Last reply 6 days ago
Tecfidera

Evening all,

Just joined this site. My wife is about to start treatment for RR MS that was diagnosed last week. From the options presented we have decided on Tecfidera. Although we are aware of the side effects from the material already out there, I was wondering if anyone has any recent experience (good or bad) to share on this?

If the comment is likely to be really bad can I ask that this is sent privately (if this is possible?) as I would rather not scare others.

As a demographic, my wife is late 30s and only started showing acute symptoms in late March 2018.

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sophia_gaston
2 weeks ago

Hi 🙂 I’m 23 and have been on Tec for just over a year now. Its been a pretty mooth ride for me luckily minus hot flushes/upset tummy if I don’t eat enough with my doses.
Other than this I have gotten back to my normal self like I was pre first episode and hopefully at my next MRI at the end of September I will see no new activity.
Good luck to you and your wife, I hope she has as easy a time as I have.


seb80
2 weeks ago

Sophia_gaston Thanks!


glawsdan
2 weeks ago

Hi @seb80

Start Tec two years ago. Had a hot flush 6-7 hours after taking the the first (120mg) dose which did concern me knowing that I was going to go to the 240mg dose sooner afterwards. However, it was nothing to worry about….. 2 years in, ocassional mild hot flushes and never had any stomach aches.

All the best

Dan


stumbler
2 weeks ago

Hi @seb80 and welcome, your wife is lucky to have you for support.

Your original post above has had some tags added, in grey/yellow. If you select the “Tecfidera” tag, you’ll access all the previous posts about this Disease Modifying Treatment (DMT).

All DMTs are powerful drugs, with a risk of manageable side-effects. This risk has to be weighed up with the risk of what an untreated MS can do to someone. Sometimes, it’s a case of “better the devil you know, than the devil you don’t”!

Please feel free to ask any questions, which may help you and your wife.


kesley89
2 weeks ago

Heya, hope your wife is ok? When you first find out, it feels like the worst thing in the world but I promise you adapt and it gets better! I’ve been on Tecfidera for a year and a half now and I’m going to be honest the first couple of months were pretty hard but now there’s no real symptoms at all apart from what some have mentioned above but all I can say is make sure your wife has just a crazy amount of protein based foods when she first takes it (like tuna on toast, protein yoghurts, bananas) Just which the medicine settles as otherwise it can really give you a painful tummy 🙂 give her our love and tell her there is lots of support if she needs it!


andreiac
2 weeks ago

Hi,

I’ll copy/paste a comment of mine addressed to someone else:

“I live in France and I started Tecfidera 2 years and 3 months ago. I still have some stomach symptoms from time to time, but they’re rather marginal. Back when I started the treatment, indeed, the stomach symptoms were terrible. But I (almost) completely managed them by taking Aspirin. I began with 500 mg only in the morning, 15 min before Tecfidera. Than I decreased the dose to 250 mg Aspirin, after 2 weeks. After 2 more weeks I was taking 100 mg, only in the morning. I continued with this dosage for some months, and my metabolism started to habit with Tecfidera. Form more than a year I put Aspirin aside. And the treatment is completely mute, in terms of symptoms. Thus, Aspirin was decisive to combat side effects in my case.

Another advise is to take the treatment of Tecfidera ~30 min after your meal.

I also have to tell that my lymphocytes never decreased below 1600/mm3 (only once, three months after starting the treatment). The rest of the time they remained around 2000.”

I wish you all the best!


lightning87
2 weeks ago

Hey
I’m recently diagnosed (June 2018) and decided to start Tecfidea. I start on 23rd September when I come back from holiday. So I can’t comment on side effects (yet) but just wanted to say all the best for your wife and starting treatment.
x


vixen
2 weeks ago

Hi @seb80, have been on successfully for two years now. I reiterate the importance of taking with a balance of protein and fat, and to take in the middle of a meal. There are lots of tips on here if you type into the search box. All the best to you both!


robb
2 weeks ago

Hi I’ve been on tecfidera for 2 1/2 years and I have to say I must be one of the lucky ones because as long as I eat with it I don’t get any side effects, hope this helps 🙂


daveo
2 weeks ago

Hi

I’ve had a similar path to your wife – I’m late 30s and was diagnosed after an episode in March. I’ve been on tecfidera for two months. I’ve no negative comments. I have a mild flush most days about 5 hours after the morning pill. It was a bit wierd at first but I’m used to it now and it lasts for no longer than 30 mins. I’ve had no stomach problems or nausea.


pulcherrima
2 weeks ago

Evening to you,
I also started on tecfidera in May this year. I was really, really scared how it would be like… I actually thought I would spend like 3 month kneeling in front of the toilet and vomit all day.
But: I reacted very well on tecfidera. Just had a queasy feeling after taking the first three pills and exactly after 4 hours there was a hot flush, that turned me all red for about 20 minutes.
Now I just sometimes have flushs and those are way softer than the ones in the beginning.
When I was diagnosted, I started with rebif, later plegridy and have to say: tecfidera – for me – is the most pleasant MS therapy so far.
Just try not to be afraid and keep in mind, that it will help you, when you have to take your pill and don’t get nervous, if any byeffect comes up – it’s okay, it’s normal and it will pass by.


pulcherrima
2 weeks ago

…all the best to you and your wife!! 🙂


seb80
2 weeks ago

Well, thank you everyone for your replies and kind words. @stumbler thanks for the tip regarding searches, I’ve already found a lot more information this way, including those who have not had such a great time with Tecfidera. But ‘knowledge is power’ so this is all appreciated.

