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Tecfidera and Tysibri

Hi

Well after lots of thought have decided to come off Copaxone as it is causing lipoatrophy. After a year I am already down to six injection sites with four more starting to develop problems. I was on Rebif for six months which made me very ill, so other interferons have not been recommended.

My health authority are not using Gilenya which leaves, I think, Tecfidera, which will hopefully be available in Autumn, or Tysibri which I may not qualify for.

Just wondered if anyone had experiences of either of these two DMDs they could share? I know Tecfidera is very new, so not be many who have used it yet. Or if anyone else had to come off Rebif and copaxone, what treatment option, if any, did you go onto next?

thanks

mish x

Hi

im on tysabri , had my 6 th infusion this morning , it’s been great for me so far no problems and no relapses.

ive spoken to people who have been on it years and they have had great results.

good luck

Hi Gray

Thank you. I have heard Tysibri has good results. Hope things continue to go well for you.

mish x

Hi Gray

Thank you. I have heard Tysibri has good results. Hope things continue to go well for you.

mish x

After 10 years on rebif i have just come off it as i started to feel unwell. I have moved onto Tecfidera. Only been on it a week but i am doing well so far with hardly any side effects. It’s early days yet of course. I like the fact that it is in tablet form.

I couldn’t have the gilenya or tysabri as my ms is pretty mild and these were second line treatments.

Options for me were tecfidera,copaxone,avonex,extavia, and the other new oral one - aubagio.

I chose tecfidera because of minimal side effects and because it’s looking to be a very promising new drug.

best wishes

T.

I’m pregnant at the moment, and was DX whilst already pregnant so have no experience of DMDs. However, my MS nurse has recommended that I start taking Tecfidera as soon as the baby is born. So I shall be watching this thread with interest

PG xx

Thank you for your replies

Oh I do hope Tecdidera works out for you and doesn’t make you feel poorly like Rebif. Let’s hope those side effects stay minimal.

I think our health authority are still to authorise it, so it is not available in our area yet. I have replied to a letter from my neuro asking her to put me on list for Tecfidera once it is available. In the meantime I shalll have a break once current batch of copaxone is finished.

Mish x

Thank you. My MS said it would hopefully be round autumn time if everything went ahead ok. Course not sure how long I will have to wait once paperwork sorted. I expect it will vary in different areas.

mish x

I do not live in Scotland.

The reason i have got on Tecfidera early is because i am on the latest trial.

The trial is to test different doses of aspirin on the flushing side effects of tecfidera.

We all get the tecfidera but there are 3 different doses of aspirin that we are trialling with it.

low dose/high dose/placebo

Of course - i dont know what dose of aspirin i am on.

The first week is half dose tecfidera and then i double my dose in week two.

The side effects are minimal so far. Just a red itchy rash the first day for a couple of hours. Will wait to see how i am on the doubled dose.

I did really well on rebif for 10 years and my ms has had minimal impact on me. They don’t know why i have failed on the rebif after all this time but i am feeling great on the tecfidera so far. Its very early days yet though of course.

T,

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I’ve been taking Tecfidera for two months now. Made the decision to go pay for it myself as couldn’t face any more injections. Really hope it will be freely available shortly.

So far I haven’t had any side effects other than quite intense flushing for ten - fifteen minutes after the morning dose. you have to make sure you have a full and balanced breakfast before you take it without which i have also experienced a minor tummy upset. again, that wears off very quickly too.

all in all it’s going really well and very easy to deal with. not nearly as bad as some of the other drugs.

T sounds interesting being among the first to be starting Tecfidera and trialling the effects of asprin on the flushing side effect. So do they tell you at the end of the trial what aspirin or placebo you were on?

Laura yes, I hope it will be freely available soon to. I have three more weeks of Copaxone, I want to finish injections I have, then shall be watching the calendar to see when I can hopefully re start a medication. Crossing my fingers side effects don’t me as much this time.

thank you for replies

mish x

Yes Mich! - i can find out at the end of the trial what dose of aspirin i have been given.

T.