Last reply 8 months ago
tecfidera

I was diagnosed with relapsing remitting MS back in 2007. My relapses used to average one every 4 years until last year. I was fine for a year after having my daughter then had two relapses within a couple of months. It was the first time I qualified for a disease modifying drug. They put me on copaxone but I couldn’t handle the injections, so only lasted 3 weeks and we couldn’t try anything else because we wanted another baby. I had another relapse earlier this year while I was pregnant with my son and they want me to go on another disease modifying drugs. I ruled out the infusion and injections so we are looking at tecfidera. Has anyone tried it? What was your experience? Did you get side effects and if so how long did they last? Xx

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nicolacblue
9 months ago

I am on Tecfidera. I tried Avonex, beta-feron and Rebif. I had a real issue with the Avonex as it was a thick needle. I used the Auto-inject option with it but still couldn’t handle it. I also had the Rebif injections with it’s own auto- inject function but “needle night’ would often cause me distress and quite often cause rather large bruises. I then went onto Tecfidera about 4yrs ago. I can honestly say that I haven’t had any side-effects from it apart from flushing 2hrs after taking it

Hope this helps


nicolacblue
9 months ago

I was also diagnosed in 2007

Nic x


lightning87
9 months ago

I am on Tecfidera. No real issues, odd flush but nothing too extreme. I’d recommend it but won’t know if it’s working until results of my annual mri. All the best x


rmdaniels
9 months ago

I was diagnosed this year & have been on Tecfidera since about March. Just flushing side effect & have done pretty well with it. No new or active lesions as of last month. Best of luck to you!


lpoollou2
9 months ago

@nicolacblue @lightning87 @rmdaniels

Thank you all for your replies. When I was diagnosed at 21 I found that my body recovered fully after relapses. I would get flare ups of numbness if I was stressed or doing too much. However these latest relapses I don’t feel like my mobility among other things are recovering to what they were before the relapse. I have two young children and want to be the best mummy I can be. I was always really nervous of taking disease modifying drugs but now I feel I have to for my quality of life.


lpoollou2
9 months ago

Your experiences have given me hope that I’ve picked the right treatment, so fingers crossed.

@rmdaniels I was only young when I was diagnosed and it too me a long time to come to terms with it, so be kind to yourself. I thought my chance of meeting someone and having children had been taken from me but I was wrong. Just remember everyone’s MS is different and affects them in different ways. I use a mobility scooter and wheelchair when needed because I have really bad fatigue xxx


joholl
9 months ago

I’m on tecfidera same as the other guys, flushes couple of hours after taking them but I find making sure you have eaten plenty before or during taking them helps 👍


amym
9 months ago

Copaxone is 3x weekly now, not every day.


lpoollou2
9 months ago

@joholl @amym

The MS nurse advised taking it with high protein food? Do you find that? When I was on copaxone it was only 3 times a week. I am very needle phobic and couldn’t handle it xx


amym
9 months ago

I haven’t been told about high protein diet. I wondered if it was more frequent last time you used it. Good luck xxx


lpoollou2
9 months ago

@amym

Sorry I meant with the tecfidera xxx


amym
9 months ago

@lpoollou2 ahhhh! 🙂


joholl
9 months ago

@lpoollou2
She might be right though I’ve not heard that although I’ve found egg on toast for brekkie works for me which is high in protein
So long as you don’t take them on an empty stomach you should be ok.
I was really nervous about taking them but All manageable so far x


lpoollou2
9 months ago

@joholl

How long have you been on them? Any relapses?

Thanks for your advice. I’d heard stories from when I was first diagnosed 12 years ago of the treatments being worse than the MS xx


joholl
9 months ago

Only 3 months but I’ve probably had it 3 years I got diagnosed in April, my job is a bit demanding as I’m a regional VM manager and travel a lot so instead of doing crazy hours like I did I’m very good with my time management and rest. Doing that combined with the meds I’m sure will help.
My relapses have both been optic neuritis but like I say I rest when I need take the tablets on a full tummy and stay resilient and positive.
I take vitamin B and berocca every day to boost my immune and nervous system. Try them xx


lpoollou2
9 months ago

@joholl

I was diagnosed at 21, 12 years ago and there weren’t many treatment options. I’ve had 3 relapses in a year, previously they were ever 4 years, one while I was 3 months pregnant this year. It’s unusual to relapse while pregnant so they wanted me to seriously consider DMT. I didn’t want any infusions or injections. So I only had two options Aubagio and tecfidera. I’m 33 and not ready to say I don’t want another baby so the rules out Aubagio because it stays in your system for 2 years. So that’s why I’ve on for Tecfidera. Yes stress and MS really don’t mix but it’s good that you have learned to pace yourself. Optic neuritis in my experience is one of the worse symptoms of MS. It’s so disorienting, I feel like I’m on the outside looking in if that makes sense. Hopefully these tablets will reduce my relapse and accumulation of disability. My mobility isn’t great and a fatigue very easily xxx


shanikablake
8 months ago

Hi I started Tecfidera literally in September – so far so good – this is my first time using anything to control my MS. Side effects minimal – felt a little hot (flushing) but nw the side effects has died down. Try it and see if it’s best for you I would say xx


arbee
8 months ago

It’s almost exactly two years since I started on Tecfidera and so far so good, no relapses in that time and very rarely have side effects these days, the occasional flush or dodgy stomach but only about once every couple of weeks.

It took a couple of months for me to get used to it and I felt pretty sick but nothing too bad, I was still able to work during most of that time. Once I got past that it’s gone pretty well.

Unfortunately it’s not the same for everyone and some people have very bad side effects but I believe it’s quite rare, if you do a search on here for Tecfidera you will see the vast majority of people are happy with it. Good luck 🙂

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