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DMT

I have been recently diagnosed (April 2015) and have been offered Tecfidera as an option to reduce relapses.

I would welcome any experiences, thoughts or comments as it is all very new and weird at the moment.

Sarah D

do it.

as soon as possible.

good luck.

i agree with Paolo. I’m on a different DMD but the principle’s the same. Get started as soon as possible because if you can prevent just one relapse, it’s worth the effort.

Good luck.

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Sarah

I’ve been taking tecfidera since the beginning of March this year (diagnosed November last year) and so far so good. Haven’t experienced any nasty tummy side effects & only experienced flushing 4 maybe 5 times which wasn’t that unpleasant. However I did find I had a face full of spots for the first couple of months but that’s calmed down now.

Like you, I was also apprehensive but have found my journey with Tecfidera unharmful so far. I would recommend it

Good luck. X

Hi. I agree with everyone. When I was dxd at the very end of last year the neuro told me that he advocated aggressive treatment, hence my being on Tec. I was apprehensive but it hasn’t been too bad at all. I did loads of research beforehand (fab advice on here and on the UK & Ireland Facebook group) so I was as well prepared as possible.

I think of Tec as being a sort of insurance policy as it can reduce relapse rates by up to half, and decrease disability progression. Sort of like claiming on an insurance policy for, say, a burglary, and getting repaid 50% of the value of what was stolen. Not perfect but a lot better than nothing!

Louise x

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I am so thankful for all the comments. It really helps. Ordered the tec so just waiting to start!

Please keep us updated on your experiences with it.

Hi there,

does anyone have advice on eating whilst taking the tablets? I understand that ‘full fat’ rather than skimmed milk for example with my porridge.

Help?! I’ll be the size of a house!

Sarah

Hi Sarah. When I was given the first supply of Tec there was a handout saying that it’s better to have it with fatty food. I had it with some full fat Total yoghurt - I do Slimming World (when I stick to it that is) and usually have fruit and yoghurt for breakfast. So I just counted in the full-fat version instead of the 0%. Oh, also had a couple of hard-boiled eggs sometimes, with a tablespoon or two of Hellman’s full-fat mayo (again, counting it). Some people say that it doesn’t matter what you have as long as you have plenty of it, and have the Tec in the middle. I take it that way with dinner too, and haven’t added fat to that. Three months in I have the fruit and Quark (low-fat cheese) and it’s fine.

Glad that I had the omeprazole on hand to take for the first few weeks though.

Louise x

Why would my neurologist have said that I wouldn’t need DMDs unless relapses are less than 2 years apart. Surely the point is to try and keep it at bay as much as possible

Sarah, I don’t have full fat things with my Tec. I have semi skimmed milk on my cereal (I tend to have granola or muesli with extra fruit/nuts/seeds added to bulk the bowlful up) and that’s been fine so far. Often there’s little to no fat in whatever I take the 2nd dose of the day with.

I definitely go with the “just make sure you eat enough” method. I don’t think you need to eat a lot, just a decent amount, rather than just a single piece of toast, for example. I mentioned elsewhere that I feel you just need to make sure there’s enough food in your stomach to carry the tablet through to the small intestine, and the stomach upsets come from it not having been carried through, and dissolving in the stomach where it’s not meant to be when that happens. This is pure conjecture on my part, so potentially entirely wrong of course! Makes sense to me though.

Best of luck finding what works best for you! :slight_smile:

Hi Janetv

iwould like to know that too.

I have asked for DMD’s too , ironic that you’ve got to get worse before you get better x

Ann

Sarah

If I forget to take a tablet with a substantial meal & I take it later than usual I eat some nuts, which are fatty but healthy. It hasn’t caused me any issues.

Just another idea.

X

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Yes I can do that too! :slight_smile:

Was expecting the GP to sign me back into work today - but he seems to think my symptoms still need to be managed better…

However as the occasional dizziness and neck cramp continue perhaps he is right.:frowning:

fat is not in my diet.

problems have not been associated with my tecfidera.

it may sound too good to be true but, you should continue to eat whatever you like to eat.

the only consideration, is the timing of when you take the capsules, ie. take them only once you have a respectable amount of grub in yer guts :slight_smile:

good luck and don’t worry or even think about this too much.

why? coz your neurologist is crap. go find another one. good luck!

if you want to work and feel able to do so, i fail to see why you shouldn’t.

nothing like being forced to stay at home to enhance your sense of being a invalid!