“Just think of it as an enforced rest”, my MS nurse quipped as she rigged me up to the drip – and ain’t that the sad truth. Being a mum of two with MS doesn’t leave much in the way of ‘me’ time, but I’m not sure sitting in hospital was what I had in mind!
Nevertheless, here I am. On the Tysabri journey of discovery.
Starting a new MS treatment
It’s been nearly 16 years since I was diagnosed with MS and in that time I’ve been on Rebif, Copaxone and Avonex – none of which reduced my relapses.
It had been an awful year for my MS: my fatigue was shocking, I was tingly and I couldn’t walk far before the pain started and I stiffened up regularly. I was also suffering from cognitive symptoms like bad concentration, mixing up words and occasionally slurring.
So after having two flare ups in quick succession last year, it was time to get out the ‘big guns’.
I say ‘big guns’ because Tysabri is more effective than the treatments I’d been on before. It’s only prescribed to people who’ve had more than one relapse a year, so this was the first time I’d been eligible.
Although, with this comes more serious side effects. And Tysabri certainly has its fair share. The most serious being the brain infection Progressive Multifocal Leukoencephalopathy (PML) which can cause severe complications.
I was given all the information to look through. And after having lots of conversations with my consultant neurologist and MS nurse, I finally decided to give it a go. It wasn’t an easy decision.
What’s Tysabri like for me?
But now I’m on Tysabri, what has it been like?
Well, I didn’t have any side effects from the infusion. It could have been psychological or a coincidence, but the day after I really felt like my walking had improved.
I didn’t feel as stiff and achy, so I managed a decent walk around the park with my family – without the usual uncomfortable twinges and pain. It felt liberating and I felt great.
The MS hug
Then the ‘hugs’ began. I had suffered from the MS hug during my last relapse, and it’s far from a cuddle. For me it feels like having a stitch on either side of my ribs, coupled with awful back pain. Not too pleasant!
I started to have the ‘hugs’ more frequently over Christmas, lasting for hours at a time. Twice they were so uncomfortable I vomited, which was truly the icing on the cake!
My MS nurse explained that Tysabri keeps the white blood cells from entering the brain and spinal cord. Because of this, it can aggravate past lesions and some symptoms may become more pronounced.
I have to have infusions every four weeks. So far I’ve only had two so I’m very new to the treatment. This month it’s going well and I’ve been more stable.
I still have bad days, but on good days I see the difference. I’ve definitely been able to keep going for longer, and I just feel sort of...brighter.
My concentration and cognitive symptoms have been better and I haven’t had a hug. So all being well, it’s looking positive...long may it continue!
Chloe has relapsing remitting MS. She lives in Bristol with her husband, two kids and a miniature schnauzer called Obi. She's been blogging about being a mum with MS for six years and is an aspiring writer.