Tecfidera

Hi, I will be getting my first delivery of tecfidera on Tuesday and i was wondering if anyone could give me any advice please, does it help with any symptoms I have already got ie fatigue, numb arm ?

Hi

When you have it, have a big meal. If you happen to feel nauseous later, have a handful of nuts or some peanut butter.In terms of improving symptoms, DMDs aren’t meant to improve them, they’re only meant to reduce relapses and slow down progression. There may be other medication that can help with some symptoms, so speak to your MS nurse.

Good luck!

Dan

Been on it for 6 years.

Will not help symptoms but I have had no relapses since taking it.

Pissed off that I was not given it earlier before I became disabled

You do not ned a meal a jam butty will do

Bertie

Hi, been on it 2 years and relapse free in that time. Like others have said take with food.

Thank you all for your replies, has anybody had an mri scan since being on it ? Has it stopped any new lesions ?

Yes, I’ve had 2, both no new lesions.

That’s really good to hear, thank you

i have been on it for nearly 6 years and have had no relapses…

I struggled at the start with vomiting, stomach cramps and no appetite. I asked to go down to half doses to help me through and this helped me and I am pleased i stuck by. I nearly quit!

I occasionally get hot flushes still but they are usually fine.

Hey, How are you finding it? I’ve been on Tecfidera 3 maybe less years (i can’t remember). No relapses no new lesions, everything is blessed. Symptoms I have with Tecfidera is hot flushes but feels like itchy skin. Bowel open an hour after taking the tablet. The Advice I would give you is eat rich in protein foods.

Hi, I started taking it on Wednesday, only half a dose for a week, I will be starting the full dose on Wednesday but so far so good, i hope you don’t mind me asking but during the time that you have been taking it have you still got new ms symptoms ?

Hi Julie, nope, no lesions, relapses or any other symptoms tbh. If it wasn’t for the residual damage to my vision from 2 bouts of Optic Neuritis I’d almost forget I had it. I put it down to diet, exercise and lifestyle choices, and of course the Tec. Living as stress free a life as possible helps too. I routinely take B12, D3, Flaxseed oil. As a well know supermarket chain will tell you… Every Little Helps… Stay safe.

Hey - just in case it helps I started on tec about 3 months ago and did have quite a lot of the flushes to deal with at first, but these are now easing off and I’ve also realised that certain things trigger them, such as eating a snack within a couple of hours of taking a tablet, so I’m learning to avoid them.

So even if it’s a bit tough at the start hang in there because you do get used to it. Three months on I’m really happy with it and I’m happy I didn’t give in which I was tempted to at one point! I also follow the OMS lifestyle and that combined with the meds have me feeling more ‘normal’ at the moment than I ever thought I would again a few months ago.

Good luck xx

Sorry for the delayed response, I haven’t commented on here for a some time.

I was on the turquoise torpedos for a while (can’t remember how long), having had a bit of a struggle with my first therapy - Avonex.

I used to ensure I’d had something for breakfast before the first dose of the day, and the second was with my evening meal

I had little difficulty with side effects but I would occasionally look like I’d spent too long in the sun but that was about it!

However having moved to a new hospital I had an MRI that showed I was relapsing. It seemed that the tecfidera wasn’t working and so I was moved onto Gilenya.

Best of luck

Sammy