Last reply 4 years ago
Tecfidera – advice please

Hi, just looking for some advice please. I know it’s only early days but I took my first Tefidera this morning and within two hours I felt terrible. I felt really sick and then began having hot flushes. I know these are common side effects but wasn’t expecting to feel so bad. I don’t want to give up on the first day but I’m scared to take my next tablet. Does anyone else take it and how long do the side effects last?

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stumbler
4 years ago

@tash41 , it’s funny you should ask this question as I know someone who started on Tecfidera on Monday.

Within a couple of hours, she lit up like a strawberry flavoured snowman. This is the “flush”ing side-effect. It might be a tad uncomfortable, but it’s your body’s reaction to something that it hasn’t experienced before.

Bear with it as it should improve as you go along…….


tash41
4 years ago

@stumbler – thanks for this, it sounds just like me earlier today. My reaction seems quite normal then. I will try keep going with it. Thanks again.


lucinda
4 years ago

Hi Tash41,

Im the one who lit up like strawberry flavored snowman! I started on Sat, the flushing has got better with Me! Let me know how you get on, it’s nice to know others out there who are recently on it.

🙂 x


tash41
4 years ago

Hi Lucinda

It’s good to hear that things are improving for you. My stomach problems have been bad too but hopefully all will start to improve soon. I don’t want to give up already. Will keep you posted of how it’s going. Thanks for your reply. X


lucinda
4 years ago

Hi Tash,

Sorry to hear you had stomach problems too, I’ve been quite lucky with that but I do have a very heavy feeling in my stomach, like when you’ve eaten a huge meal! Feel full all the time!

I’m sure it will improve over time. are you on the assure trail? x


curlyclaire
4 years ago

@tash41 I posted about this a couple of days ago ‘top tips anyone’ I started Tecfidera on 01/11/2014 had initial flushing, nausea and stomach cramps. However I have had no side effects for the last 24hrs so fingers crossed.

Taking straight after a good meal has helped. I have also been taking with yoghurt (advised on here) in the morning which hasn’t done me any harm. I find peppermint tea good for the stomach.

Some people find the side effects last 4-6 weeks, I am hoping mine was 3 days…..that is until the increased dose I’m sure!

Keep going with it if you can and hopefully the effects will subside.

Good luck

X


tash41
4 years ago

Hi Lucinda,

I’m on any of the trials. Feeling full must be hard when it’s best to eat with them. I hope you continue to feel well on them.

Best wishes x


tash41
4 years ago

@curlyclaire I had the same side effects you describe. But today I feel better than yesterday. Hope the side effects are short lived for us but I am nervous about upping the dose! Thanks for the tips I shall give them a go. Good luck to you too and hope all goes well. X


lucinda
4 years ago

Hi Tash,

Yeah feeling full is abit annoying but I’m very good with my diet and I know for a fact I can’t be full. I am pretty strict with my diet and live on healthy protein shakes and meals, and always have a shake 1 hour before my tablet is due. This is my 5th day and 2nd day no side effects! 🙂

I have had old symptoms flare up but Neuro saw me this morning and has said it’s just the Tecfidera attacking the damaged nerves which is triggering off old problems- he said it’s a good thing- shows it’s working really well, a tad nervous about sat when I up the dose though, I’m soooo numb but they have mentioned steroids if it gets really bad.

Hope you’re doing okay, let us no

x


curlyclaire
4 years ago

@tash glad you are feeling better fingers crossed . I’m sure the increased dose won’t be as bad as we are all thinking. We can do it!:-)

@lucinda this my 5th day and 2nd day no side effects too! Good luck for Saturday! Glad the Tecfidera is working. Hope you get your feeling back soon, but steroids do work a treat! 🙂

X


tash41
4 years ago

@lucinda – Glad to hear it’s working well. I have been much better than my first day but still feel occasionally sick but I can cope with that. Good luck for tomorrow. let us know how the increased dose goes. x

@curlyclaire – good luck for tomorrow with the increased dose, let us know how you get on. I think eating yoghurt is a good tip as it seems to stop my sickness feeling, so thanks for that. X


ruggermad
4 years ago

Hi Everyone

Can I ask if any of you are in England? Only asking as I am waiting for my doctor to write my prescription for Tecfidera and i’m not sure if it is available in England quite just yet. Either that or my Doctor has forgot all about me!!!!! Again……………..lol


tash41
4 years ago

@ruggermad – Yes we are in England. I have been told that most people will be offered this drug by the end of November so you should be prescribed it soon hopefully. Maybe best to contact the clinic you are under to chase it up in case they have forgotten about you!

