym and a weakness for good food. I was diagnosed with rapidly-evolving relapsing-remitting multiple sclerosis in 2013 - in my final year of university. Since then, I made a promise to be as healthy as possible and to try every treatment I was offered to make sure I could maintain the quality of life I had been used to. I started Tysabri in 2013 and then was swapped to Lemtrada on the advice of my neurologist. I've lost three stone in weight, train hard at the gym and let nothing get in the way of living my life the way I want to."
In 2013, I was diagnosed with rapidly-evolving relapsing-remitting multiple sclerosis after losing the sight temporarily in my left eye and then the use of the entire left-hand side of my body. The diagnosis was devastating to me, but I was lucky – it was caught early and I was able to start a treatment that could reduce my relapses by up to 65%.
That treatment – Tysabri (natalizumab) – changed my life for the better. In the three years I had the monthly infusions I didn’t have a single relapse. The chronic pain and flare ups were still there, but I could handle that. As with all medications, there were side effects, with one in particular being pretty serious. I was at risk of contracting a condition called progressive multifocal leukoencephalopathy (PML), which can be fatal.
It is caused by something called the JC virus, a common infection which is kept in check by our immune systems. If you test positive for this virus, the risk of PML becomes an issue. The risk remains low until you are on Tysabri for two years, when it jumps to one in 100. While this statistic worried me, it didn’t compare to the uncertainty I felt about coming off the treatment. However, earlier this year, my neurologist told me that she was no longer happy for me to stay on Tysabri and I had to consider new options.
I often make jokes at my own expense when it comes to my health, as I find humour helps me deal better. But I am in pain all the time. I have bladder problems, vision problems, I often lose the use of limbs for short periods of time, and I have limited sensation and dexterity in my hands. I tried really hard to think about what she had said logically, but all I could do was cry. Tysabri had given me a new lease on life. It had allowed me to find the strength to train hard at the gym, shed three stone and not let MS interfere with how I wanted to live my life.
But it could kill me or lead me to have an even worse disability.
The two treatments I was offered were a tablet called Gilenya (fingolimod), which still carried a small risk of PML, or an infusion of an anti-cancer drug called Lemtrada. I never really considered the tablet, as it was less effective against relapses than Lemtrada and still had some PML risk attached to it.
Lemtrada only needed to be administered twice – over 5 days in the first year and three in the second year. Its effectiveness against relapses was comparable to Tysabri and 65% of people who’d been given the drug had never had a relapse again. These were impressive stats, but, of course, there are side effects. It can cause liver problems, thyroid disease and a low platelet count, plus the infusions themselves can cause rashes and chest tightness. The drug basically destroys your immune system, allowing it to rebuild without the problems caused by MS (hopefully).
This process can take up to 6 months, and for around 4-6 weeks after you are vulnerable to infection, as there is nothing really in your body to fight off viruses. You also must be monitored through blood tests every 4 weeks for 5 years, so that your doctor can look out for signs of the side effects.
All of this sounded horrendous, but those impressive stats kept creeping back into my mind. The thought of never having a relapse again filled me with a new hope, one that I hadn’t felt since before my diagnosis. It could help me regain ever more control over my body and life, so I decided it was a risk I was willing to take.
I had my treatment at Salford Royal Hospital, under the care of an amazing team of nurses who helped me at every step of the process. It took a tremendous toll on my physical and mental health, with some days seeing me use a nebuliser more than once to help loosen the restraint I felt in my chest. There were days were I couldn’t find the energy to sit up or cross the corridor to use the bathroom. Showering, eating and even blinking were exhausting tasks. I couldn’t imagine having to have this drug alongside chemotherapy, which is how it is also used to treat cancer.
The week sucked, but I knew it would come to an end on the Friday and I could recover in my own room. However, I couldn’t leave until the following Monday, as I managed to catch an infection before I even left the hospital! This made me realise how vulnerable my body was and how I had to look after myself and let everything else take a backseat for a while.
I’m now at home, trying to rest and recover. I’m finding it hard to sit around and do nothing, so I’ve decided to journal the days and weeks after my initial treatment. I’m hoping that this helps other people who have been offered Lemtrada to make their own decision about their future.
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