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Tecfidera

Hi

Seeing an MS specialist at Kings College Hospital today as am due to start the new medication- Tecfidera.

This is the one that has recently been approved as an oral form of meds. I am lucky enough to get hold of it now as I am taking part in a trial/study where they are seeing if aspirin can help with the ‘facial flushin’ (one of the side effects of the medication).

I have tried both Rebif and Copaxone but failed with both as i couldnt handle the side effects, i did try, but it didnt work.

Just wondered if anybody could give me any advice or knowledge that they have of Tecfidera, and if anybody else has began this form of medication and has any experience they would be kind enough to share with me?

Thanks

Louise

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Louise - there was a post regarding Tecfidera last week on here, if you have a search - it’s pretty new so experiences may be limited…good luck…

Hi Louise,

I’m also waiting to start on this drug - my MS nurse has said she expects it to be available from October but they’ll know more at the end of this month. Neurologist I saw at Addenbrookes seemed pretty keen on it.

I’ve not been on a DMD since April when I came off Gilenya which I hated. I’ve had no relapses in that time but just daily overwhelming fatigue (like I had before I started on Rebif ten years ago) so I haven’t been at work since May. I know DMD’s aren’t supposed to help with fatigue but the two I’ve been on both have despite what any neurlogist tells me!

Sick of waiting now though - I saw neurologist in January who agreed Gilenya wasn’t working and here we are in September and I’m still not on a new DMD.

Can’t wait to get started!

Hi Louise!

I have been on this trial for about a month. I will send you a pm.

T.

Hi

Thanks to everyone for your responses. I saw the person in charge of the trial yesterday, and all looks good for me to start this! Just waiting to heard back if my blood results etc are ok and then can go on to it. Shall keep everyone updated :slight_smile:

Thanks again

Louise x

How are you getting on Louise? I was going to start this tomorrow but based on reading of other threads I think I need to check out a few things with my MS nurse first.

The ENDORSE trial suggests promise in the sustained use of Tecfidera.

Granted, it was conducted by the makers of the product, but hopefully some peer review will help to uphold the findings.

A few words about it: http://multiplesclerosisnewstoday.com/2014/09/15/biogen-idecs-study-reviews-positive-results-five-years-tecfidera-rrms-treatment/