Last reply 2 months ago
Tysabri, Ocrevus, Lemtrada

Hi all, first post after diagnosis in Feb.

I have RRMS and I have the choice of all three of the most aggressive drugs which is rare accordingly to the neuro team.

I am terrible at choosing anything, even choosing between tea or coffee if offered so choosing between these three possibly life changing drugs is another level.

I am leaning towards tysabri because it seems the least risky (JC negative) and doesn’t mess with my immune system too much.

Any advice/comments would be much appreciated.
Thanks

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dominics
2 months ago

@alfred – I’m just going to get in and say this. You have hit on my hobby-horse issue. I have just finished an article on this very issue – i.e.: why on earth are you left to feel that such an important choice is down to you?

The NICE guidelines on patient involvement in prescribing conditions do not actually tell the Neuro to leave you to be the final arbiter. It turns out that Doctors are not v good at these discussions. Risk is quite a technical thing when it comes down to it. If the Doctor cannot accurately understand risk – at the technical mats and stats level – then there is little hope of them be3ing able to accurately confer it to you to make a comparison that you feel happy with.

I have had MS 26 y (well, from diagnosis) and have had 4 DMT’s, culminating in Ocrevus. I have had to push for each and everyone so in a sense, I think you are very fortunate to have the options. That is a Good Thing.

Nonetheless, ask the Neuro to help you make a guided decision. They will have a view on the best choice for you clinically. However, you ought to be having Neuro led discussions about your goals, your attitude to risk and so on as part of it.

Press them for guidance as they are the expert(s) after all. Do PM me for more if you like. Save everyone here readfing me rant.

(I finished the article – 3k words – yesterday so it is fresh in my mind. I have also received pre-publication research about the influences on the Neuros of prescribing DMT. Good and worrying too)

Best,

Dominic

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