NEWLY DIAGNOSED - First week on Tecfidera

New diagnosis and before diagnosis
1

Hello,

This is my first post having recently been dx with RRMS. I was hoping that I could get some advice from others that are taking the DMD Tecfidera. Being new to all of this I’ve been trying to find out as much as possible on the Internet which usually ends in more panic than anything. Thought this site would be the most accurate. I’m on my second day of the first week (a half dose 120mg) full dose next week (240mg) and would be interested to know when the common side effects kick in and people’s experiences of them. I’m trying to organise things for the coming weeks and this would be helpful. I know everyone is different just to give me an idea. Nothing so far am I the lucky one?

2

Hi,

I am still learning a lot about ms as well. I was only diagnosed last April.

You will find lots of posts about Tecfidera on the everyday living board.

I have been on Tecfidera since the middle of January and this is my first DMD. I had some flushing a couple of hours after taking my first dose. Over the first couple of weeks i would get some flushing and a rash. It was very random when it happened and would only last around 30 minutes.

I still get a bit of flushing the odd time. But have never needed to take asprin etc.

The main thing i would say is have plenty to eat before taking your dose. As this should reduce the change of gastric side effects.

The forum is great for getting good advice.

Hope everything goes well for you.

Good luck.

3

Thanks Irons,

I’ve found these posts now, sorry I hadn’t seen them before. New to the site.

I’ll have a look at the fb group talked about also.

4

hi butterfly

i was fine on the lower dose but kept being sick when i moved to the full dose.

i have sorted that by experimenting with my food.

two courses work best for me. i take the tecfidera between courses and it seems that it gets trapped between courses and it stays down.

so breakfast is cereal followed by tecfidera, then toast.

evening meal is a good excuse to have a dessert!

don’t worry, you’ll be fine.

carole x

5

Thanks Carole,

The 2 course tips sounds good. I’m struggling with having to eat breakfast as I normally skip but I know it’s to my benefit as I’m trying to stick with the 12 hours between doses. I’m sure it will just be trial and error. Just trying to get through the first couple of weeks before I start experimenting with times & food.

x

6

don’t forget to have a delicious dessert as your 2nd course!!

carole x

7

I was told that 8 hours between doses is ok, I usually have between 8-9 hours between doses.

Maybe you could have your first dose a little bit later.

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Yes Irons I was told at least 7 hours, don’t know where I got the 12 hours from as I’ve just checked the leaflet and can’t find it. Once I’m on the full dose a few weeks I’ll start to reduce the time. I’m just so relieved things are going so well, only mild indigestion up to now.

Carole how could I forget the deserts I’m a real sweet tooth!

9

Oops dessert x

10

my wife started half dase Tecfidera on Monday 9th March. and full dose Monday 16th

only side effects so far is flushing and even then only one bad (obvious to everyone who saw her anyway).

other than that there has been nothing of note

still early days i suppose but we are very thankful for what we have got so far

11

*dose