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Tecfidera ?

Does anyone have experience of taking tecfidera Was in my clinic today and the doctor mentioned it Though she said that the side effects are quite common And quite severe. Any experience out there ?

just had it mentioned to me today… i posted earlier and got a couple of replies… they have it in scotland and expect to offer it here (england/wales) in a few weeks/months I think

sorry i didnt mean to reply 3 times!

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Dont worry kt2010, i do it all the time,esp on the phone ’

Hi Sorry, no experience of it but I had it mentioned to me this week to by ms nurse too. I am coming off copaxone and have already come off Rebif. If it is made available on the NHS as a first line DMD that would be great. However having suffered from side effects with my other two meds I am concerned about the possible side effects too. I know this is a very new drug but wIll keep an eye on this post for any feedback : ) Thanks for posting Mish x I

I have just been diagnosed with RRMS and my MS specialist has recommended Tecfidera to me. As you said it isn’t yet available in the UK, but it was passed for NHS use last Friday so they should be able to start prescribing it soon.

How bad are the side effects of this new drug, some were mentioned to me but all seemed quite managable.

Max

My MS nurse mentioned it to me yesterday. apparantly we will be able to start using it in November. I am under southampton hospital and I expect hospitals differ.

Hello, I’ve been taking tecfidera for about 3.5 months (since my diagnosis). The only side effects I’ve experienced is flushing. If you take two aspirin about 30 mins before the tecfidera you won’t have that side effect. After about a week I stopped taking the aspirin and haven’t had any flushing since.

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[quote=“Tommy Martin”] Hello, I’ve been taking tecfidera for about 3.5 months (since my diagnosis). The only side effects I’ve experienced is flushing. If you take two aspirin about 30 mins before the tecfidera you won’t have that side effect. After about a week I stopped taking the aspirin and haven’t had any flushing since. [/quote] I’m getting my first tecfidera delivery soon. Do you take baby aspirin or normal dosage? I want to be prepared…

Hi all! I’m new on here so apologies if I make no sense.

I was just diagnosed at the start of this month & am due to start tecfidera in the next few weeks. I’ve been informed about the side effects but was wondering if it is really that severe! Anyone have any experience of taking this? Any info would help.

as with everything, side effects are varied to the individual.

however, (and not from personal experience i hasten to add, as i am yet to start on the tecs) the general advice appears to be: have a full stomach before taking the drugs.

the main sides seem to be upset stomach (both ends, ahem) and ‘flushing’; so aspirin, food, drugs, repeat.

good luck Liv75 and bear in mind, the sides are experienced only in the minority of consumers and then, severe sides are enduring only by a minority of them! the odds are, that for you, these DMDs will be just like taking a daily vitamin tablet. so chin up! :slight_smile:

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Thank you Paolo for the reassurance. Spoke with my MS nurse today & feel more comfortable with the road ahead :slight_smile:

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Hi Liv,

I started on tecfidera a week ago, and so far I’ve been absolutely fine. I felt a little nausea the first day but after that ok. So keeping my fingers crossed.

Hi Live.

I am in the same position as you apart from I won’t be starting Tecfidera until January because my husband and I are on holiday in Tenerife in early January and didn’t want to risk not being well over there though I might be fine we meet a lot of friends when we are there and I didn’t want to spoil there holiday.As copaxone remains in your system for 3 months my ms nurse agreed with me to wait.I am a bit scared of the side affects of Tecfidera but my nurse says they can me medication to help with them and I believe the secret is to take it on a full stomach.I believe in staying positive for my husbands sake.

I wish you good luck and please let me know how you are.If you want to keep in touch please feel free to send me a pm.

