Last reply 2 days ago
Tecfidera

After speaking to my neurologist we have decided Tecfidera is the best treatment for me to start on ( not taken anything previously and just been diagnosed with RRMS) anyone had any experience with this drug?

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stumbler
3 days ago

@gem7681 , a “Tecfidera” tag has been automatically added to the foot of your post above.

Select this tag to access previous conversations about this medication. 😉


gem7681
3 days ago

@stumbler thanks


brianl19
3 days ago

@gem7681 I haven’t heard of Tecfidera until now – will have to “google” this. Was on – oh, gee struggling to remember here – Copaxone but that was no help.


rmdaniels
3 days ago

@gem7681
Hiya! I was just diagnosed in Feb this year & started on Tecfidera. So far it’s been fine for me. The side effects are very mild/minimal for me. Mainly flushing for a few minutes a while after each dose. I like the pill format instead of shots! Good luck my friend!


fiona_payne
3 days ago

Hi, I was diagnosed in January this year and have been taking the drug for approx a month now. I don’t particularly like the way it makes me feel. I get about one hot flush a week which is red hot and feels like acid in my veins. But the horrible tummy ache most days just gets me down…it takes my appetite away from me, bloats my tummy and just feels like an angry volcano grumbling away. I can’t seem to get the food thing and times to eat right. Maybe it will be different for you. It seems that way. Good luck x


bernadette
3 days ago

@gem7681
why isn’t your neurologist starting you on the best drugs out there e.g Tysabri or Ocrevus?
is it because you preferred an oral drug to an infusion, or do they not want to offer you the best upfront on Isle of Wight?
Maybe you could go to Southampton if that’s the case.
just my initial thoughts
Its a particularly crummy time at initial diagnosis so I hope you have support and are feeling ok


honey9
3 days ago

@gem7681 I have been on tecfidera for 5 years now tried other medication to help me but I kepted having relapses but tecfidera is keeping my ms at bay since starting on tecfidera I have had no relapses which is good I hope this helps xxxxx


rjoneslaw
3 days ago

I was on tecfidera for 3yrs and it stopped working I had a major relapse, now I’m on ocrevus which is and iv infusion done every 6 months


nutshell88
3 days ago

Have never had flushing in my life 1 week with this drug caused me flushing i hope i used the right wors and sick stomach in everyway


gem7681
2 days ago

@bernadette after a lengthy discussion i decided I wanted to try the tablets first, I’m really concerned about the long term side effects of all these drugs, and my thinking is that with an infusion if it doesn’t agree with me it’s in my system, at least with tablet form I can stop it.


cakeangie
2 days ago

Hi there, I think I’m going to do the same as you for exactly the same reasons. Just out of interest, did your consultant send you away with a prescription or have you some steps (like bloods etc) to go through before starting on it. I see my consultant mid-August and want to get started sooner rather than later. Good luck xx


highlander
2 days ago

@cakeangie
Hi your bloods should be checked just before you start it.
Then checked every 3 months after.
Under the post there is box marked tecfidera click on that it’ll take you to other posts made about it.
Or just ask 😃 ask you have.


cakeangie
2 days ago

Thank you, I was more think how long after the appointment that starts but I guess it will vary between hospitals x


judithamrei
2 days ago

@gem7681 when I was diagnosed in December 2017, I started with Tecfidera, but I kept having relapses. Therefore my neurologist and I decided in September 2018 to change to Ocrevus. Tecfidera works well for many people and Ocrevus is rather for people with a really active MS. However, my experiences were rather ok than good (despite that it didn’t work for me): I had a few flushes in the beginning but in the end I probably experienced one every 1.5 months. Additionally, I had some trouble with my digestion (you should definitely eat well before taking the tablet). In the end, I experienced loss of hair. You need to get your blood checked every 3 months but probably more often in the beginning to be sure 🙂
I think we all should be aware of the fact that every medication is having different impacts on us, and that some medication might not work for me, but it does for you. We only have to find the best suiting drug. Good luck with your medication and I hope you’re doing okay with your diagnosis.


gem7681
2 days ago

@judithamrei @cakeangie it’s a lot to take in when first diagnosed, and knowing the best way to go is difficult, I suppose it’s a bit of trial and error and see what happens thanks for your reply.
Good luck to you @cakeangie xx


judithamrei
2 days ago

@gem7681 yes, definitely! I hope you’ll find your way. If you need to talk to someone, you can send me a message!


cakeangie
2 days ago

Thank you @gem7681. Good luck to you too x


gem7681
2 days ago

@judithamrei thank you xx

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