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To start TECFIDERA yes / no - advise please

Hello,

I visited Neurologist today who is suggesting I starting DMD in particular TECFIDERA.

Could you give me your experiences taking this drug please?

I was diagnosed in 2007 at age 27 and as yet I have never taken any DMD and this feels Alien to me. Just wondering what would happen if I stayed off them or do you think they do help?

Many thanks

Sam

hi sam

nobody knows how much DMDs help.

i just take them and am grateful for our nhs and not having to pay thousands for the drugs.

i was on copaxone daily injections for a few years in which i didn’t have a relapse.

then my injection sites started to hurt so i kept skipping the painful areas.

this led to me developing atrophy on one arm.

when my ms nurse saw it she said that i wasn’t to inject again and put me on tecfidera.

it’s been a couple of years now and i have to say it’s easy once your body is used to it.

the most common side effects are gastric issues and flushing.

however both of these can be managed by eating before taking it.

i found it better to take it halfway through a meal, sort of trapping it between 2 lots of food.

the flushing can be a pain in the bum because it makes me as orange as donald trump - not a good look!

again it doesn’t happen if i eat first.

so make sure you eat first.

if you aren’t a breakfast person, you can take it at lunch time. there just has to be at least 4 hours between the tablets.

if it doesn’t agree with you, you can change to a different DMD.

good luck

carole x

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Sam YES See Medications on this page by Stacey Bertie

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Tecfidera has lowered my blood count too much so I have had to stop it last week…but it’s not like this for everyone…previously I was on copaxone daily injections which left me like a pin cushion…so new dmd probably in the pipeline.

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Hi Carole,

Thanks for your reply

Have you had any relapses since starting tecfidera?

Looking like Donald Trump is never going to be a good look

I’m a breakfast, lunch, dinner and snacking kind of person, so the eating first shouldn’t be a problem…lol

Thanks again x

Thanks for your reply and good luck in deciding new dmd

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Thanks for your reply Bertie. Had a look, that’s positive you’ve had no side effect.

Hi Sam

The first thing to say is yes, I think it’s worth starting a DMD. It’s common for people who’ve never really had a relapse to not want to start. But the thing is, you don’t know what the future will hold. But DMDs have been shown to be effective.

The other main thing to say is that if/when you start one but you don’t get on with it (for any reason), then you can ask to swap tp something else. We’re all different, and can have different experiences with each DMD. The first one I started on had bad side effects and didn’t stop relapses. So I swapped to another, and that was brilliant.

I’ve been on Tec now for a couple years, and so far so good. Side effects have been mild, and no relapses either.

Hope that helps

Dan

Hi Sam

If you’re having relapses, then being on a disease modifying drug (DMD) is only sensible. Tecfidera is meant to be most effective when it’s the first DMD a person has been on (I’d post a link to the reliable source where I got this from, but the damn page has vanished - it was on the Barts Blog).

If you don’t fancy Tecfidera, or don’t get on with it, you should be able to swap to another.

I took it for about 6 months and like Redman, I had to stop it because of low lymphocytes (a type of white blood cell that fights viruses). Unfortunately that’s a side effect that can happen, but you have blood tests regularly, especially in the first year of taking the drug, so such things are picked up quite quickly.

Many people have recommended that you start Tecfidera very slowly. The normal regime is to start taking two half dose pills a day for the first week, then go up to two full dose pills a day thereafter. It should be possible to negotiate a slower start, ie one half dose pill in week one, two half dose pills in week two, one half and one full dose pill in week three and only from week four go up to the full dose twice a day.

As the others have said, sandwich the pills between food, either eat half a bowl of porridge, take the pill, then eat the rest, or something similar.

Good luck with making the decision.

Sue

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Hi Dan,

Thanks for your reply! Seen Neurologist on Monday and he explained the reasons why I should start DMD and said it’s not always about the number of relapses, it’s about trying to help MS in years to come. Which I didn’t realise. I’m back at MS nurse in January when I’ve to let them know my decision.

Hope you continue to keep well

Thanks again

Sam

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Hi Sue,

Thank you again for your detailed reply, you’re really amazing and do a great job of keeping us right

I seen Neurologist on Monday and he explained the reasons why I should start DMD and said it’s not always about the number of relapses but obviously they are for that too but it’s about trying to reduce the affect of MS in years to come. Which I didn’t realise. I’ve got until January to decide as I see MS nurse then.

Thanks again Sam x

I’ve been on tecfidera for a couple of years now and no new lesions or relapses. Its a tricky drug. Introduce it slowly. I was too quick off the mark and had severe vomiting etc. Took a long time to get used to it and even now I have tecfidera ‘burn’ every couple of weeks (get very hot, bright red all over and tired out). This can be a nuisance and has caused me to go home from work a couple of times as I could not stay awake properly for the rest of the day. My bloods remain good so I’m prepared to put up with the ‘burn’.

As my boss says, better one day lost than weeks with a relapse.

Hello,

Sorry just seeing your reply, thank you for replying.

I haven’t started yet but go to nurse in the beginning of January, Best Buy some light weight polo shirts and good makeup for the bright redness by the sounds of it. Your boss sounds like an understanding person.

Hope you had a nice Christmas and keep well

Sam