Tysabri (natalizumab)

Tysabri is a disease modifying medication which is prescribed to people who have ‘highly active relapse remitting MS. The medication is taken intravenously every 4 weeks and aims to reduce the frequency and severity of relapses.

I started Tysabri in June 2014, after have 2 big relapses in the space of a few months, and have so far had 46 infusions.

The medication seems to be working although it does carry risks (Progressive multifocal leukoencephalopathy). What helps me cope being dripped up for a few hours every 4 weeks? Moofusion, snacks, my almost-wife and Twitter.

Moofusion: I have had Moofusion for almost 4 years and he attends every infusion. My better half bought him after my second infusion. The nurses love Moofusion, a lovely nurse gave him his very own hospital wristband! The same nurse also asked her friend to knit him a few little hats. I may be 28 years old but I love my cuddly mascot.

Snacks: Sometimes the infusion takes many hours or the cannula process is a bit horrendous. Snacks help the time pass, they distract and they are tasty.

Almost-wife: She has attended 98% of my infusions, driving me to the appointment and sitting with me or passing the hours in the waiting room when there have been no chairs! She brings me snacks on request, perfect.

Twitter: I am very grateful to access the meds & services that the NHS offer. Although I do not like IVs (they’ve always been the biggest fear which developed through hospital stays as a child with type 1 diabetes). However this difficult experience has allowed me to reach out to some of my favourite famous folk:

Val McDermid, Rachel Shelley, The New European and….J.K.ROWLING!!!

 

What other things do people do to cope with their IV meds?

 

 

 

 

 

 

 

 

 

 

 

 

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