After seeing the recent (22nd jan) posting by the MS society about Teriflunomide, I wondered what everyone’s thoughts were?
I assume this is good news as Teriflunomide has been used in the USA (under the name Aubagio) for a while. According to the MS society, the NHS has a legal obligation to start funding this treatment for eligible people with RRMS within the next 3 months - by 22 april. Is anyone familiar with this oral DMD? Also do you know what the criteria is to be eligible for it?
Tia
Intersting might look on the National MS Society forum website (think its USA based) and see if there any posts from MS patients about it.
There was a thread about it quite recently (last few days), which I can’t find, because, as usual, search doesn’t seem to be working properly. Aubagio has apparently not been posted about at all (despite appearing right here in this thread!), and “oral” doesn’t feature since mid-October. I’m sure it was mentioned much more recently than that.
Anyway, gist is you need to have currently active RRMS - i.e. two relapses within the last two years, AND - according to another poster, at least - you still need to have tried one of the injectables and “failed” (i.e. it didn’t work, or had to be discontinued due to serious side-effects). So it’s certainly a long way before it’s routinely offered as the first choice.
Tina
Yes Tina there was a thread as I commented. I said I had asked my nurse only the other week and she said that they would only change those on injectables if they were failing I them as in their eyes if their current meds are working then why change. Which I can kind of see xxxx
I’m 14, and have rrms, I’m about to start DMDs , (avonex to be precise!) , and I’m eager to read more about this new drug actually, as I absolutely HATE needles, (although should be very used to them by now as I’ve didn’t the last four years pretty much LIVING in various hospitals around the country!) Thing is, is the side effects, if they out way the benefits-like everything- what’s the point in taking them? Obviously, that’s a very personal thing, (how one reacts with a drug) but personally I CAN’T WAIT FOR IT TO GET ROLLING, after all it’ll help me from not being stuck with a needle one a week!
Beth xx
Hi Just wondered if anyone else came across the apparent possible big breakthrough for MS patients drug which works in a differnt way to current DMD’s. Its along way off being availble but here’s a link to the article .
Hi Anonymous
I’ve just seen your link about a poss breakthrough for MS patients which is pretty amazing to read. I noticed this was dated June 2013. Has anyone else seen or heard any follow up to this article or research?
Tia
I’m currently trying to decide on DMDs. I’m really not keen on taking the injections once a week and am hoping they will start me on tablets. Not counting my chickens though!!
Hi everyone
Hope you are all doing well.
Sorry to bump this post but thought I would mention the converstation I had just before Christmas about this new oral drug.
On my last visit to the neuro back in November, after being given the normal irritating spill of “yes you may have MS, but we have to prove it 100% and untill you have a lumber puncture, we will not know for sure…you do have lesions which are suggestive on demylation, but we can’t acess your MRI scan results because its on a different hospitals computer system…but the neuro has seen it and he’s not a betting man but would say that he expects you to be diagnosed with MS” yada yada yada
I decided enough was enough and gave the neuro a piece of mind. After everything on my possible MS relapse list being snubbed and dismissed by him, (for the record, I was asked to keep a list of things which had happened to me, e.g. numb feet, blurred vision, unable to pee, etc, etc) I asked him what he was going to do to HELP ME to slow down the progression of any relapses which i may have, IF one day I do finally get diagnosed with MS.
His response was, that as soon as I had a lumbar puncture (which I don’t want to have to be honest) and the results came back positive, then by the time I had been back for a follow up appointment,(in April) then an oral form of DMD should be available and that he would prescribe me this new oral drug. He wouldn’t want for me to start on injectibles as it is not a nice thing to have to do, inject. (that was his words).
I asked him what was the qualifier for the oral drug and he said that a patient would have to have RRMS. He already had patients asking about the drug and as soon as NICE approved it, then he woud be in a position to apply for funding for both exisitng and newly diagnosed patients.
My lumbar puncture is due in the next couple of weeks and my follow up appointment has been booked for April, so untill then I don’t know what the results will show, but I just thought that I would share the conversation I had with the neuro about the new oral drug.
P.S. I haven’t posted here for a while as I am trying to put being in limbo on the back burner and trying not to think about it that much.
Has anybody started on the new oral drug yet?
Just found this: NICE recommends teriflunomide treating adults with active relapsing–remitting MS (normally defined as 2 clinically significant relapses in the previous 2 years), only if they do not have highly active or rapidly evolving severe relapsing–remitting MS & the manufacturer provides teriflunomide with the discount agreed in the patient access scheme [28]. 22/01/2014 14:36:12 I’ve got an appointment with Oxford next month to discuss DMDs so it will be interesting to see what they say about this one.
Wow! Jan 14: The list price for Aubagio is £1037.84 per 28-tablet pack (excluding VAT) and Sanofi has estimated the annual cost of Aubagio will be £13,529 per patient per year. The company has agreed a patient access scheme with the UK Department of Health [27]. 22/01/2014 14:33:11