Hi I’ve been reading about Tecfidera the new oral drug that has just been licensed in Europe. NICE are currently assessing it in the UK. Interesting link on the National MS Society in America if you Google their website and search on Tecfidera, there is a YouTube video about the drug. The side effects sound ‘less’ than other DMDs and it has a good efficacy profile in reducing relapse rates as well as potential neuroprotective qualities. Apparently it can cause gastrointestinal problems and some patients stopped taking it because of these, and one of the ingredients used which is similar to that used in a psoriasis treatment, has been linked to PML, but less prevalence than in the use of Tysabri for example … Interesting to know about the potential choices emerging - good film. Fizz
I cant find this could someone post the link xxx
Search for the thread onTecfidera BG12 by Brog64 who is in Australia and already takes this! Teresa xx
What You Need To Know About Tecfidera® - YouTube This seems to be the link - but if you google ‘What you need to know about Tecfidera’ it comes up as a you tube film
I have bumped up one of Brog64’s posts and sent her a pm to ask how she is doing on BG12.
She lives in Australia so managed to get it before us!
Hopefully she may come and update us.
Teresa.x
If you search ‘What you need to know about Tecfidera’ on google the film on National MS Society comes up This seems to be the link but don’t know if it’s copied correctly - also my posts don’t seem to be appearing so may have posted this twice! What You Need To Know About Tecfidera® - YouTube 11 Jun 2013 - Uploaded by NationalMSSociety MS Learn Online is the National MS Society’s online educational webcast
Hi Fizz44,
I am the Belinda mentioned and I have been on Tecfidera (BG12) since early Novemeber last year.
I also talk to a lot of Tec Heads here in Australia who are also on it so cn give you some feed back on how most people are finding it. The main side effect seems to be what Biogen call “flushing”.Personally I call it “rolling in a nettle patch and then trying ti relieve the itching by having an acid shower.”
The flush starts for most people several hours after taking the Tec and lasts for up to a few hours. For some people it is only a mild reddening of the skin but for others it is a head to toe blazing red and intensely itchy and burning sensation.
The gastro side effects are mainly nausea with the diarrhoea, for most people peaking at about week 4-5. Some people also experience a degree of hair loss although for me it was only temporary (about a week to 10 days)
I know that all soinds a bit grim but honestly by weeks 5-8 most people are finding there side effects have eased right off and also we have found a regime =that works very well for preventing or reducing the side effects.
It is now reccommneded that you take the Tec 1/2 an hour after eating a high protein, carbohydrate meal with some fat. I found peanut butter and honey on toast did the trick for breakfast and a normal dinner. Also people are finding that taking a cardiac dose aspirin 1/2 an hour before the Tec works really well. And probitoics to deal with any gastro issues.
I don’t have any side effects now at all but do still stick to the above regime minus the probiotics. I tried to go without an aspirin the other day and got some flushing again. But for me taking it is no big deal at all, just a part of my daily routine and no hassle at all.
It does look very impressive on the clinical trials but personally I am in my second relapse since starting it after a fairly quiet period of two years with the MS. But I am sure that is simply coincidence as the Tec hasn’t been in my system long enough yet to be having much of a therapeutic effect. I’ll be looking forward to my 6 monthly MRI with interest.
I certainly much prefer it to other meds I have been on and it is definitely the one with the least side effects for me.
I hope it becomes available soon in the UK,
Cheers,
B