Hope you get sorted soon.


ruggermad
4 years ago

Thank you Tash41. Muchly appreciated.


irish88
4 years ago

Hi everyone!!

I started tecfidera in August, had some stomach problems like cramps and feeling bloated and full and the odd headache. Those side effects lasted about three weeks. I’m the first person my neurologist has prescribed them to. I feel great now and have no side effects


lucinda
4 years ago

Hi all of you tecfidera people!

It really hurts my hands writing individual messages on a key board!

@Irish88- that’s exciting you were the first on this drug- and nice to know only lasted 3 weeks!
@Ruggermad- the end of November is nearly here :)- The only reason i’m on tecfidera now is because I am on a side effects trial.
@Tash41- Hope you are coping well and the side effects have got a bit better
@CurlyClaire- How are you doing? Still No side effects? have you upped your doze?

So I’ve upped by doze today of tecfidera and also my pregablin, I’m feeling a bit dizzy and sicky and my stomach feels heavy. My flushes have been ok the last few day but I am suffering with headaches! I’m so numb!! My Neuro said its the drugs attacking my damaged nerves which is triggering off old problems but it shows it’s doing a good job! feeling very numb down one side 🙁 just hope it gets abit easier soon!

Take care all of you x


curlyclaire
4 years ago

@ruggermad Tash41 is right they are getting through everyone. There are a lot of people either going on it as first treatment or swapping to it.

@tash41 how’s it going? You eaten your own body weight in yoghurt yet! 😉

@lucinda hope you’re ok? I found when I was on pregabalin it made me dizzy, hopefully the increased dose (pregabalin) will help with your symptoms. Keep on at your neuro/GP if they continue though. I started increased dose today had some flushing, itching and stomach cramps, but not as bad as last time and no nausea which is a bonus. Fingers crossed!

Sending good Tecfidera wishes! Thinking of you all x


lady-caroline
4 years ago

This post has been so useful! 😀

I’m due to start Tecfidera in a few weeks and have planned to take a little time of work while it settles in.

This will be the first meds i will be on and I’m actually really excited! I think i will feel a little more confident day to day.

I will make sure and eat when i take it, I’m lactose intolerant but I’ll just have to have chocolate soya pudding to line my tummy 😉

My Neuro did say i can take Imodium for gut troubles. The hot flushes may be welcome in this cold weather lol. She also said that by the time she plans to bring my dose up the the full amount i should be used to it by then… I’m also one of her first patients on this so I guess it all bit trial and error still.


j4s0nftw
4 years ago

Hi there! I’ve been on Tecfidera for a couple months now. I got almost all the symptoms, but the biggest thing for me was the flushing… it felt like an extreme sunburn on my whole body for about 30-40 mins… at night i would just go outside when it was cold and that would help a lot… but it kinda sucked when i took my medicine in the morning and i was at work… it does go away though. every once in awhile i feel it coming, but it doesn’t stay long. Id rather have this than giving myself injections like i was.


lucinda
4 years ago

Hi Tecfidera people!

@LadyCaroline – I am glad that these posts have helped you! I feel the same. This is my first drug and I’m pretty happy with it, I managed to carry on pretty normally, sun burn flush like what @J4SONFTW mentioned and a bit sicky feeling, I started the higher doze only yesterday, side effects are fine now, I’m just having numbness (which no-one else seems to have, but all my MS symptoms are saying hello at the mo!!) heavy in the stomach and headache, nothing I cant handle 🙂 I also have a soya protein shake an hour before my drug and I haven’t had any stomach cramps but I am on a blind trial for side effects so I am either on aspirin which could help with side effects or not, only when I stop this trail I will notice. Keep in to touch with us and let us no how you are doing. x

@curlyclaire I think you may be right the pregablin- could be making me a bit dizzy- I am going to persevere with it all though, I used to be on gabapentin and It made me so sleepy and this one doesn’t. wishes to you x

Tecfidera Wishes! x


tash41
4 years ago

Hi everyone,

Pleased to hear that people have found this post useful. I have found everyones different experiences and tips really useful to read.
My side effects are much better but I still have itching and sicky feeling but nothing too severe. I go on to the higher dose on Tuesday. Good luck to you all about to start the treatment and to everyone already on it, hope everything settles down and it works well for us all! X ☺


graham100
4 years ago

I have come off rebif, about to start copaxone until can got on tecfidera now my ms nurse has just told me this. (Well we did try!! But found the whole process very trying!!) Great thanks for trying.

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