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Asking Neuro for Tysabri

Hi all I hope you are as well as can be today. I had IV steroids two weeks ago after several relapses and have my follow up appt with my Neuro on Tuesday to discuss drugs options. I would really like to start Tysabri and wondered if anyone had actually requested this and been put on this without having to try one of the injectables first? Many thanks. xx

This is what is written in the NICE guidelines:

“Natalizumab [Tysabri] is recommended as an option for the treatment only of rapidly evolving severe relapsing–remitting multiple sclerosis (RES). RES is defined by two or more disabling relapses in 1 year, and one or more gadolinium-enhancing lesions on brain magnetic resonance imaging (MRI) or a significant increase in T2 lesion load compared with a previous MRI.”

So if you have had at least 2 disabling relapses and you have more lesions on your brain MRI then you should be eligible whether or not you’ve been on an injectable DMD.

Good luck!

Karen x

Thanks Karen I read that too but have no idea what a T2 lesion load is all about. :lol: My recent MRI shows a big active lesion on my brain left frontal lobe which is a new one, and a few small new lesions on my spinal cord. I’m going to ask anyway on the premise if you don’t ask you don’t get. :smiley:

T2 lesion load just means the amount of lesions visible on a T2 scan. A T2 scan is just a type of MRI scan in which lesions and fluid show up as bright and white matter shows up as dark.

If you have a large enhancing lesion in your brain and new spinal lesions then I would have thought you would qualify, but I’m not a neuro - their logic is very often a complete mystery to me!

Fingers crossed for you :slight_smile:

Kx

Not everyone tries one of the first-line DMDs first. It depends on your neuro’s assessment of how your MS is behaving, and - as always - your neuro’s individual views on the matter.

No harm in asking, though - at least you should get a reasonably full statement of what your neuro thinks about your MS and what will suit you best.

Alison
x

Thankyou for that explanation Karen, it makes sense to me now. :slight_smile: When my neuro showed me my scan on his computer the brain lesion was very large and very bright white and the smaller ones still white but not as bright, so maybe they were not as active? :? I’m keeping my fingers crossed too. xx

Hi Susie
I was on Avonex before I got the chance to try Tysabri I asked my neuro could I try Tysabri I started Avonex on March 2007 but I just seemed to keep relapsing and getting worse everytime I asked him he always said give Avonex a while longer that Tysabri can have risks I knew the risks.
I seen him again in June 2008 I begged him this time to let me have Tysabri I was in tears I told him how bad do I have to be I was relapsing every 4 or 5 weeks and by that time I was in a sorry state I was in a wheelchair I lost control over my bowels and bladder my speech breathing and everything was affected infact I more or less just had the use of my left hand even trying to stay awake for a few hours at a time was hard.
He gave in to put me on Tysabri I started in August 2008 I haven’t had a single relapse since I’m walking now and everything I walk with a limp sometimes and I have to use a catheter but if thats all I have to worry about I’ll be more than happy.
I didn’t get like this over night it was an up hill climb but it was a journey I enjoyed every minute of.
I even goto yoga and the gym now I feel stronger and fitter than ever I even have more energy then I had even before I had MS,
I was the first my neuro had on Tysabri but since he’s seen the way its worked for me he has alot more and I even know a few thats went straight onto Tysabri before things got as bad as they did for me.

Mark xx

Thankyou Mark for telling me about your journey with Tysabri and I’m so pleased it has been a good one for you hon. It makes me more determined than ever to get this drug, I’m not expecting a miracle but to stop these disabling relapses and slow down progression is my hope. xx