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Tysabri to Lemtrada

Hi All, hope you are all well.

Just wondered if anyone has gone from being on Tysabri and changed to Lemtrada ? If so how did it go ?

I’m currently on Tysabri but cant help thinking that if/when the NHS is privatised, theres no way i could afford to stay on Tysabri

With Lemtrada it sounds like treatment over two years and thats it done. Hopefully that could be achieved before the dreaded privatisation, if it happens. I know it sounds a little selfish but cant help looking forward.

Look forward to any thoughts thanks.

Mick

Hi Mick

I haven’t swapped from Tysabri, but I have just undergone round 1 of Lemtrada last week. Went very well and fingers crossed, no nasty side effect yet.

However, please don’t think it’s all over in two years … patients have to sign consent forms and commit to a total of five years of testing every four weeks to ensure they don’t go one to develop secondary conditions as a result of the treatment.

I guess as well as keeping us as healthy as possible by picking up the early indicators asap, it must cover the NHS & HCP’s against any possible legal action down the line, if a patient does go on to become ill or die from e.g. kidney disease.

My MS nurse told me she only knew of one death in the UK programme - a lady who felt so well after her second treatment that she felt she didn’t need the hassle of going in every four weeks for her blood and urine tests so stopped going.

AngC

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It seems to me that, if we are all struck by a catastrophe, it probably won’t be the one we thought we saw coming. Fate likes that kind of joke.

Seriously, unless you know something we all don’t, I would leave your drug regime alone if it is working for you. It’s tough enough dealing with the uncertainties of the here and now and of our own MS. Trying to see round corners makes an already difficult task literally impossible.

Alison

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