Was on rebif, taken off been put on the list for tecfidera. When it’s available here?? Going onto copaxone in the mean time,
Hi Squiffy, Tecfidera is now available in England. I have just been told I start on 9th December. I live in South London if it’s relevant.
Special hello to Ben. I was diagnosed at 40, now 51. Was very sporty. Fell over three times in the first mile of a marathon, then couldn’t run or pee !
i’ll let you know how the drug goes
BJ
Uf you’re on Facebook there is a tecfideria page ireland and UK. It’s really good and the members are lovely. …nit like those of this forum 
I’m possibly changing to this med from rebif. Like you I was worried about side effects but that fb page has provided reassurance re this. Think it’s like with any meds side effects are possible and can be severe. I would recommend joining. Good luck with your decision xxxx
Lisa. Thanks for the tip. Just joined the tec page you suggested. Exactly what I was looking for. BJ
I switched from Avonex injections to Tecfidera just this week. I took one tablet and my side effects were severe. I knew about the flushing but it was very bad, i looked like i had severe sunburn and my whole body was red and blotchy…later that night my symptoms worsened, my throat felt like it was swelling…turned out i had a bad allergic reaction to tecfidera. All in all i had a terrible experience with it and i want to make others aware. I’ve arranged a new Avonex delivery haha
Hi everybody
Tecfidera is available in Northern Ireland most of this year. I have been on it for 3 months for RRMS, and the only noticeable side effect i have encountered is a prickling face and neck after about one hour after I take it. This only lasts for about half an hour and passes without notice. This for me is really not a problem. I also take a 75 mg Asprin with my morning dose which I think keeps side effects at bay. However, for me, I have made the mistake on occasions, of tacking Tec without first taking food and this has resulted in significant heartburn. If a good meal or breakfast is taken first then I don’t experience any heartburn.
My conclusion about taking Tecfidera is that I don’t actually notice any health Benefits whilst taking it, however I have to respect my Neuro & MS nurse and general guidance when they say it will slow down the progression of MS and reduce relapses.
hope this helps as I had the same concerns before I committed to Tecfidera . Finally, I have not had to change one thing in my life since starting the treatment
warni
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Did you have to wait for the Avonex to be removed from your system before starting the tecfidera?
Did you try anti-histamines to combat the side effects you suffered?
How much tecfidera did you take to get such a severe reaction?
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Hello everyone, I’ve been taking Tec since December last year.
I’ve previously used Avonex and Copaxone but didn’t get on with them.
I must say that my life has totally changed for the better since taking tec. More energy, less fatigue and some of my ms symptoms are going.
I cannot call it the wonder drug because I still have bad days …but in my opinion thats ms and not tec
There are side affects taking tec. flushing, stomach problems to mention a few, but these go away after a few weeks.
Tec is a very expensive drug and \i consider myself lucky being able to take it.
My experience is very positive!!
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Hi I’ve been on Tec for a couple of months. One week at half dose 2x 120mg and 2x 240mg ever since. I just make sure I eat before taking the tablets. A few episodes of slight flushing but that’s it. I don’t take aspirin. Good luck hope it goes smoothly for you.
I’m on Tecfidera now as well - after many years on copaxone - bit of nausea at the start and occasional flushing but going smoothly enough and no more injections (DV)
Hi everyone, i have just joined the forum today after being diagnosed nearly 3 years ago.
I have just started with Tecfidera (my first treatment), 1 month on 120mg and now on 240 for the last week and a half.
I have experienced slight flushing and a warm feeling rather than hot flushes.
The main problem i have found is stomach ache, not all the time, some days are OK. I have changed to full fat milk in the morning with my cereal but when i eat at lunch time that’s it - bad stomach, bloating and unfortunately this had ended up as diarrhoea (hence the reason why i am working from home today). I will often feel this way after i have eaten in the evening as well.
I found that my symptoms were more obvious just after a week of starting and now a week after upping the dose. The stomach ache and bloating is manageable with a wind relief tablet but i just hope the diarrhoea doesn’t last long as i cant take Immodium (definitely get the side effects then!). Hopefully the side effects will go away after a little while.
Update.
Started Tec on 7th Jan. all good. bit of flushing but nothing serious, much better than injecting. My MS nurse has told me that 75% or 80% of people are like me and do not have much of a reaction. The other 20% have a harder time getting used to it or a few have to stop. Well worth trying though as if you are in the 80% its the easiest DMD available.
my neuro discussed the possibilities of moving on to this drug from copaxone. odiously im going to do my research as in reading up on it but whats jumping out to me is the need to have food before taking this. my problem is i dont eat anything on a morning. sometimes its mid afternoon before a have food. is this going to be a problem if i do move onto this tablet?
no, well, I am in the same position, hate big breakfast usually start the day with Cappuccino +some fruit muesli then Tec, or take it after lunch, again not very big, main meal in the eve+ Tec again.
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the rule is general, not universal; most people find no / fewer / lessened side effects when tecfidera is taken 75% of the way through a good sized meal. some barely even need a snack to get through with zero side effects.
but with that being said, no where does it demand that daily dose #1 is taken in the morning. the only rule, the ONLY rule is not to take two doses within 4 hours of each other.
if you prefer to have ‘breakfast’ at midday (and i know how that feels) then do so. just make sure dose #2 isn’t likely to get necked before 4pm.
be aware though, that this time release drug is optimally dosed if taken every 12 hours. if you are able to do this (and very few people are) then wonderful… if not, well don’t let it keep you awake at night
good luck with what you decide.
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I was diagnosed in July this year and started treatment 2 months later. I have been on Tecfidera for 3 months…I have had hardly any side effects. I am not a big breakfast eater. A bowl of cereal and a banana and that’s it with my Tec in the morning, and a normal dinner in the evening. I have my breakfast between 06:30-07:30 and my dinner between 18:00-19:30. These times seem to work really well, as my side effects have been minimal. I get some nausea intermittently (maybe once a week?) but this passes quickly. I find that if I have something with a high sugar content (full fat coke) the nausea disappears really quickly. On two occasions I have used an anti-emetic to combat the nausea. I’ve not had any vomiting or diarrhoea, or hot flushing…these are the most common side effects.
However I have had a severe case of gastritis which they did think was a side effect. This has happened four times. It was honestly the worst pain I have ever been in, however, once it had passed it was like nothing had ever happened.
I had my first review the other week and they are really please with how I am responding, my energy has increased significantly since starting the Tec.
Hope this helps for anyone looking to start Tec, there are a lot of negative side effects but I’ve been lucky and not had them…you could be the same!
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i was in the minority of people who get severe side effects.
i was vomiting like billy-o for the first few days on the higher dose.
however, i persevered and just a couple of weeks later, the sickness stopped (HURRAY!!!)
i wish i’d asked for longer on the lower dose but it all worked out well.
i absolutely do not miss stabbing myself wih copaxone (or self harming as i called it).
definitely helps to take your tec halfway through a meal.
kind of trap it between two lots of food.
be happy because this is a very effective drug and it will give your ms a good kicking!
carole x
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I have been on it 7 months. It has caused severehair thinning and quite frankly wacko dreams. It also, causes weird emotional states. Consider all your options. Easy to take, but I am still not convinced it is best. I do not have before and after results yet.
Emotional curves, wacko dreams, hair thinning
Hair thinning emotional curves wacko dreams flushing