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Tecfideria opinions

Hi I have an appointment on Friday to discuss changing to this new drig from rebif. I have been on rebif for 18 months now however I am having site reactions and nerve pain. I now only have two sites I can inject in and one of them is playing up. What I would like to know is how have others got on on this new drig? Would they recommend it? How bad are the side effects? I would love to stop injections but some of me is worried I may make the wrong decision. I have a five year old so worry about severe side effects and my looking after him with these side effects? Also if I switched and it didn’t work out would I be able to switch back to rebif? Thanks in advance xxxxxxx :slight_smile:

Hi Lisa!

It is impossible to know how the side effects will affect you. We are all so different that the only way to find out is to try Tecfidera for yourself.

I can however, tell you that my own experience has been a positive one.

I was on rebif for over 9 years. I did really well on it for a long time but then began to feel quite ill. I had really bad neuropathic pain in my head/jaw/face and i lost my appetite and was struggling to function. I felt pretty ill.

My neuro decided it would be best if i came off the rebif. I went onto Tecfidera/aspirin trial so i started it in August.

I have done really well since August. I had some flushing at the beginning but it really has not bothered me too much. I have had no stomach issues at all which i am surprised at because i was not eating very well.

It is lovely not having to do the injections. Tablets are much easier.

I have children so understand your need to be able to function properly.

The neuropathic pain i had in my face/jaw/head area has started to be less severe. I have had this for 4 years so i am guessing the Tecfidera is having an effect on that also. It has not improved overnight but there is a definite slow improvement in my condition. I am hoping i continue to improve on the Tecfidera. I feel much better than i did and am now doing a lot more than i was able to do before.

Tecfidera has had a positive effect on my life. I am thrilled i decided to change as it was a big decision for me to take after 9 years on the rebif.

I was also scared to change and worried about making the wrong decision. I do not however know if it is possible to go back onto rebif if the Tecfidera does not suit you. This is something to discuss with your neuro.

Best wishes

Teresa.x

Thanks guys and so pleased Teresa you have made improvements…that’s a really positive story.

thank you xxxx

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Hi Lisa,

ive also been posting my experience on another thread so this might be repetition for some.

Really happy I’m on tec as its more effective than rebif and no more injecting.

I have suffered from nausea often uand vomited once. However managed to mostly solve this by eating more food - chocolate my favourite.

However even now when I only manage to eat a little the nausea isn’t as bad as in the beginning. So maybe I’m just getting used to it- on 4th week now.

v occ flushing but doesn’t really bother me.

havent noticed any effect positive or negative on MS symptoms

good luck in your decision

hugs

min xx

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tecfidera is awesome.

stomach cramps for 15 minutes on about four occasions; cured with paracetamol.

a few days during week three saw mega-itchy patches; cured with anti-histamines.

no stomach upset or pukes. pills taken on FULL stomach of whatever food i fancy (apart from second daily dose when going to bed).

no complications or considerations due to alcohol consumption.

no needles. no injection site concerns. no worries.

I have two kids aged 5 and 3 so worried re side effects too… Shouldn’t have…tecfidera was my best decision!!! So easy and for me trouble free. :slight_smile:

Hiya I swapped to Techfidera about 5 months ago from Rebif. What I will say is gear with it. Fir 3 months I had a dodgy tummy and rush to toilet and was sick o occasions. I gave a 3 yr old and 6 yr d so worried bout changing also. The very first pull I took I came out in hives and flushed dace I thought Oh no I’m not gonna cope well with this. After 3 months then worst effects had gone I still get random hot flashing in my face and it goes kinda tingly but I actually don’t mind it (I’m wierd though lol) when it’s freezing outside its a welcome effect lol. Good luck I’m sure u will cope well with it. I was glad of the relief from needles shares bins and my legs totally messed up from

so glad to read about everyone’s positive experiences with tec.

my first patch is coming tomorrow.

carole x

Hi,

I should be starting Tecfideria next week just waiting for confirmation of delivery.

I am trying to think what to have for breakfast as at the moment i have a couple of slices of toast.

I have been told its best taken with a protein meal. So i am looking for a few ideas ?

This will be my first time on a dmd drug.

Pleased everybody seems to be doing well on Tecfideria. How are you finding it Pigpen ?

Thanks

hi

i’m on week 3 now.

irons - i have porridge made with whole milk and have blueberries on it.

no dodgy tum

carole x

Hi,

Thanks for the quick reply Carole.

Pleased you are finding Tecfideria ok for you.

I’ve never been a big lover of porridge but will give it another try as it’s years since i last had it.

soggy oats is not my idea of a fun start to the day :slight_smile:

i go for toast myself. i have an aspirin and coffee, 4 slices of jammy toast (no butter etc), pop the Tecs and then 2 more jammy slices.

jobs a good un!

again, people are reporting advice regarding high fat this, protein rich that… i would promote the notion of quantity over (any form of) quality. just get that belly full.

also, if you are not one for eating breakfast, then do not. With the only time constraint for taking Tec being that the two daily doses are to be at least 4 hours apart, why not take dose 1 with lunch (for example at noon), and dose 2 after supper say at around 8pm…?

Thanks for the advice Paolo Smythe

I always have breakfast. Just wondering what is best to start the day off with.

I like the idea of quantity as i like my food.

that’s the nice thing about Tec, no dietary constraints.

(the drug advice says it doesn’t need to be taken with food; the prescription advice says some food; prevailing advice says lots of food of whatever kind)

i don’t even consider the consumption of booze in conjunction with when i take my Tec.

MS is bad enough without feeling obliged to become a sober porridge eater! :smiley:

I think the best thing to start your day off with, is exactly what you like to start your day off with.

bon appetit!

Thanks for the advice.

Just want to get started on it now.

You need good oats - get Scots jumbo oats or Sainsbury’s finest and make it up with some stewed fruit or chop up an apple/pear/frozen berries into it so it cooks when the porridge is being made. A drizzle of honey, jam or syrup is another way to make it tasty. That or stir in raisins or other dried fruit and sprinkle on brown sugar. Another bonus of adding fruit when you cook it is that it doesn’t tend to boil over so much.

Once you’ve made it a few times you’ll know exactly how much oats:water you need and how long it will take in the micro. Use a bigger bowl to make it in (because it’s a pain if it boils over) and decant it into your eating bowl.

You try porridge and I’ll try getting on Tecfidera.

[quote=Paolo Smythe]

that’s the nice thing about Tec, no dietary constraints.

(the drug advice says it doesn’t need to be taken with food; the prescription advice says some food; prevailing advice says lots of food of whatever kind)

i don’t even consider the consumption of booze in conjunction with when i take my Tec.

MS is bad enough without feeling obliged to become a sober porridge eater! :smiley:

I think the best thing to start your day off with, is exactly what you like to start your day off with.

bon appetit!

paulo, ha ha ha! you made me chuckle “sober porridge eater”.

carole x

Thanks for the advice.

I will give it a try.

Just had word this afternoon that i will be getting my first delivery of Tecfideria on Tuesday morning.

So i haven’t got long to wait now.

Congratulations!

I was so excited to get my first dose, i couldn’t wait for delivery and went to the dispensary personally to collect (and I continue to do so ever since!)

What is your dosing recommendation? Mine was very gradual:

Taking 120mg capsules it was 1 daily for week one, 2 for week two and so on until the full 4 pills a day come week four.

I have recently changed to the twice a day 240mg capsules.

After three months i went for a blood test to check my lymphocyte levels and they had dropped by the standard 0.8 units. But that makes me ‘low normal’ (a fall from average normal).

So far so good :slight_smile:

Good luck!