oskar 06/02/18
Last reply 5 months ago
Tecfidera

After 8-9 years in a Daclizumab trial (my first drug since diagnosis), Dacluzimab is now licensed. However it is reserved for people, for whom other drugs have been ineffective, and I am not eligible. I have now been advised to try Tecfidera.
Daclizumab is a subcutaneous injection, taken once every four weeks whereas Tecdifera is two tablets per day and I will have to adapt to side effects.
I’m not entirely happy, but I guess the alternative (no meds) may well be worse.
Anyone have any comments or practical advice on Tecfidera?
Thanks.

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sciencegeek
5 months ago

Typically in the UK if you have been on a drug in a trial and it is working for you, you should be allowed to continue to take it. Have you pushed hard for this option?


vixen
5 months ago

Hi there, there are lots of posts about Tec on this site if you write in the search box. I’ve been on it for 9 months with no problems at all, although some people have real issues. I have never deviated from taking a tablet mid-food, and that would contain high fat and high protein. It’s not invasive with regards life style, and you have to be monitored every 3 months. I think most people who do give up on it do so pretty early on. I have another friend on here who has taken it with minimal issues, so good luck if you do go for it!


oskar
5 months ago

Sciencegeek, sadly I haven’t, I tend just to accept what I’m told.
I have an appointment on 26th Feb, so I might enquire then. Thanks


oskar
5 months ago

Thanks for your encouragement Vixen.


fingersandtoes
5 months ago

Yeah fight for it if it was working for you.

But for another good news story I started Tec a few weeks ago and it’s been fine. My only side effects have been imaginary – honestly just a little fatigue I think as I got used to taking it. But that could also be because I recently upped my weekly running mileage. I’m training for my first ultra marathon so it was important to me to choose something that wasn’t disruptive to my lifestyle.

I did eat more food with it for a while, especially for breakfast, but I’ve gone back to my normal eating patterns now (which is still a lot what with all the calories I burn).

There’s a Facebook Tec support group which I joined, and then when it was clear I wasn’t experiencing side effects I quickly unfollowed – I found it full of misinformation and… I hate to say this about people with a real illness… but hypochondria. Everything was seen as a side effect. Weight gain, weight loss, hair loss, wind, you name it.

If you go on Tec, listen to the advice given by the nurse, buy all of the remedies you can for all of the potential side effects, but aside from that I’d say don’t listen to anyone else (including me perhaps!).


oskar
5 months ago

I had intended to start Tecfidera today, or maybe still do. It is now 12.30pm and I don’t expect to start now until after 1pm.
How long do people recommend between doses?
Thanks.


vixen
5 months ago

Hi there @oskar. I think the directions say 5 hours minimal but check the, carefully. For me, I’ve taken once or twice only 6 hours apart with no problems! Good luck!


fingersandtoes
5 months ago

I took my first dose with dinner on the day I picked up my prescription groin the hospital. I think dinner was a good choice as I was eating more food and going to bed after. I made sure there was fat and protein in the meal (something with tempeh and peanut sauce I think). I left it an hour before going to bed to allow dinner to settle.

The next morning I had a bigger breakfast than usual before taking my Tec. I ate in this way for the first week of so, then relaxed a bit when I didn’t get any side effects.

I forgot my pill for the first time today, so now I’ll take my first with lunch and second with dinner. I have an after work meeting so dinner will be pretty late.


californiadreamin
5 months ago

@oskar you should start with them 12 hours apart to keep the concentration in your body as even as possible. Because the dosage tapers you can waver that a few hours but that’s what will keep you the most even in terms of medication.


oskar
5 months ago

Thanks everyone – I have just taken my 1st capsule after porridge and washed down with soluble aspirin. Now the trial begins.


fingersandtoes
5 months ago

FROM the hospital! please excuse the typo… I was on my phone


pikilily
5 months ago

Hi Oskar, pleased to meet you, and to be able to pass on positive news. Not everyone gets bad side effects from Tec..some don’t get any at all.!! Mine have been so mild that I have to question whether its just been in my mind rather than ‘real’. I have had a very slow introduction 120daily two weeks, then 120 twice daily for two weeks, then 120/240 for two weeks, then up to full dose. This is way way slower than the recommended introduction, but my MS nurses did some research and found that this way there is a much lower dropout. Aspirin about an hour before Tec. High fat and protein food with Tec. I also take probiotics to aid the gut. I have found that babybells are great to have at the ready..yoghurt drinks are fab for soothing the occassional gurgly tummy. Peanut butter is used by loads of folk. I will admit I was anxious about starting. And had a box full of counter-remedies.. But I haven’t needed them. I hope this helps a bit.
Emma T


oskar
5 months ago

@pikilily, I have so far had no unpleasant effects and have had 2 pints of beer.
I went shopping today to buy some ‘breakfast’ biscuits and got some peanut butter things – I’m fed up with the porridge rigmarole, so I can now take my Tec at the same time as my other nonsense and progress with coffee and tabs afterwards as usual. Porridge can wait.


cameron
5 months ago

Hi @oskar, hope all goes well, but BTW are you persevering with your French? x


fingersandtoes
5 months ago

Oh well done on the beer Oskar! I was very careful the first few days, also kept a food diary quite obsessively just in case I had side effects or adverse reactions when I had it with a certain food…. Read it back and thought “gosh I spend a lot of time in pubs for someone trying to be healthy!”


oskar
5 months ago

@cameron, yes I persevere with the French. I had been worried about my latest online oral assessment, which I thought I had done badly. Yesterday I received my mark, 63% 😀
@fingersandtoes re. pubs – I enjoy the pub and the sociability. I was/am determined not to deviate simply because of some nonsense that gave me a bit of a hiding 8 years ago.
I used to be pretty healthy, cycling to work every day for about 20 years and running a half marathon every year from c. 1988.
I have accepted that those days are over – time to be relaxed and ‘happy’.


grandma
5 months ago

Hi Oskar, I started Tec 7 weeks ago after 23 years on Beta Interferon. My info only says ideally 12 hours between doses so therefore breakfast and dinner. I didn’t interfere with the timing for the first 3 weeks and have since then played with it a bit more I.e. 1-2 hours added on or taken away and no major disasters so far. I had the expected hot flushes (but as I am a lady of a certain age I got used to these 10 years ago so am well used to them!) also got mad itching a couple of times, but it went away after 15-30 mins. I know everybody reacts differently so keep up the good work and I hope all goes well.

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