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changing drugs?!?

my ms nurse sent me a letter saying i can change from copaxone to tecfidera

anyone on this new drug or considering changing themselves?

hi martin

i’ d love to try a tablet form because my injection sites are really bad.

got an appointment in 2 weeks so i’ll ask.

copaxone has been good for me for 6 years but i can’t stand to inject any more.

good luck

carole x

Hi Martin.

I was on copaxone for a year but the drug didn’t agree with me had to come of it.

I will be going on Tecfidera in January I have decided to wait because of the festive season plus I have a holiday booked in Tenerife.my ms nurse agrees with my decision has copaxone will stays in your system for 3 months.

I am looking forward to no injections as I also was on rebif for 6 years .I think tablets are now the way to go Tecfidera also cuts relapse rate by 50 percent rather than 30 percent with copaxone.

I wish you good luck with whatever you decide.

Annex

I have just started Tecfidera. Less than a week ago so still on the half dose (for the first 7 days)which is standard practise to help the body get used to it. I’ve had mild flushing about 2 hours after taking the tablets and that is becoming less noticable. My guts have been a bit noisy but the worst outcome has been being a bit burpy.​

It was my neurologist who suggested th change at my annual review a month ago.

I’ve been on Extavia since last September. It did quiet the MS symptoms but I did have a trivial relapse. At the time trivial; but it is best to have none.

As has been pointed out Tecfidera cuts relapse rate by 50 percent rather than 30 percent with copaxone/interferon in trials (large numbers of test subjects) and there is weak evidence of neuroprotection.

I am enjoying not injecting!

Tecfidera is my first choice; Copaxone was choice number two if #1 was inappropriate / unavailable.

Flushing can be resolved by taking aspirin; gastro-gurgles supposedly are negated by taking the drug on a full stomach (ie. more than just ‘with food’). Dark chocolate is also supposedly a good accompaniment.

Life is tough enough without dealing with the careful handing and storage of injectables, not to mention the potential list of issues regarding injection sites. Just take the extra pill with your daily vitamins i reckon.

Also, if you fear conversion to a new drug, you can ramp up using an initial 50% dose (2 x 120mg) for week one, 75% dose (1 x 120mg and 1 x 240mg) for week two before going full bore in time for week three (2 x 240mg).

I have changed from Rebif to Tecfidera.

I was on Rebif for 9 years.

I am on my 9th week of Tecfidera. I am doing well so far.

The flushing has been mild and i have no stomach problems.

I think more and more people will change onto Tecfidera as it becomes available.

I have got it early because i am on a trial. The Tecfidera/aspirin trial.

T.

thanks im 99% sure im changing to tecfidera

im just wondering if it is nationally available yet?

Tecfidera is available in Scotland and other countries such as Australia and America.

It should be available for us in England around November.

T.x

Doesn’t it bother you that Biogen are charging the NHS £40,000 per year for Tecfidera?

It was originally used for Psoriasis by a German company and they charged hundreds of pounds rather than thousands.

Tecfidera is an ester of this original compound. Biogen bought this company out and then did trials for MS and now charge a fortune worldwide.

I know it makes me pretty angry. I am not on anything at the moment. Both Rebif and Copaxone gave me pretty horrible side-effects.

I am pretty sure I will be offered Tecfidera at my next neurologist’s appointment but I am not sure I will take it.

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I have a neuro appointment tomorrow and really hope that Tecfidera is on the list of available treatments on offer for me. I am a little dubious though as this is my first appointment since diagnosis and think that i will need to go on an injectible first. Taking a tablet is so much more appealing.

are you sure its 40 grand a year on the nhs

i read it was 18 grand?

oh and i got a letter from my ms nurse saying there just sorting out the funding but im on the list

yayyy no more injections by christmas!

Yes, you are right. It’s £17,000. It was going to be sold at $50,000, obviously the NHS got a better deal. I’d better stop ranting. :slight_smile: