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Tecfidera

Everyday living
#1

Hi

i have been on Avonex since Aug 2011 but after seeing a Neurologist in Southampton 2 weeks ago he mentioned Tecfidera. I am being booked in for an MRI to check for any changes which may be before or just after Christmas. Tecfidera is not currently available to me as I don’t live on the Mainland but it may be available in the New Year.

I was trying to do some research on it and had the shock of PML coming up in search. I am now petrified that I could be making a huge mistake by swapping if becomes available in the New Year.

Any thoughts?

Thanks

Tracey

#2

regarding tecfidera - do it

regarding PML - do not worry about it at all. seriously. don’t.

not on the mainland? you are still in europe though right? the reasons authorities give for not dishing out the good stuff; makes me wanna wretch. what a wanky excuse. shake my head.

one nice thing about the tecfidera option, is that you seem to get regular MRIs. we are all guinea pigs of a sort and so they like to take before and after photos of the lesion rich white matter. i am going for my annual photo shoot next week! i hate that bloody tube!

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#3

hi tracey

the doctors and nurses are well aware of PML and you will be monitored thoroughly.

MRIs and blood tests every time you see your ms nurse which is every 6 months.

it is wonderful to not have to inject (self harm).

the tablet is so easy to take.

give it a try and come on here to chat about any concerns you have.

good luck

carole x

#4

Hi Tantar,

I’ve been on Tec since Feb. PML is a very minor risk and so far those who’ve developed it had other underlying health problems. To combat any risk they give you blood tests every three months to confirm your lymphocytes.

I’ve found it a big improvement on Avonex. The side effects vary for everyone but are usually manageable. Theirs an excellent Facebook group UK and Irealand BG12 Tecfedira where theirs a wealth of advice and support.

good luck

Adam

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