Annex

Hi

just agreed with MS nurse to start Tecfidera in December. Hope side effects will fade after a few weeks. Good to be getting it so soon after approval. It’s flying off the shelves in the USA I am told. Keep chatting so we can find the best way to manage the side effects. BJ

Hi Colum & Liv I started Tecfidera last Friday so have only had 4 days of the half dose on it so far and am due to go up to the full dose this Friday. Before starting it my consultant said take it with fat. I looked at various blogs from USA and several said the same. So I started off having it in the morning with one slice of toast with spread and peanut butter and a bowl of Oat so Simple. I have a normal lunch of sandwich & yoghurt followed by evening meal containing fat - beef lasagne for example. So far so good. A little flushing on day one about 4 hours after pill and same on day 3 but it only lasted about 40 minutes and was barely noticeable. I’ve now stopped the porrage in the morning as I felt too full. I haven’t had any gastric issues at all. Fingers crossed it stays this way when I increase the dose. Will let you know. I keep Gaviscon at the ready as advised by consultant for possible acid reflux and 75mg dispersible Asprin in case I start to get more heavy duty flushing etc as advised by MS Nurse but as I said I’ve hardly had any side effects at all. I exexpect there are more people who talk about their bad experiences than those who get along fine with it! Some say their side effects kicked in more after week 3 so I’ll just have to see but will let you know and give you any tips re overcoming them but I’m staying positive for now.

I have adopted the Swank diet (i figure why the hell not?) and so eating a fatty meal is not an option for me. One might argue whether consumption based on a high proportion of fat is ever advisable… but the full stomach advice to negate the gastro-side effects of tecfidera is widely touted.

My MS nurse has proposed the very gradual introduction of tecfidera stating that the commencement of DMD’s is an individual thing and one that needn’t be hurried into. So to enable a nice gradual accumulation of the good stuff in one’s system it was advised:

  • week 1 - 2 x 120mg
  • week 2 - 1 x 120mg + 1 x 240mg
  • week 3 - 2 x 240mg

​i am already on a regime of daily aspirin and so with imodium at the ready, i am anticipating an easy start on my tecs over the next few days…

New member, first post! Don’t not do Facebook or twitter or all the things my teenage girls do, but thought I’d have a chat with some like minded folk! Names Ben. Diagnosed about 2 1/2 years ago with RRMS. Not of real interest but looking back over my football career (played for Everton for a few years) when told people / the hospital I couldn’t feel my legs they just told me I had bad blood circulation! 42 years old now, having been diagnosed via a fall on the ice necessitating an MRI scan, things thankfully so much more advanced and so much more encouraging.

i have been having treatment via the Walton Centre in Fazekerley. Anyone who knows it will agree this is a really exciting place. I am on a monitoring scheme by the university students who attend here seeing how they can help improve our way of life. Done the usual steroid blasts a few times to help move each relapse on. But their support is great!

I have a reasonably pressured job as a Finance Director of a large local business, but whilst my closest peers and friends are aware of my condition, I have been able to keep the visible evidence down to the bear minimum with their help.

i suppose I joined this forum though to talk and ask about Tecfidera. I have discussed treatment often with my consultant, but to this point we have said “let’s wait for the next big relapse”. But I’m seriously considering this treatment. I know there are lots to consider, but being a girl when it comes to needle treatment this sounds attractive.

Given my very brief background story, if this resonates with anyone close to my circumstances I would love to hear your views, experiences, advice, etc.

cheers all

Ben

hiya ben

welcome to forum!

alistair hignell wrote a book that may be of interest to you? its cricket not football related but… its available on amazon to get gist of it.

i am female, like darts (to watch, not play) have had ms several years… this forum is a good place to pick all sorts of info!

maybe best to start ur own thread introducing yourself?

ellie

Hiya Ben - welcome to the forum and Danny Wallace (ex Southampton / Man U) has MS and gave a few good interviews about MS… Good luck on your MS journey, I have had MS for nearly 15 years and on copaxone, doing pretty well and often travel over to Liverpool from Northern Ireland to watch the Redmen at Anfield, even been to Goodison a couple of times as well…