Hi I am in the process of looking for a DMD. Have been reading up on bg12 and sounds like something I would like to try. I have scoured the internet, but not being medically trained I don’t understand most if the jargon. My understanding is it’s been approved for use in MS by the European health board and it’s now being appraised by NICE for efficiency and cost. Is that right? Have I missed anything else? Is it likely to be a first line treatment or reserved for those sub groups (RES etc?) or will it be reserved, due to costing, for second line treatment? I know nobody has a crystal ball, I am just looking for educated guesses as id really like to discuss the option with my neuro, but want to be clued up first. All comments and insight welcome. Thanks.
I don’t know any more details than you i’m afraid but i am interested in this myself.
I asked my neuro about it in July and he told me i definately would not get it. When i asked why he said my ms was not bad enough and it will be too expensive. I am rrms and on Rebif at the moment but would welcome an oral therapy.
From what i have read it looks like its had good results without too many side effects.
As i left my appointment the neuro said “we will have to wait and see what happens as its not available yet”
Brog64 is a member on this site. She lives in Australia. She posted a couple of weeks ago to say she was just about to start on BG12 and was going to do a blog on here to let us all know how she is getting on with it.
Teresa.x
I thought this stuff sounded pretty promising, until I read it’s the same stuff (dimethyl fumarate) that was used as a preservative on imported Chinese sofas, that caused people sitting on them to develop terrible rashes. Remember all the cases on Watchdog etc.?
No, I’m NOT kidding.
Still wish Brog every success with it, but I don’t think I’d be first in the queue, even if I was eligible (which I won’t be).
Tina
x
Hi Tina and Anon (original poster),
Relax, Tina! Yes, BG12 is made from Dimethyl Fumurate but it is processed completely differently than the anti-mould stuff they put in sofas and which is banned in most countries around the world because of its toxicity.
Processing chemicals can radically change their molecular structure and therefore their physical make up and also the impact the original product has. Think of petroleum… Now think of plastic and think of petrol. Petrol is highly toxic and will cause horrendous burns to your skin, cause brain damage if inhaled and kill you if ingested. Plastic on the other hand (whilst I’m not recommending eating it!) is a totally safe product to come in contact with. And yet they are both petroleum derivatives…
Dimethyl Fumarate is not dissimilar. It is banned in the same molecular structure as the anti-mould treatment but in a different form with a different structure it is safe to be in contact with and available as Tecfidera or BG12.
Also Fumaderm which is another compound of Dimethyl Fumarate has been used in Germany to treat Psoriasis since 1994. It has an excellent safety record and it is because of this drug that researchers found the link to MS because people treated with it who had both conditions had their MS improve.
However the psoriasis treatment and the MS treatment also differ subtly even though they are from the same derivative compound. Chemistry is complex and even a single molecular change can radically alter the effect of a drug. With the drug trials no one had a dermatitis reaction like the one found in the mould treatment.
There are side effects though, mainly gastro intestinal and a flushing of the skin so I’ll keep you all updated on that when I start it.
And now to answer the OP, Anon. So sorry for ignoring you throughout this reply, very rude of me… I am the Brog mentioned and here in Australia BG12 is available only to selected patients chosen by their neuros at this stage and then the drug is supplied free of charge by Biogen itself. It is called a Product Familiarisation Program and is almost an extension of the clinical trials in that it becomes a ‘real world’ test of its efficacy and safety. Because I was one of only a handful of people treated with Cladribine, a chemo drug that was pulled from the market half way through our treatment, I was left high and dry with no treatment options available to me apart from BG12. So I was given first go at it along with the other Cladribiners. I have been waiting desperately for this drug to become available.
I was supposed to have started it a week or so a go but because of a computer stuff up my prescription got delayed. My MS Nurse rang me last week to assure me it would be couriered out to me this week. So fingers crossed it does turn up
We are waiting here for it to be approved by our PBS (equivalent to your NICE) and then it will be available to all eligible MSers. But I have no idea whether it will be offered as a first option treatment or kept as a second line of defence just as in the UK the prescribing criteria are still in question.
Do keep an eye out for my posts on Tecfidera (BG12) though because as mentioned, once it actually arrives, I will be doing a regular blog on it, to be known at this stage as Brog’s Blog
Cheers,
B
Thank you Teresa, Tina and Brog for your replies, all good stuff. Will mention it to the neuro and see where I stand. If you don’t ask you don’t get hey? Best of luck starting your treatment B, really hope it all works well for you. X
Belinda - you can always be relied upon for a great reply. Thankyou for clearing all that up and good luck with the treatment.
I feel BG12 is the one to watch! It’s had good results in trials with minimal side effects.
It has been more effective than the injectable dmd’s in the trials.
I will look forward to reading Brog’s blog
Anon - here in England we will have to wait to see what the criteria will be to see if we can get it. It seems unclear at the moment.
Best wishes
Teresa.x
I read the NICE anticipated guidance publication dates are January 2014.
Also is there any news on the release date? Multiple Sclerosis Research: Biogen Idec delays BG12 launch in Europe