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Tecfidera and food: Info gathering

Seeing as a number of us are going through the learning process with Tec and food at the moment, I thought a specific thread for that might be handy, to save trawling through all the others looking for relevant comments :).

With my 1st dose today I had 2 slices of wholemeal toast with Marmite. This is the first time I’ve had toast without a fatty addition (other than the Clover on it) so I was interested (and a little nervous) to see what would happen. It didn’t give me any problems, per se, but I have had quite a bit more flushing and prickling today, than previously.

So I think I’m going to stick with an oat-based cereal with added fruit/nuts/seeds and plenty of milk (semi skimmed). Unless I have scrambled egg on toast, didn’t have any issues when I had dose 1 with that.

Maybe tomorrow I’ll try just 1 egg on 1 slice of toast, and hope I don’t live to regret it! When I had it before I smeared the toast slice with smushed avocado and scrambled 2 small eggs, so a goodly amount of fat to cosset the Tec there.

For my dose one, i generally have four slices of whole grain toast with jam. No margarine or butter as i am on the Swank diet.

I then neck a Tec with a gulp of coffee and then have two more slices.

For dose two, it might come at about the 75% complete stage of my evening meal. But more usual, is my taking it right at bed time when i brush my teeth. this is whether i am hungry as hell, or full to the gills with tasty oat sodas :slight_smile:

No specific food types are included nor excluded at all (aside from that dictated by the Swank diet).

The only occasion i gain ‘prickliness’, is about four hours after dose one, usually indicating that it is time for lunch. Whether i obey this hunger or not, the prickles last a hand full of minutes and are never extreme nor do they manifest in flushed pink skin.

In a nut shell, taking this drug successfully is about the quantity in your belly, more than what is in your belly.

Do you think I’m going to be pushing my luck with just one piece of toast and a scrambled egg tomorrow, Paolo? I could have some fruit with it too…

So far I’ve not had any gastric problems with the Tec, just flushing and prickling, so I’m hopeful that if what I eat isn’t enough to contain the Tec then the only negative affect would be a larger amount of prickly pinkness. Of course I might end up with horrible cramps or something, but I do have paracetamol onhand if that happens.

I’ve had the best results with cheese. I’ve now mostly stopped taking 'tec number 1 with breakfast, instead I have it with lunch, ie half way through a cheese sandwich. That way I can have a much smaller breakfast, typically a banana and/or low fat yoghurt. I now only rarely feel nauseous or have any other side effects. I then have dose 2 in the middle of dinner, whatever that happens to be. This way I can easily have my lunch together with my husband. When I was trying to take the tecfidera with a bigger breakfast, I then had very little for lunch, partly because I was less hungry an partly because I don’t want to end up the size of a blue whale!!

Its really a case of trial & error, whatever fits with your tastes and lifestyle. I personally wouldn’t be able to eat 6 slices of toast in one go regularly without putting on a ton of weight but that’s because I’m female and have a very sedentary lifestyle. I also love food too much (ie I’m greedy) to be able to waste all those calories on bread!

I’d give the egg & single slice a go. If you get side effects then go for aspirin/paracetamol etc.

Sue

I am hesitant to suggest definitive amounts of food.

We are all different and so if you are used to eating 500g or 5kg of foodstuffs per meal, it would be impossible for any authority to make recommendations with regard to quantities.

I would simply suggest, 75% full. No need to pig out just to avert the potential for side effects.

Also, and at the risk of stating the bleeding obvious… if you have found something that works for you, stick with it :slight_smile:

I take my first tablet at breakfast between a bowl of cereal (with semi skimmed milk) and a Muller fruit corner yoghurt (full fat). I sometimes have a bit of an upset stomach after breakfast but nothing too serious. Like Paolo I get flushing about 4 hours after my first dose. This usually coincides with lunchtime so I tend to need something in my stomach around that time too. I take my second tablet during my evening meal, whatever that happens to be.

Overall, apart from adding a yoghurt and semi skimmed milk (rather than skimmed milk) to my breakfast routine I don’t feel like I’ve needed to change my eating habits.

I’ve been taking Tecfidera 240mg for about 3 months. I’m not currently taking any additional meds. I did initially try junior aspirin for the flushing but it didn’t seem to make any difference so I stopped. I haven’t had any cramping for a few weeks now. Fingers crossed that remains the case. Buscopan helped when I had cramping in the early weeks.

I didn’t try the single slice of toast and one scrambled egg experiment this morning, in the end, brain wasn’t willing to make that much effort. So bowl of muesli with added cranberries, almonds and dried apricots instead, plus a decent amount of milk. No flushing and prickles later like I had with just toast yesterday. Got plenty going on right now though, so go figure, lol.

I’ve been on Tecfidera for 3 and a bit weeks, and have had flushing after nearly every single dose so far but thankfully few gastric side effects. Wary of the problems it could cause, I’ve been taking it with fatty/proteiny breakfasts and then just my normal evening meal. I’m not naturally a breakfast eater, so morning food has been hard work, but I’ve been managing with toast and PB/hard boiled eggs and toast/greek yogurt with fruit and nuts. But this morning the children had eaten all the bread and fruit so I took it with a bowl of Special K and milk, and do you know what? It was fine! Yes, I flushed, but no worse than any other day. I’ll try it again another day and see what happens. Downside of Special K was that I was hungry mid-morning though, whereas I had been snacking a lot less I think due to a more substantial breakfast.

Haha yeah, Special K’s a totally failure at filling you up, isn’t it!

Have you considered taking your first does with lunch instead, if you’d rather not have breakfast? Often it’s around lunchtime when I take mine, even if I’ve been up for quite a while and eaten previously. Some days I’ve just had fruit salad for breakfast, so I’ve taken the Tec with a sandwich (wholemeal bread, soft cheese and salad) around lunchtime, had no ill effects from doing that.

Yup nothing states you must take dose one at brekkie.

It simply says two doses must be at least four hours apart.

Also, an aspirin should help reduce / avoid the flushing. Pop one of those 30 minutes before dose one.

Yeah, I know I could take it at lunch time, but I already have food issues and this is a good way of re-training myself into better eating habits. I really should get over the Special K though!

Paulo, I’ve tried aspirin but it just doesn’t make enough of a difference to justify taking it. I have antihistamines for the extreme flushes, but tbh they are getting less intense now so fingers crossed they 'll tail off completely. Although if this is the worst side effect for me, I’ll take it, thanks.

Well done with succeeding with eating breakfast again then :smiley:

Sorry for derailing your thread!

You’re not, no worries!

Well damn, just realised I forgot to take my 2nd tablet with my tea : / So just taken it now. Fingers crossed that it doesn’t do something nasty to me in a couple of hours!

Might need Paolo and his oat sodas to settle my stomach? ;D I had to google that, wasn’t a term I’d ever heard before xD

How did it go?

Went ok actually! I got some heat in my belly and was afraid it was going to become something horrible, but a bit of heat was all it amounted to. So far, it seems I might have got lucky with the Tec. :slight_smile:

That’s good news!

i think the thing is with tecfidera (and no doubt most, if not all, DMDs) is getting your guts and gooey bits acquainted to what is essentially a new dietary supplement.

these drugs are fairly hardcore chemicals and not in one’s natural menu of grazing. like drinking an oat soda for the first time, it will be an acquired taste. And so your belly just needs to adapt and adjust its ‘taste’.

once there however, you will for the most part, be on easy street. that’s how i look at it anyway… :slight_smile:

I suppose overall I’m just lucky that my body didn’t react with outrage at moving to the higher dose after just 1 week, I was pretty nervous about that as so many of you had a more gentle introduction to the full strength.