I am new to this forum and just wanted to hear some experiences from other Tecfidera users! (and also off load as I think my husband is fed up of hearing me moan today).
I am typing this whilst having a bit of a cry. I started Tecfidera on Thursday and am experiencing hot flushes to the degree that I look like I have very bad sun burn. I have a constant runny nose and today have had a headache all day and generally feel weak and rough.
I am only on the low dose this week and next week it will go higher.
I am aware that compared to some people’s experiences this is probably nothing as so far I have not had any stomach upsets or pains but am very scared that this is to come.
I have been on leave the past few days so tomorrow will be my first day at work on the meds and I am not looking forward to being there looking like a lobster and feeling like this. (The past 4 days of flushing have not been regular and on one day it was 3 hours before the flush started and on another day it came on within an hour but lasted for nearly 4 hours!).
Ok so moan over.
It has to get better and to be honest if it keeps me well then that is the main thing I guess.
You sound as though you have a fairly high sensitivity to Tecfidera. Presumably you have been taking two of the green and white 120mg capsules each day?
If so, then i would suggest that you reduce this dosage to just one 120mg capsule per day until the side effects you report subside or at least, reduce to a tolerable level.
Once a day means that you could wait until getting home from your day’s work before taking it and thus would not have to await the stares of colleagues as you silently morph into a lobster.
General advice for trouble free Tecfidera taking includes:
have an adult strength aspirin at least 30 minutes before daily dose one; this should significantly reduce your flushing.
if flushing presents itself, take a standard, off the shelf anti-histamine
if any stomach cramps etc occur, take a paracetamol
The most important piece of advice to adhere to, is to take Tecfidera on a full(ish) stomach. It doesn’t matter what sort of food (fatty, protein rich, ten bowls of cornflakes, whatever), and the actual quantity doesn’t really matter, just eat enough so that you feel full. Just eat 80% of whatever, take the Tecfidera and then finish your food.
Make sure you are supplied with the 120mg capsules indefinitely. No one has good grounds to complain about this request; the NHS should be paying the same for both strengths.
Once you are happily taking one a day, step it up to two a day. Continue happily on until taking four a day. Then you might choose to switch to the green 240mg capsules.
I know that the above dosing may not be what it says on the packet, or what might have been said by MS nurses etc… but at the end of the day, we are all different and the instructions you receive are ONLY GUIDELINES.
It should go without saying, that taking a little is better than not taking anything at all. Tecfidera is the best drug out there and is the simplest to administer. Stick with it. Do not let the scenario of ‘too much too soon’ make life more challenging than it already is.
My theory with these tablets as that you want to avoid it dissolving for as long as possible, so I avoid too much liquid with it. I’m also not a breakfast person but have got on really well having good yoghurt (i.e. not low fat!). I get the Onken biopots and they last me a few days, I usually swallow the pill with the yoghurt (having chewed any fruity bits first obviously) I always had live yoghurt to settle an iffy tummy and I believe it’s quite kind to your tum.
I had a shop delivered the other morning so had cereal with milk and the flush was really bad, I was relieved when the driver arrived close to the end of the delivery slot so tho flush had passed by the time he arrived
Dinner is fine the as it’s biggest meal of the day for me.
I had one spare tablet recently as I was sickly, so I chucked it down the loo… it didn’t flush away but I noticed later the the colour had gone and the little pillules inside had all puffed up and it was overall bigger in size than when it started, sort of puffed up. I’m not a scientist obviously but it works for me not to let the tablet burst too quickly. Took with soup once and flush was also quick and fierce that I know your tum needs looking after.
I found that eating a meal before taking the tablets stopped the flushing. When I initially started the tablets I had hot flushes and nose bleeds. This has now stopped but I will still get flushes if I have the tablets on an empty stomach.
my presumed understanding of the whole tecfidera mechanism is this:
the plastic outer capsule is dissolved very quickly once inside your stomach; the pellets of good stuff held within are therefore freed and the ‘slow release’ of the chemicals which forms them begins.
after 3 to 4 hours of gradually dissolving and being absorbed into the blood, dimethyl fumarate (aka the good stuff, aka DMF) can concentrate in the blood to a ‘critical mass’ which can provoke an allergic (beetroot) reaction.
but before this, if the stomach is relatively empty, the stomach starts to absorb the DMF in a highly concentrated patch, which can provoke an inflammation, which in turn creates a sense of nausea and / or cramping.
aspirin and / or anti-histamines have a mechanism to directly counter these symptomatic processes, but the simplest strategy to avoid these unpleasant side effects, is to reduce the ‘concentration’ of DMF entering the blood, by diluting it with good and tasty food being absorbed at the same time.
of course whether DMF is absorbed with or without food, it is still present as a whole in your blood after a number of hours and so you also have to adopt a ‘long term plan’ to give your body the chance to grow accustomed to this new, daily additive to your diet; you need to acquire a tolerance. hence my suggestion of a very gradual increase in daily dosages, over a number of weeks (or even months for the most sensitive).
as said, it is better to be taking a little than none at all, or so much that it causes you side effects which undermine the quality of your life and thus the motivation behind taking it in the first place.
I always take mine with food. I am lucky in that I just get a hot flush about 4 hours after taking. Even this is as and when it feels like it. Some days nothing at all. Sounds like you have some very sound advice judging by this thread. I was told any side effects should reduce after about 3 months. Just keep in touch with your MS nurse and I hope things settle down for you.
Hello. Karen from Austin, TX USA here. I just started Tecfidera yesterday and I’m experiencing the exact same symptoms. My entire body feels like it’s sunburned. Will try the Benadryl and Aspirin to see if it helps. #Prayingforacure
You are currently enjoying the side effect known as ‘flushing’. It can also present as an itchiness or prickliness.
Some strategies to avoid:
Take an aspirin at least 30 minutes before Tecfidera daily dose #1
Take your Tecfidera midway through a meal (not a snack) but a decent plate full (whatever that means for you; no need to stuff your gills!)
As you are just starting Tecfidera, take just one 120mg daily for week one; 120mg twice daily for week two; 3 in week three; and 4 in week four. Once you are happily taking full daily doses, switch to taking the 240mg caps twice daily.
Some strategies to manage this side effect:
off the supermarket shelf (not even from behind the pharmacy counter) allergy / anti-histamine meds;
if painful (or if gastro cramps kick in and they did for me during week three,) take paracetamol
Note, that the flushing episodes can vary in duration and severity, but they do seem to come along about 3 to 4 hours after a dose. So you might want to consider this, if you would rather not risk looking like a beetroot somewhere public. But with that said, such side effects are usually very short lived until you acquire a tolerance to the DMD.
Been on Tecfidera for around 8 months now. Still get symptoms, nothing gets rid of them. Tried all of the above although I do find taking them with just water helps a bit better than with food. My appetite hasn’t been the same since starting these and I don’t eat very much these days. I was previously on Tysabri and it was fab, was on that for 7 years but had to come of it as my pml risk was creeping up. I hate taking tecfidera
I hated it up until the 4 month mark. It’s fine now and as I no longer have an appetite, I’m losing weight. I wonder what the next MRI will show? I have heard of improvements. Here’s hoping…
I had so much stomach pain when I started it and the nausea was dreadful. I felt really ill. I had pills to make me feel hungry and anti nausea medicine. Now, I eat a corn cracker spread with humous for breakfast and dinner. That seems to do the trick.
I’ve been on Tec two years. I still get flushes about four times a week. When I started I found all the advice on here brilliant (especially Paolo) and asked to be on the lower dose for a month (I think).
