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Tecfidera

So in rebif but I’m considering tecfidera. Rebif is working for me, before it I had 7 relapses in a year, since the meds, nothing.

But the injections are causing me so much pain. I’m brushing so much and it’s getting harder to find places to inject. When I started I had so much confidence injecting, now I hestitate all the time.

i just would like to know of anyone is on tecfidera and what kind of side effects of any they have experienced? My side effects from rebif felt horrible, I still get some of I forget to take painkillers with it

thanks for any help

hi samm

i’m about to start on tecfidera but just waiting for the wheels to get in motion.

like you it was my injection sites that has led to me making this change.

i was on copaxone since diagnosis. the first 4 years were no problem but now i only inject my bum.

i’m hoping that the side effects aren’t too bad.

flushing - been through the menopause so suppose it will be the same.

the runs - better than constipation. (putting a positive spin on it)

i do know that we will be carefully monitored and i’m having a new mri before i start.

carole x

I have been on tecfidera for 6 weeks now and so far haven’t had any side effects at all! I always take it on a full stomach. There are now quite a lot of tecfidera related threads in the forum if you want to follow them.

I’m having the same problem with my rebif so like you may be changing to tecifideria…interested to follow this thread. Xxx

I was on rebif for 9 years.

I’m now on my 15th week of Tecfidera.

​I feel much better. This is a good drug.

No more injections is great.

I had some mild flushing at the start but no stomach issues. The side effects were very mild for me.

Rebif kept me stable for a long time but i started to feel ill on it.

It was time to move on and i don’t regret my decision.

Good luck

Teresa.x

Tecfidera user and advocate right here! (And i didn’t even have to go through the labours of self-injecting to appreciate it!)

My side effects have been few, mild and easily and quickly managed with supermarket pills.

Week two gave stomach cramps about 30 minutes after dose; quickly resolved with standard paracetamol.

No signs of flushing, but pronounced and defused itching occurred in week 5; quickly resolved by anti-histamines.

No other problems; i attribute this primarily to ALWAYS taking on full stomach (apart from the bedtime dose, where i quickly go to sleep thereafter anyway).

An aspirin is recommended for ‘flushing’, but i take a daily one of those anyway.

Hair loss (NOT baldness) has been reported from some quarters but i have not noticed this at all. in fact, i am adamant that my legs have gotten hairier! (Not a bad thing as it has gotten chilly around here lately.)

Tecfidera is no bother (for me) at all and if it is as effective as trials suggest, it is an absolute god send, especially if all you are used to, is needles and cycling through injection sites!

Good luck and enjoy!

It sounds like I should make the change sooner rather than later!

i hate the fact I can’t hug someone without saying “ouch watch my arms” bruises!

Worst comes to worst with side effect I could allways wear a nappy right?

Hi all, ive been on avonex for nearly 3 years now but i would like to try tecfidera and do away with the injections, ive a yearly neuro appointment in march next year so may ask the about a change, anyone know is it fairly strait forward one dmd to another does mean blood tests mri etc? Tc.

How DMDs interact with one another is mostly unknown i think; you are likely to have a period where you take none, so you cleanse your system of the current regime prior to starting the next.

For tecfidera, there is a potential impact upon certain white blood cell counts and so their level needs to be checked before starting and then (for me at least) every three months thereafter.

As for MRI scans; i see no specific reason for why a start on / switch to tecfidera would necessitate that, but taking pretty pictures of one’s white matter i think is a luxury not to be refused if offered. such a relaxing, non-evasive method of checking out any disease progression…

Good luck and if i were you, i would see if i could get advice on a DMD switch before next spring.

Tc - i am on the tecfidera/aspirin trial. I am now just starting week 16.

With most dmd’s you have to come off one and wait a few weeks until you start another. This is not the case with Tecfidera.

You can go straight onto Tecfidera from avonex/copaxone/rebif/extavia.

Tecfidera works in a different way to the interferons so there is no need to take any break. Straight from avonex to Tecfidera for you! :slight_smile:

I’ve gone straight from rebif to Tecfidera . No MRI needed usually. Blood tests are the norm at the start of a new treatment though to monitor you are doing ok. I’m having bloods more often than most as am on this trial (monthly) and then i go to 3 monthly for the duration of the trial. Not sure how often after that though.

I suppose neuro’s will differ but mine wanted as short a gap as possible inbetween dmd’s.

Good luck

Teresa.x

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