MS - 'Monthly infusions help treat my MS'

Narinder Kaur-Logue has an aggressive form of relapsing remitting multiple sclerosis. She experiences severely debilitating fatigue on a daily basis and has regular relapses. Earlier this year she began having a monthly infusion of the disease-modifying drug (DMD) Tysabri.

“When I was first offered Tysabri I didn’t want it. I’d heard about people who had died on the trial and didn’t want to put my life at risk. When my doctor explained how isolated those cases were, and that the treatment had finished trials and had been approved for treating aggressive forms of MS, I decided I would give it a go.”

Narinder had previously taken Copaxone and Avonex - DMDs that are self-injected. 

“I had lots of side affects with Avonex and I hated the daily injections with Copaxone. I felt like I was stabbing myself and sometimes had to ask my husband to do it for me. The monthly infusions for Tysabri are painless and straightforward and I no longer have the stress of bad injection site bruises.”

Narinder’s MS symptoms include fatigue, mobility and vision problems. “I’m unable to work because of my fatigue,” she explains. “I tend to get errands and exercise done in the morning and then come midday my body starts to shut down, fatigue sets in and I can’t do anything other than rest; it’s like flicking a switch”.

Tysabri has been known to cause the life-threatening virus progressive multifocal leukoencephalopathy (PML), but risk of developing this is small. Potential side effects of the treatment can include infections, headaches, dizziness, vomiting, nausea, liver damage and infusion reactions. Narinder started receiving the infusions in January and hasn’t experienced any side effects so far (eight months later).

She said: “I can notice a difference in myself and it seems to be keeping some symptoms at bay. My balance has improved; I don’t wobble as much when I stand after sitting and I now have the confidence to wash my hair without someone in the house. I have more energy too. I danced at a party recently – something I haven’t done in a long time.”

“I’m lucky that I’ve been able to access Tysabri – I know of others that have had to campaign for months. Tysabri won’t work for everyone; it only treats aggressive forms of relapsing remitting MS and some people may develop side effects or not like the idea of the two-hour hospital infusions once a month, but it’s working well for me at the moment.”