Last reply 2 weeks ago
Tecfidera

Hi. I have just been diagnosed with RRMS and am now considering which treatment to go for as my neurologist is keen for me to start soon. Does anybody have any experience of Tecfidera good or bad ?
Brian.

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highlander
2 weeks ago

Hi @brian-h
Welcome to the gang.
I’m using Tecfidera, there are a few of us here that are on it, so to speak.
If you look under your original post you’ll see a few boxes with a few topics.
If you click on one of them it will take you to previous posts on that related topic.
I’ve been using it for around 3 months now and have experienced most of the side effects but that was mostly over after the first month. All of them were very short lived and nothing more than annoying.
You’ll find loads of support on this site, have a laugh or a moan.
No doubt a few more of us will be along soon to say hi.
Keep smiling


lightning87
2 weeks ago

Hey Brian!!
I started Tecfidera in September. It’s been great for me apart from the very occasional flush.
I have an app to remember to take it, if you start Tec then just take an aspirin before hand – works wonders I think.
All the best x


vixen
2 weeks ago

Hi @brian-h, I have been on Tecfidera for 18 months. I have been rigid about taking it with a mixture of fat and protein and have never had problems. It’s great in that as it’s tablet form, it doesn’t limit you in any way. As above, read through the posts in it as there are tips of taking aspirin, etc. And same as you, I had the weird right hip stuff in 2016 too. I’ve got it on my right knee at the moment! Take care


brian-h
2 weeks ago

@highlander @lighting87 @vixenon
Thanks for your comments and advice, It is reassuring to contact with others and helpful for me. Take care.


andyturner
2 weeks ago

Only side effect I get is the flushes. But that normally happens when I forget to eat when taking the tablet.
Always remember to eat with them.


dominics
2 weeks ago

@brian-h Afternoon, I’ve been taking Tec now for 7 years as I was on the CONFIRM trial that was the Biogen trial that led to the licensing and approval.

Overall – reasonably well tolerated and looking at the data it is one of the ‘must-have’ drugs in terms of efficacy.

+ points – oral med. I injected for years before and that is a comnplete fag compared to popping pills

– points – Two things really. The first is flushing. For me it is a defined 45 min start to finish thing. Once a day about 70% of the time. I go bright red like i’ve been sunburned. It also feels like that with the occasional itching thrown in. It is manageable and versus not treating MS at all or with a less otent drug I’ll take it any day of the week. The second thing is – strangely – compliance. I have an app to remind me to take it, I set multiple alarms and yet my daytime dose often gets overlooked for an hour or three. I never forget it entirely, just miss my 1030h target a lot. 1030h because that is when I take the nighttime dose as part of my routine so to ensure the most balanced levels in my body I aim for 12h apart.

Looking at the way MS behaves in you when untreated versus the positive engagement with a modern medication then I wouldn’t even hesitate.

We all have our personal experiences but the only way to really tell with MS is lagging indicators. Thinking that what is happening this moment or is happening to someone else can set you off on wild mental goose chases. The Neurologist, clinical pharmacist who is the neuro specialist and the MS nurses will have seen a far wider sample of patients, so their views are generally based on wider experience.

With MS, everyone knows somwone or has read something about a wonder-drug, cure, diet, magic tinfoil hat and so on 😉 You need to take everything with a pinch of salt as people are usually trying to help, however mis-guided they may be.

Take it easy and let us know how you are doing.


grandma
2 weeks ago

Hi Brian, I’m one if the old codgers, had Beta-Inferon for 23 years then as things got a lot worse 18 mths ago was put on Tecfidera at the start of this year. Usual side effects in first few weeks, fine after about 8 was, fine since, biggest problem is remembering to take evening tablet cos I’m usually so knackered by then that I’m lucky if I remember what day it is.😍


brian-h
2 weeks ago

@ grandma
Thanks. Good luck. Has it reduced your symptoms at all ?


sophia_gaston
2 weeks ago

Hi @brian-h
I’m 23 and have been on Tec for about a year and a half now, old lesions on my frontal lobe have shrunk and I have no active lesions now. My initial symptoms were of numbness from the chest down, this subsided gradually and was totally gone after 2 or 3 months on Tec.
I have the common side effect of hot flushes if I don’t eat enough with my dose but other than that it’s been great for me.
I hope it’s as good for you 🙂


brian-h
2 weeks ago

@sophia_gaston
Thanks for the feedback, I haven’t actually started Tecfidera yet
Waiting to start, thanks for the feedback. Good luck.


hollylb10
2 weeks ago

I decided to come off tec, after a year I just couldn’t get into a routine with it. I kept on forgetting to take them, even if I had set an alarm. And when I did remember I hadn’t eaten so I couldn’t take them. I would also flush very badly and get really red itchy skin, my nose would start running and then that would make me skip them if I had plans and had to go out the house. Now I am only being offered injections, which I don’t want so I am on no meds. I hope tec works ok for you x


stumbler
2 weeks ago

@hollylb10 , there are other options. There’s other oral options, daily or periodic, and infusions.

Check out what is available here :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


grandma
2 weeks ago

Well I used to relapse 2/3 times a year, were are the end of November and it has only happened once this year, and to quote the Queen, this has been my ‘annus horribles’ and am still in the middle of it, Magistrates Court next Monday morning to try and get my Mobility Car of 19 years back, so yes I wouldd say its working!😍

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