Forum

Joined the Tecfidera Army

Hi all,

Just been to see my pleasant MS nurse who went through all the facts about MS and the drugs…

Decided to go for Tecfidera after Paolos et al advice :slight_smile:

I was told that about 20% of people at my local hospital has stopped it because of the side effects and that 90% have had varying forms of side effects… Im expecting something, but hope it wont be too bad and that will be able to manage… if not may try the once every 2 weeks injections that are new…

Got my bloods tested and was told I will be checked every 3months for the first year and every 6month after… is this okay?

Will be about 3 weeks before i start - hoping that my MS will be kept under control…

May the force be with me…

Cheers

Good luck Spluff - I had a few days with an upset stomach, halfway through my 1st month on the 120mg and going to move up to the 240mg next week - has been going well for me - good luck…

congrats brave warrior!

it is likely you will get some kind of side effect; this is after all a fairly significant drug being introduced to your body in fairly significant quantities, for a very sustained period…

but it is not likely that the side effects will be severe (if you take adequate remedial action) or will last for very long.

the key points: aspirin, full stomach, gradual GRADUAL uptake of the drug.

it is upsetting to hear that 1 in 5 people quit due to side effects. but i would bet each and everyone of those people were taking the 100% dose by the eighth day, some of them possibly on an empty stomach! shudder

we are here for you if you get anxious and when the flushing / blushing / burning / prickling begins!

be happy! you are soon to begin fighting the good fight!

oh and the frequency of the blood tests is completely standard. no worries there at all.

unfortunately i can only take the lower dose drug for the first week… i expressed my concerns but was told thats how we get them… so hopefully the rise after one week wont be too hard…

I only had one week on the lower dose.

I didn’t experience any more side effects than I had been getting on the lower dose.

Just make sure you have had plenty to eat before taking the higher dose.

Try not to worry about increasing the dose.

when we talk about plenty to eat before - do you eat and wait a while before taking tablet or just straight after?

im wondering what i can have for breakfast as I usually just have a bowl of muesli (trying to be healthy!) and havent got time to make cooked breakfasts etc

Iv’e been on Tecfidera for 32 weeks now.

I have always had my usual diet. I’ve not had to change my diet at all.

Bran flakes/fruit for breakfast then the tecfidera straight after - washed down with water and a coffee.

My advice would be to eat normally and then if you experience side effects then change your diet to see what works best for you.

I have never taken the Tecfidera on an empty stomach. I think thats the main thing to remember. If you have a ‘delicate’ stomach and are sensitive to the meds then you will soon realise if you need to eat something more substantial.

My evening tablet is taken straight after my evening meal which can be anything from a bowl of soup to a full roast dinner.

You will soon find out what works best for you.

I just have my cereal and the pop the Tecfidera…and immediatly after my dinner…

Hi spluff

I am now on sixth week only experienced a few stomach cramps and some flushing first week now OK.

I was delivered same as you first week low dose then full dose after that but I was worried about starting high dose so quickly so I contacted my nurse to ask if I could take just 1 of the higher dose tablets daily for a further fortnight she agreed which I think it has helped my body get used to it easier.I am now on full dose with no problems.

I have a boiled egg and toast in the morning take my tablet then have another slice of toast so you are sandwiching the tablet with food helps to stop you being sick.toast and soft cheese is supposed to be good aswell .

I hope this helps a wee bit I wish you good luck and try not worry.

Annex

sounds great :slight_smile: will maybe add my morning slice of toast to have after my muesli…

many thanks for all your comments and will update once I have taken…

I feel quite lucky that I have had quite a few options which I guess was not available before.

Thnx

2 Likes

I haven’t changed my diet either.

I have a dish of shredded wheat and the two slices of toast. Then i take my morning dose.

I take my 2nd dose after my evening meal. I usually have around nine hours between my doses.

This seems to be working for me.

Hope it works for you.

when taking tecfidera, for brekkie i have four slices of toast, the tecfidera, then two slices of toast. job done.

my second daily dose i take whether i have eaten or not, or i’m as drunk as a lord or not, when i go to bed.

one point to note… if you have neither the time nor inclination to eat substantially in the mornings (and this preference is not at all rare) then simply postpone your first daily dose to lunch time.

the only restriction on dosing, is to keep them 4 hours apart. dose 1 at lunch at midday means dose two can come as early as 4pm!

good luck!

