Hi,
I’ve just started on Tecfidera and I am getting all the side-effects; bad flushing, bad stomach, my balance is worse and the one I really don’t like, not feeling with it. Should I stick with it or reduce the dose i.e. take one low dose a day for two weeks and then go onto the low dose proper. I have a feeling I am going to feel really bad when I go up to the high dose next week.
What do other people think?
Thanks,
Adrian 
If you’ve just started (today?) then stick with it! I had the flushing for about 30mins day 1, 2 and 3 then nothing. Second week, up to higher dose, stomach cramps day 2,3 and 4 then nothing.
I don’t do breakfast so have tablet one at lunch. I “sandwich” it between my meal. For instance sandwich, tablet, then yoghurt or something like that. Second tab evening meal, same thing, half way through my food. Or you could have that later before bedtime to avoid feeling any side effects. Make sure stomach is full and drink a decent amount of water.
Just adding this recent thread. Lots of similar info. Good luck.
Hey welshboy. search these forums for advice. but in a nut shell, if this DMD is simply making you feel worse, take it steady.
week 1 - one pill daily
week 2 - two pills daily
week 3 - three pills daily
week 4 - full dose
have an aspirin 30 minutes before your first daily dose. make sure to always take you tecfidera 75% of the way through a good sized meal (whatever that means to you). food type and quality do not matter anywhere near as much as quantity.
if cramps come along, take a paracetamol
if flushing / prickling etc occur, take an anti-histamine.
stick with it! this drug is the best first line option out there and the side effects ought to be easily manageable and short lived if you follow the above.
good luck!
Hi Adrian,
Just a thought…but…do you think your dislike of taking medications could in any way make you more aware of the side effects?
What i’m trying to say is…the more aware we are of the possible side effects - the more we over think things. Depression can also make us do this.
You have only just started the treatment and you sound defeated already. Give Tecfidera a fighting chance as from reading your other posts - you must be only a few days in.
I’ve been on Tecfidera 19 months. My ms is stable. I am happy with that. I still have the flushing now but it is a small price to pay to know it’s holding off my relapses.
We are not taking sweets here! DMD’s are bound to have side effects. I choose to grit my teeth and put up with the flushing so i can remain as relapse free as possible and to hold off disability as long as i can.
On the other side of this - i remember talking to you quite a long time ago when you started Rebif and you couldn’t tolerate it. Hopefully you are being closely monitored by an ms nurse because some people are just not very good with medication.
Speak to your health team before you decide anything about your dosage - the experts know best about this. Your side effects sound normal to me though and you need to keep as busy as possible to keep your mind off those side effects.
I hope you don’t take my reply in a negative way. I am trying to be helpful. Every time i flush like a tomato - i think ‘take that ms’.
I have persevered with the side effects and 19 months down the line - i am so glad i did. I am feeling much better and after a very bad time before Tecfidera - i am starting to feel much more positive about life.
Good luck and best wishes
Teresa.
Hello,
I’ve been taking this for 6 weeks now. First 3 were vile - full smorgasbord of side effects.
I’ve persevered and now have the flushing most days but am otherwise pretty good.
I’m pleased I kept going because benefit of drug is worth it!
I’ll try it but I’ve never had a tablet, yoghurt sandwich before. I’ll give it a go though. It’s the second day. I felt like a beetroot, nausea, stomach cramps. I don’t really mind them. It’s the not feeling with it that I don’t like. I’ve had that with all three medications so far. Rebif was the worst, I felt awful. I couldn’t function.
I have decided to stick with it. I’ve taken my evening tablet about two hours ago and haven’t had any symptoms so far.
Hi Teek. It has nothing to do with that. I can take all the physical side-effects you can throw at me but I draw the line when I can’t function. What is the point of that. Flushing doesn’t bother me at all. I look like I’ve been in the sun all da. That’s no big deal.
With Rebif, it made me feel really, really awful. I stuck with it for two months but I had to give it up. I’ve been on my own regime for three years and it has worked really well. I had a really horrible relapse four years ago where I had 15 different symptoms. II haven’t had one eof those since. I only get one relapse a year now when I get a cold. That’s it and they are not particularly severe ones. They are exacerbations of existing symptoms. I would prefer that than not being able to function.
I certainly know that that they are not sweets. I know what they do and what the side-effects may be. You can find dimethyl fumertate in furniture polish apparently, so it’s bound to have some pretty horrible side-effects. Isn’t it?
I am going ot bear with it and see how it goes. I had a mole removed on Friday. So, maybe having six stitches in my back doesn’t help.
Thanks,
Adrian
I’m sorry you feel unable to function on medication. Some people just can’t tolerate the ms medication at all.
Have you checked with the health team that your ‘regime’ can be taken with Tecfidera? All the herbal things you take might affect the side effects you are experiencing.
By the way - dimethyl fumerate in furniture polish is a completely different mixture of substance than Tecfidera. It is manufactured in a completely different way. Just wanted to put that straight so you don’t scare anyone new to Tecfidera.
Good luck with the Tecfidera and i hope your mole removal heals soon.