I’ll keep scanning the pages and forums and no doubt will be back with other questions in the future. Good luck to all of you out there.


grandma
2 weeks ago

Hi, I’m one of the old codgers,I’m 62′ started on Tec at the start of the year, usual side effects as predicted In the first few weeks, all fine after about 8 weeks, fine since, always try to eat very close to tablet time, seems to work fine, usually relapse 3 times a year, 2/3 of the way in, nothing so far, so seems to be working, but will reserve judgement till the end of the year.


fingersandtoes
2 weeks ago

How, I’m also late 30s, started Tec early this year. My breakfast is home made granola with loads of nuts and seeds, once I ran out and used commercially made granola – that’s one of the only times I got flushing. The other time was when I had a very very minor infection.

I actually got a bit of stomach pain last night which was maybe a side effect, maybe just indigestion. When I was first getting started on Tec I had the loose stools. But after being so worried it was a relief to realise the side effects were really nothing I couldn’t handle.

The nurse gave some good advice: for nausea eat Haribo (I have the vegetarian equivalent), flushing take aspirin, and stock up on Imodium and IBS meds just in case. I think I’ve taken Imodium once and aspirin twice. I keep a side effect kit at work.

I have my first MRI with contrast this Friday. I hope I can stay on Tec. I wouldn’t be surprised if there was some inflammation going on though – work is stressful and my mum is staying (extended stay), so my self care has taken a hit just due to not having any time to myself.


fingersandtoes
2 weeks ago

That was meant to say Hi! Also wanted to add I’ve forgotten to take it a few times (especially being out of my routine with Mum here). If I forget and it’s more than an hour after dinner I take it with a Kind bar and it’s fine.


sarahd72
2 weeks ago

Hello, I have been on Techfidia for almost 3 years. My first six months were a bit rocky. Had to stay on the low dose for a few extra months before I could move up to the higher level dose because it made a mess feel very nauseous. However with some good advice on eating with the tablets especially in the morning, which included having a larger breakfast than my normal and using full fat milk until it settled down. Didn’t help my weight but that is now under control and thankfully no relapses since. Good luck with the treatment.☺


dannibrett
2 weeks ago

Hi and welcome to yourself and your wife!
I’m on week 3 of Tec now; I’ve had a few hot flushes (usually if I have glass of wine after my evening dose!) and a few stomach cramps but nothing that’s needed symptomatic relief.

I wish her the best!


fraction
6 days ago

Hi @seb80

It’s great to hear that you’re supporting your wife through this. I’m pretty new to this site myself and just came back to reply to comments on a post I made about a month ago, but saw your post before I got the chance.

I am very newly diagnosed myself; I was only definitively diagnosed earlier this year without having ever previously suspected I had any health problems. I suddenly had optic neuritis and it all went downhill from there. The diagnosis was all very quick and a huge shock, so I joined this site in the hopes I can find fellow MSers – and it’s nice that I actually for once have a chance to mention Tecfidera as I now have experience on this drug.

I started Tecfidera about 5 weeks ago and was warned about a ton of potential side effects, namely gastric ones. I guess I haven’t been on it for that long, but I can safely say I am yet to have any problems or side effects. I take it twice a day, sometimes morning and evening, other times after lunch and before bed. Sometimes I just take both in the evening, but with 5 or more hours in between. One day I even accidentally overdosed and took them only two hours apart, but I still had no problems. (I called the doctor’s and they said to only go to hospital if I begin to feel unwell). I’ve even taken it without a meal before – and still I was fine. When I first started taking it, I would just sit there, feeling fearful and waiting for side effects to kick in, but they never did.

I’d say the only thing that was affected was my mood (though I’m reluctant to believe it’s a direct result of the Tecfidera). I just found myself feeling really sad and teary all the time, but I think it’s because beginning to take Tecfidera made the MS feel more real – as I previously said, it was all just very quick and inevitably, a lot to take in. I also have a science background, so I have an in-depth understanding of how this drug works in the context of the immune system, so it was playing on my mind a lot.

You’re more than welcome to ask me any questions you think may help your wife. I still feel quite upset about taking it twice a day, but never having any side effects is always a comfort. If you need background info, I am a 24 year old female.

Hope that helps and best of luck to you both,

Fraction

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