I started on Wednesday morning. I’m most grateful for the fantastic advice from Paolo and everyone on here, and I also joined the UK & Ireland Facebook group which is very helpful. From all the research I did (know it’s very early days, but still…)this is what I’m doing:-

  1. The hospital issued mine as one week lower dose and then the higher dose. I found out beforehand so I asked to have the lower dose for a month, then the higher dose. The MS Nurse ran this by the Neuro and it was fine.

  2. On the handout from my hospital they make several helpful suggestions which back up the other advice. So, I take 10mg of omeprazole 30 minutes before the tablet (breakfast and dinner time). The hospital recommends a ‘fatty meal’, however I’m doing Slimming World so I’m counting the amount of fat. For breakfast I have hard-boiled eggs with a level tablespoon of Hellman’s may (for the fat), then the tablet, then some fruit. I could have a full-fat yoghurt but wouldn’t then have the mayo. For dinner I just eat what I normally eat, have the tablet, then have some fruit afterwards.Not really any fat in the evening meal but I just wanted to see what happened. I’ve been conscious of the need to eat plenty!

  3. No real problem. Had one flush on Wednesday morning which was actually pretty amusing as I looked like I’d had a week on a beach somewhere very hot, without using suntan cream. It wore off, and was a bit itchy. I do however take Fexofenadine/Telfast for hayfever at the moment; a once daily dose, and this perhaps protects me.

On the FB group it’s all very positive. I was pretty worried about it but determined to give it my best shot so fingers crossed for us!

Louise

it is good news lou62. i am very happy for you.

i wouldn’t get too hung up on the advice regarding high fatty foods.

i am on the swank diet which permits pretty much zero fat and so i don’t have the luxury of following that advice. if you enjoy your spoon full of mayo to help the medicine go down, then of course that is awesome. but from my experience, it is not essential.

i suspect the fat content simply helps to coat the stomach lining so as to help dampen any gastro upset. but if you have a full belly anyway, that is enough.

as with your allergy pill consumption, i already take daily aspirin. (since heart health and stroke risks became the ‘cause celebre’ it is the prevailing wisdom that everyone should do this anyway.) i think this helps with the ‘flushing’ aspect of tecfidera. interestingly, at least once every two weeks, i get a sense of prickles all over my face, always 3 hours following a dose. it is little more than amusing.

i hope your success continues and before you know it, it is simply part of your daily pill popping regime. just like taking yer vitamins (and aspirin!) :slight_smile:

Thanks Paolo. Interesting opinion about the fat and makes me wonder about the coating the stomach lining thing, as I’m having the omeprazole before the Tec anyway.

Trying an experiment today as it’s a weekend: I’m going to take by Tec at lunchtime instead of the morning. Living dangerously…

Loise

Paolo I keep reading that if everyone in the UK aged 50 to 65 took a baby aspirin for 10 years, 130,357 cancer deaths could be avoided over two decades.

It is very confusing about aspirin as when I do a Google search the advice is it can cut cancer by a third. Those who have known heart problems aspirin can be beneficial. Then it goes on to say healthy people should think hard about taking aspirin as harm can outweigh the benefits.

the attitude over here in canada is people (all people) should take a daily aspirin.

by and large, we humanoids eat crap and sit a lot. blood turns to treacle and aspirin is virtually taken as a dietary supplement to help undermine any less than desirable consequences of this.

there might be a handful of negative consequences aired by some authorities, but frankly, i suspect few are as detrimental as heart attacks, thrombosis and stroke…

but i am by no means, in any way, shape or form, a medical expert on any of these topics; i am just a humble consumer sharing his attitude in the hope that someone explains to me the error of my mentality :slight_smile:

i sleep late on the weekends (when the dog allows it) and so my first dose is more or less at lunch time anyway. it works well on a well rested stomach (especially given the ample hydration from the night before).

and then dose two is also usually taken on a hyper-hydrated, saturday night belly… immediately before a face - pillow impact.

how did the change in ritual work for you Lou?

Thanks for asking Paolo. It was OK having it at lunch but I am trying to stick to breakfast time just because it’s easier for me.

Last night I found out that I’d run out of omeprazole so took a Ranitidine tablet before dinner (also on the hospital’s list) as happened to have some (was recommended a while back for something else but can’t remember what). Took that. My stomach was complaining somewhat and I felt a bit sick (still ate my dinner though but with less enthusiasm than usual. And had to take the Tec so thought I ought to eat.) Fortunately it wore off by bedtime.

This morning I took Gaviscon (which we always have in) with breakfast and Tec. Seems to be OK so far.

Louise