In our latest guest blog Christian tell us about his experiences on the MS-SMART trial...
It all began in 2015 when I saw the advert for the trial, I felt a little/lot hopeless with being secondary progressive and not taking any medication to help as at this time there are no drugs to help. I read up on the trial and completed a short survey to check my suitability for the trial, obviously being such a specimen I passed that with flying colours. A phone call follows and I was on. The trial places me on one of three drugs or possibly a fourth being the placebo. The three drugs were Amiloride (used to treat heart disease), fluoxetine (used to treat depression) and riluzole (used in the treatment of motor neurone disease).
The first day of the trial was a trip to London (Queen and everything) for a 9am start at the University College London Institute of Neurology. I was signed up and asked if I could take part in two further parts of research, one was a photograph of the layers of my optic nerve (about 20 minutes, they think they can tell speed of progression from the thickness of the layers) and the other a lumbar puncture. At first I said no to the lumbar puncture as I’m a bit cowardly but after a comment by a doctor and an hour and 18 minutes in an MRI machine I guilt-ed myself into agreeing to do it. The MS Smart trial itself was measured by an eye test with invisible letters, a walk test, MRI, peg board and a few cognition tests. Unlike the tests my neurologist sets me these were some that I actually could do without looking like a total drunk and even one that I was very good at scoring 56, 58 and finally 60 out of 60 so improving each year.
It was a long day and I think I drove home early evening. I had to return every month for a blood test and to pick up my tablets, after 6 months it reduced to every 3 months and after a year every 6 months. I live in Maidstone, Kent so it was a real day out in London for me. The tests were repeated after 1 year and on completion (2 years). In my naive mind I thought I would find out what drug I’d been taking for 2 years on my last visit but the last person does not finish their 2 years until April 2018, the results then take at least 6 months to work out so it could be 2019/20 before I find out. The nurses that took my blood and checked my tablets were fantastic, even Tiggy who made me scream like a howling banshee doing me a favour using a big needle to save time on taking blood as she needed extra. Ouch.
If I had the chance of doing it all again I would, the only real problem I had was relating to the second lumbar puncture which left me with a headache like brain freeze that lasted for a full week. I felt low after finishing my two years and the stopping of the tablets I was on, this is either a side effect of stopping the tablets or more likely just a feeling of no longer trying to stop my multiple sclerosis, I don’t like having no control.
The outcome of the trial was never to fix me but to delay or even halt the progression. I feel the same but progression is so slow I didn’t notice playing football one day to today bouncing off walls .
They are about to embark on a new trial using Statins, I was asked if I would like to do that too. We will see…
You can find out more about the MS-SMART trial on the MS Society website at www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/ms-smart. Please note that this is an external site.