Start Tecfidera today :)

Everyday living
1

Well today’s the day. After waiting around nine months, I have picked up my meds and am about to start Tefidera today :slight_smile:

I have been reading through everyone great advice about taking it but am a bit confused (doesn’t take much!) The advice I was given was to take tablet an hour after breakfast…have most of you tried that and found sandwiching between breakfast best?

Also, It was suggested taking a high protein breakfast like eggs but would you say porridge works just as well if not better?

i have been given a months supply of 120g and one month of 240g but I think I shall be following the gradual increase route, rather than two 120g for a month then jumping up to two 240g…makes sense to introduce something like that slowly…like I did with Gabapentine. I have also been warned that side effects peak in week three then again a couple of weeks later before easing off. However not sure if they meant on lower dose or higher dose. Being my third DMD I shall cross my fingers for side effects passing quickly! :slight_smile:

Thank you if you can help with my questions, I know there has already been many about Tecfidera lately but it is a bit scary with my previous side effect problems.

mish x

2

Each person has different regimes and side-effects… what works for me might not work for you.

In the morning I am having a bowl of cereal then 1 slice of toast - take tec - then another… I think porridge is good

Dinner time I eat most of the dinner and take pill… (eating whatever i want)

I tried alcohol and it gave me bad stomache so gonna stay off it for another few weeks and try again…

I would definitely recommend slowly increasing to the 240g

My side effects were minimal on the 120g dose (flushing) - but I had bad GI issues after 4 or 5 days of taking the 240g…

Persevere if you can - I did and now getting minimal GI issues - flushing still occurs but its just a warmth and red skin…

I also using Omeprazole 10mg 1hr before i take the morning dose and 1hr before evening dose which I think is helping my GI issues… There are plenty of other remedies etc you can take for GI issues…

The flushing doesnt bother me but some people use asprin before the Tec…

Hope this helps :slight_smile:

3

Hi,

I always take my dose straight after my breakfast. I usually have a bowl of shredded wheat and then 2 slices of toast. Then my Tecfidera dose. I then have my 2nd dose straight after my tea. I usually have around 9 hours between the doses.

I haven’t altered my diet at all. The main side effect I suffered was the flushing but it generally only lasted around 30 minutes.

You are lucky that you have been given a months supply of the lower dose.

Hopefully you won’t suffer with the side effects.

Good luck

4

Thank you for your replies :slight_smile: especially advice about diet.

Ooh hoping alcohol is not effected!!!

Makes sense to increase slowly, I am suprised that it does not seem to be the norm. Sounds like it could help people stick with it. This is my third DMD so I am so hoping I can beat the side effects this time. I stuck with Rebif for six months but three days a week I was in bed at least 16 hours before I could move! My work changed my hours to fit around this but it wasn’t until I gave in and stopped I realised how poorly it had made me…bit unlucky really! Copaxone was great but lipoatrophy dents saw me having to come off that so this time…fingers crossed!

5

Dear Mish… from my experience, for what it is worth…

I take my tecfidera with my two main meals of the day (ie. those that fill my belly the ‘best’). The specific time of the tecfidera taking, comes at about 75% through the meal. (Kind of like between the main course and dessert so to speak.)

this gives a substantial ‘bed’ of grub in my belly, before the narcs go down, and then they get blanketed by a bit more grub!

this helps to stop the stomach upset (at either end).

whether the food in question is high in fat, protein, carbs, mars bars or cheese and onion crisps, it matters not one bit. eat whatever you usually eat, just ensure to eat more than a snack!

Dose graduation i think is important and i am relieved that a longer period of lower dose is starting to become the prevailing advice. So good for you! Considering the capsules you have been provided, i would recommend:

Week 1 - one 120mg capsule daily

Week 2 - two 120mg capsules daily

Week 3 - one 120mg and 1 240mg capsules daily

Week 4 - full dose ie. two 240mg capsules daily.

To aid in flushing / blushing / itching… take an aspirin half an hour before daily dose #1. If these side effects still crop up, pop an anti-histamine. Anything painful like stomach cramps etc, a paracetamol sorted them out for me in no time.

And finally… as for booze… do not change a single thing! Life is tough enough as it is without having to forego your favourite tipple as well!

Cheers and let us know how you get on! good luck with it all!

6

Hi thanks Paolo…I saw your reply to another post and think it’s a very good idea…and shall be trying it that way :slight_smile:

However, one tablet in, the postie arrives with a letter to say I have an MRI on Monday for brain and c spine! I was expecting it but not so soon…only had blood tests back for kidney function yesterday too! Soooo, thinking that I was feeling sick and possibilities of a dodgy tummy after a few days, thought it best to start again after scan! Don’t fancy lying there for an hour or more feeling bad.

So now…Monday is the day :slight_smile:

Thanks again for your help

Mish x

7

hi mish

good luck with your MRI.

as i have had about 4 MRIs i’m now a seasoned hand!

the sounds of them have changed and sound less like metal dustbins clanging and more like a spaceship!

so i thought about space travel in a fantasy day dream starring professor brian cox!

start planning your daydream now!!

carole x

8

Hi Carole

Thank you. I had two scans before one brain then had to go back for spine.

Last time I felt like I was an extra in a Star Wars movie …but daydreaming about Professor Brian Cox sounds a lot better than CP-30! Lol :slight_smile: This time they are doing brain and c spine together so will have around an hour to dream away.

Mish x

9

good luck mish

hope your day dream is so delicious that they will have to wake you up!

carole x

oh and ask them to put something under your knees because i can’t keep still with my legs straight.

10

Thanks I hope so too :wink:

First scan with contrast though…would it be wrong to ask for red wine to be pumped in as an alternative? :slight_smile:

mish x

11

this is a good plan!

everybody will be wanting an MRI!!

12

I always thought MRI machines sounded like The Chemical Brothers or Daft Punk, in concert.

13

paulo

yes they do sound like the chemical brothers.

hawkwind is another one.

hubby is a big hawkwind fan, shame he can’t have the MRIs instead of me.

carole x