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stumbler
3 years ago

Aha, now I understand. This is not so much a trial of Lemtrada, but a trial of an additional drug to try and avoid the Thyroid problems that can be caused by Lemtrada…..

If only I was relapsing/remitting and living close to Cambridge……


Anonymous
3 years ago

Sorry, should have made myself clearer. If I met the criteria I’d be knocking at the door.

I wonder how many trusts have implemented Lemtrada yet? I know mine hasn’t.


lornies
3 years ago

Hiya
Do you know if this is current? It said on one of the pages it was approved in 2012. There was something similar on the ms society website but the closing date was July 2014. I’ll try giving them a ring later


lornies
3 years ago

Just to update, I rang up this morning & left a message. Got a call back and I’m not eligible because I’ve been on tysabri 🙁

So its deffo going ahead if anyone else is thinking about it give them a ring


Anonymous
3 years ago

Thanks for reporting back @lornies

I wonder if Tysabri users are just ruled out for this trial or if this would be the case for all?

As more MS drugs come on the market it is worth us asking if certain drugs may hinder eligibility for other drugs later on. Something to think about which may influence our decision making.


lornies
3 years ago

@sandwich It’s just for this trial as theres nothing in the NICE guidelines to say you can’t have lemtrada if you’ve been on tysabri. Such a bummer though! I’m nowhere near Cambridge but would deffo get myself there if they accepted me on the trial


Anonymous
3 years ago

Such a shame you don’t meet the criteria. I wonder why they’ve chosen to exclude tysabri users out.


lornies
3 years ago

I’ve no idea. Cleaner results for comparisons in patients I guess?


stumbler
3 years ago

As this is a clinical trial, then base starting points have to be accurate. Having another drug in your system has the potential to “skew” results, hence this requirement.

I’m not sure what the general “wash-out” period is for Tysabri, before you can start Lemtrada….. 😕


lornies
3 years ago

@stumbler I’ve been off tysabri for 18 months now but she still said no to me taking part in the trial. The wash out period is 3-6 months to go on lemtrada normally I think so I was a bit miffed to say the least!


lornies
3 years ago

My mum emailed the woman thats organising the trial cos she was annoyed lol. Anyway, she replied saying this
Thank you for your interest in our trial. However, unfortunately, your daughter will not be able to take part in our study because she has previously taken Tysabri.

Let me explain a little more …..

Trials are not “real-life” – but are designed to answer very specific scientific questions and as such have very strict inclusion and exclusion criteria. One of the exclusion criteria for this trial is previous Tysabri treatment. We cannot get around this; indeed we would get into a great deal of trouble with trial regulators if we tried to.

However, just because your daughter is not suitable for our trial does not mean that she is not suitable for Lemtrada. I suggest your daughter arranges to talk to her neurologist again explaining her anxieties about further Tysabri treatment and preference for starting Lemtrada.

I hope this helps explain things a little. I wish you and your daughter all the best,

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