Best wishes
Teresa
Dimethyl fumarate (DMF) is the methyl ester of fumaric acid. DMF was initially recognized as a very effective hypoxic cellradiosensitizer.[2] Later, DMF combined with three other fumaric acid esters (FAE) was licensed in Germany as oral therapy forpsoriasis (trade name Fumaderm).[3] Other diseases, such as necrobiosis lipoidica, granuloma annulare, and sarcoidosis were also found to respond to treatment with DMF in case reports or small patient series.[4] Phase III clinical trials found that DMF (BG-12) successfully reduced relapse rate and increased time to progression of disability in multiple sclerosis (trade name Tecfidera).[5][6]DMF is thought to have immunomodulatory properties without significant immunosuppression.[7]
In a non-medical use, DMF was applied as a biocide in furniture or shoes to prevent growths of mold during storage or transport in a humid climate. However, due to incidences of allergic reactions after skin contact the European Union banned DMF in consumer products since 1998, and since January 2009 the import of products containing DMF was also banned.[8]
Extract from Wikepedia. So, I imagine that is why it has such side-effects. I’m not trying to scare anyone Teresa. I’m just showing you that they aren’t sweets. I’m pretty sure that everyone who is considering taking Tecfidera knows the possible adverse effects of the medication such as PML and if they don’t, they certainly should do.
Thanks,
Adrian
hi adrian
you will be seeing your ms nurse every 3 months to monitor the tecfidera.
please discuss with her/him before you stop taking your tec.
i had horrible side effects but perseverance paid off.
carole x
Hi Carole,
I’ve already spoken to my MS nurse. I wasn’t thinking of stopping, I was thinking of keeping to a minimal dose for two weeks , then going onto the low dose for one week and then on to the stronger dose afterwards.
I’ve decided to persevere and I’m glad that I have, as I feel quite a lot better this evening. I took a paracetamol with the aspirin before taking the evening tablet. It seems to have done the trick.
Thanks,
Adrian
Obviously from the reply you have given - you have taken my response in a negative way.
I was trying to help, so i will leave the thread as i wasn’t looking for an argument.
I still send my best wishes but would like to add - Wikepedia is a really bad place to get information as absolutely anyone can go on there and change the information to absolutely anything.
T.
well done adrian!
Hi Carole,
Thanks for your positive and non judgemental feedback. I very much appreciate that.
Have a good day.
Adrian
Ok. Thanks for your input Teresa. Have a nice day.
I get bad flushing with Tecfidera and I’m a year down the line - not all the time but on Saturday night - my arms and head were burning and red - but I popped a couple of paracetmol and it usually eases…
People swear blind that one should listen only to MS nurses for drug advice. It is true that they have certain (theoretical) insights, but i personally value far more, the practical experience of those popping the same pills. And thus, in the spirit of this:
If your ‘theoretical expert’ immediately recommends full dose in one or two weeks, they might not be your ‘best friend’. If they specifically recommend fatty or protein rich foods, they might be wasting your time. If they insist that you simply stay the course for three, side effect filled months before then quitting and finding an alternative drug, then they might care more about ticking boxes than your well being.
What i have learnt from nurturing an addiction to Tecfidera over the last 18 months:
you will need time for your body to grow accustomed to this new, dietary, foreign substance (aka positive poison). I strongly recommend the dosing schedule stated in post #5 of this thread. if at anytime, your side effects are not resolved with the actions listed below, simply reduce the daily dose to that of the previous week. (i think one pill daily for two weeks is ultra conservative, but hey… we are all different in our sensitivities).
Always take the pills mid-meal. (unless going to sleep immediately after, but this is expert level tecfidera taking; stomach cramps at 3am are no fun);
An aspirin before dose one = flush avoidance
paracetamol = stomach cramp cure
anti-histamine = flush / prickles / itch cure
And that is all. just take your tec at least four hours apart; ideally 12 hours apart… but don’t stress if this isn’t feasible. You might also notice that any side effects, IF they do arise, will do so around 3.5 to 4 hours after a dose. So if you get past the four hour threshold, you’ve made it!
good luck. soldier on. it is a doddle!
Hi Paolo,
Thanks for that. I’m getting the same side-effects as when I was on Rebif and Copaxone. Completely not with it. I’m having problems typing and thinking straight. I don’t know, maybe I am just ultra sensitive to medication. I wish I wasn’t. I really want to go back to work.
I’m going to try your regimen for which I need a new prescription. I’ve been in touch with the nurse but she hasn’t got back to me yet. I’ll just plod on for now.
Thanks again Paolo.
How are you getting on now Adrian ?
I started on one 120mg a day on Tuesday. From the first day I have been completely foggy, falling asleep about half an hour after taking it (in the middle of a decent lunch as I don’t do breakfast). Then yesterday, day 3, had first real flush about 6/7 hours after taking it. I can’t tolerate aspirin so can’t take that before it. Today have felt super fatigued and generally itchy. Almost didn’t take one today about half an hour ago, but have bitten the bullet and waiting to see what happens. Piriton, fan and ice packs at the ready.
In fact, it is starting to kick in already. Vision is a bit blurry and brain not working. Legs, feet and hands getting tingly/pins & needles.
Has anyone else had this kind of reaction ? It’s not listed as a side effect. And this is only a quarter of the full dose !