between 9 and 10 - I am getting the major stomach cramps and nausea
I am having stomach tablets and anti-sickness throughout the day (and paracetemol now)
The morning dose doesn’t have this big effect on me… Maybe I am eating too much and this is causing problems (although listening to people eating lots is good)… I would have thought it would be the other way around worse effects on morning than at night…
Any ideas why? and what can I do?
I don’t want to give in and start taking just 1 tablet as maybe tomorrow will be better… but its really bad the effects at night!
You have had success, albeit limited. Bear in mind that with tecfidera, there are no rules aside from ‘no two doses within four hours of each other’.
What works for me, may not work for the next guy, nor the next guy. For example, i would never take tecfidera on only two bits of toast. I go for a six slice minimum! For you, it works, so go with that!
You have to make a choice given your experience thus far and the limitations and preferences of the life you lead.
Some thoughts you might consider:
take dose two at lunch (after 1pm if brekkie is at 9am) assuming it is lighter than your evening meal.
take dose two at bedtime (assuming you go to bed before 5am) - not so good if your side effects are bad enough to wake you up.
is dose one tolerable due to the anti-nausea pills you pop during the day? - i.e. is the amount being eaten not an indication of what works for you?
is dose two intolerable due to all the pills you pop during the day? - i.e. might you reduce your pill intake to only taking them as a reaction instead of precaution?
Stick with it; you are close to a winning formula!
Hi all, I’m on my 6th week of Tec, I haven’t had any of the issues discussed, I’m lucky, I take mine with a litre of water 9am and 9pm. Having breakfast at 7am, dinner 5.30pm. However I’m having severe groin pains. Any ideas? Thank you x
i really dont know anything about groin pains - i think the only issues i know about are GI and flushing… maybe someone else knows or maybe speak with MS Nurse.
I’m about 7 weeks in. I stopped taking Buscopan for stomach issues at the beginning of week 6.
I take my first dose of Tecfidera with breakfast and then my second dose with my evening meal. I still sometimes get some cramping/nausea In the early afternoon but that seems to be worse on the days I haven’t eaten a decent sized lunch. Snacking, but not eating properly, almost appears to trigger the cramps/nausea.
Flushing has had a bit of a resurgence for me. Somebody asked me if I was pregnant today because they thought my red face was a ‘pregnancy glow’. Ha ha!
I start week 9 tomorrow. I take 20mg omeprazole first thing in the morning (to last for 24 hours. My neuro said that it’s OK to take long term and that some people have been on it for 30 years! He suggested that I could try a day without it and see how that goes. Not happening anytime soon though…)
Occasionally a touch of nausea, but it goes within minutes. I have some Motilium and can take one of those if I really feel the food isn’t moving along my digestive system.
I also have Buscopan and can take this for cramp. As well as painkillers - one paracetamol plus one Paramol (usually my painkiller of choice as paracetamol alone has never done anything for me. I have to watch it with the Paramol though as it has codeine in it which is constipating and I notice the difference on only two tablets a day.
So I’ve been pretty well prepared - side effects, but nothing too awful and I can cope with it. However yesterday and this morning I’ve had quite bad stomach cramps which surprised me. I’ve been having the Tec with plenty to eat (as per Paolo!) and today I’ve resorted to most of the above meds. Funnily enough it’s easier this afternoon - after painkillers this morning, Buscopan lunchtime, and then a good lunch. Weird.
I should add that everything was run past/suggested by my neuro.
Spluff, personally I don’t care what I take long-term as long as it’s safe and helps. That is how it’s going to be with Tec, and I take various other meds. I do feel like my house is a pharmacy sometimes though!
I’m going to be starting on Tecfidera soon, as an interim treatment between Tysabri (which I was “unresponsive” to) and Lemtrada. I saw my MS nurse on Tuesday and she says I’ll be sent the meds through the post after being called by the people sending them. Not had a call yet, if I don’t hear anything this week I’ll shoot her an email I think.
Reading through this thread makes me a little nervous, got to say, lol. Not least because the MS has had quite an impact on my appetite, and eating more to try and offset side-effects is going to be a bit/lot of a trial. But from what several of you guys say a decent lunch is a must, so might be a good idea for me to set a timer for myself to remember to actually have lunch, I think!
I often only have 2 meals; it can be several hours after I’ve got up before I eat anything; around about the time of the 3rd cuppa before breakfast actually happens, then some fruit or a small carby thing during the afternoon, then a meal some time in the evening. So the Tecfidera’s going to force quite a change in eating habits on me, isn’t it, nothing like having to learn a new routine when various brainbork makes being able to manage existing stuff a problem <:D
I’m really glad my brain finally let me sign up on here though, I’ve been wanting to for ages, but one of my issues is executive dysfunction; so wanting to do something, and actually doing something, can be goalposts that are very far apart, sadly, but the message was finally allowed through, so yay
Hi I sometimes i’m late getting up or busy first thing in morning. I take my Tec tablet sometimes 10.30 - 11am with brunch, which is often porridge with omega 3 seeds mix, a banana, apple and nuts. I might have something small to eat around 2.30 - 3pm and then evening meal around 7pm when I take the second Tec tablet.
Lenney’s comment makes me realise I’m getting myself into a bit of a flap over this. I’m forewarned now though, so when I start on these I’ll make sure to have some lunch, and see how things go with regard to cramps.
You say you have two meals per day; in which case you are all set. Take the tec with your grub.
The actual meal times do not matter one jot, as long as they occur at least four hours apart from each other (which for a light eater, i presume that they do).
Just make sure to start GRADUALLY. i.e. just one 120mg cap daily for week one, two daily for week two, three for week three, then full dose in week four.
Just an update - ive had 10days symptom free - Ive started eating porridge first thing before my first dose - not sure if thats the reason but im sticking with it for the time being…
I actually now feel like myself again, i have my appetite back and cheerful People around me noticed my change, loss of weight and looking like crap
Porridge is great! Not if you don’t like it though, of course I add mixed spice,seeds, nuts and either chopped apple or various dried fruit to mine, and it’s delish.
I add mixed spice,seeds, nuts and either chopped apple or various dried fruit to mine, and it’s delish.