Forum

Tecfidera

Dear All.

Two years of symptoms and eight months after my first MRI scan and I am finally diagnosed with relapsing remitting MS. I am in a bit of a muddle, since they cannot find an ms nurse close to my home (I have been advised to write to my MP?), but as soon as they do find one, the neurologist wants me to take Tecfidera. I have read a little about taking it with food, but am a bit scared of the possible side effects. Any advice welcome and do I need to get time off from work to begin it?

Thank you as always for your brilliant support. Ali x

hi ali

tecfidera will be easy as long as you eat before taking it.

i found it best to take it midway through a meal.

it’s when you start the higher dose in week 2 that side effects are likely to occur.

you probably won’t need time off work but it’s as well to be prepared for week 2.

the flushing is ok but not a look i want in public.

i go bright orange and look like something from TOWIE!

haha, look out joey essex!

you’ll be fine.

carole x

Hi

I also have rrms and was diagnosed 2 1/2 years ago.

I didn’t qualify initially for dmt’s due to limited relapses.

I was given a pack from my MS Nurse which gave easy to read info on the various drug options.

I chose Tecfidera as it had one of the highest % of increasing time between relapses.

i started it in December 2017 and the only side effects I had and still get occasionally were flushing in the face and upper body (feels and looks a bit like sunburn) and stomach bloating (not too bad but just enough to annoy).

a bit of a coincidence but I had an MRI scan with contrast dye this morning to see if I have any active lesions.

hopefully I don’t as I am quite happy with Tecfidera and If I do I may have to look at alternatives.

I have never had any time off work since my diagnosis but I too was worried about side effects.

For a whole year I kept a log on my phone of exactly what I ate at each meal and took the tablets during my breakfast then again at evening meal. It was more for my own piece of mind really and after a year I just stopped recording as I was doing well on it.

i was originally told by my nurse that I should take it with protein and fat but after a 6 month check up with my consultant she intimated that as long as it’s food it should be fine.

to be honest now I eat anything and everything when I take it and feel exactly the same.

obviously I wouldn’t want you to base anything around my experience as you’ll find your own way but try not to worry too much.

also listen to your nurse when you get one as mine has been fantastic.

All the very best.

Dear Carole and Jacobia, thank you for your responses. It is always brilliant, coming on to this forum and getting replies that you know you can trust. Warmest thoughts Ali x

Patience, I’m bemused by the notion that you need an MS nurse in place before you can start on a DMD. Whatever for? Many of us started our first DMD before MS nurses were invented! (Me included - Avonex in 2000.)

It seems to me important to get on a DMD ASAP to give you some protection against relapses. MS nurses are wonderful, but they’re not magicians - DMDs work whether there’s an MS nurse there or not. Is it that your neurologist just can’t be bothered doing the DMD paperwork or something? Surely not. Or is he/she in a different part of the country from you and therefore not in command of prescribing DMDs in your area? There must be something I’m not getting here - or else what you’ve been told doesn’t quite make sense.

Alison

1 Like

Dear Alison,

I think that the neurologist’s are working well but they are under so much pressure it seems. My first neurologist left his post (mis-diagnosis) and my second one is out of county. I think that I am in a bit of a loop and have been told that a local MS nurse is needed to monitor the drugs, and that I don’t qualify for his, out of county MS nurse. I have also been told that my county are not taking new referrals? However, the neurologist has just written a brilliant and pleading letter to my local neurologist imploring that his local services/MS clinic start my treatment asap. He has copied in my GP too and I am seeing my GP today and will ask that she chase it up. Hopefully it will get resolved soon.

Thank you though for your concern. I always love the advice that I get from this forum. Warmest thoughts Ali

I started on Tecfidera a few months ago. I obviously read up on it prior to starting so I knew to take it with food - which I still do (mostly). Now and again I do get flushing but i can’t honestly say it’s due to the Tecfidera - might be my age. Other than that i’ve had NO side effects at all…EVER. Hope you have a smooth ride with it. Juls

I am glad that you have good people on the case, doing their best to make stuff happen for you. God speed their efforts!

Alison

As others have said, take halfway through a meal.

I’ve been on Tec since the start of November and have had 2 instances of flushing - one when I first started taking the tablets and a second episode after a rather stressful conversation…

Both episodes were helped by taking an antihistamine and having a lie down (I am fortunate enough to be able to do this at the moment)

Good luck - there is so much help, information and support on this board.

MrsFlute

Thanks for all replies. Can I just ask, is anyone else struggling to find services in shropshire? Ali