my local NHS failed for 12yrs to treat my ms and i can’t disclose everything as my new hospital as launched an internal enquiry due to mal practice so my new ms consultant as been told to treat and now so they offered me either figmilod but i have internuclear opthalmegiea so i will flare my nerves on my retinas so they have now decided the next one is BG12 this is in trial but i have a allergy to some metals and cannuals are a big no. Would some one please explain what sativex is and BG12 as it that new no info is ready and in some NHS hospitals it is hush mine is one.
BG12 is a late phase trial pill with really promising results - it’s expected to be launched in the UK in 2013 I think. It is already used to treat psoriasis and has an excellent safety profile. The main side effect that I know of in MS trials to date is “flushing” in the first month of treatment (by which I assume it means going red and getting hot). The results to date are better than the injectables - something like 45% reduction in relapses versus 30%.
It is really exciting! If I had the choice of fingolimod or BG12, I would take BG12 every time.
If you go to http://multiple-sclerosis-research.blogspot.co.uk/ and put BG12 into the search box (it’s a very long, narrow box just under the different page options), you will find various articles about it.
Sativex is derived from cannabis. You spray it under your tongue to help spasticity and pain. It works for about 50% of patients (the 50% is from memory, so could be wrong). It is normally the third thing that neuros try: baclofen then tizanidine and then Sativex, but many PCTs won’t fund it because it’s expensive and doesn’t help everyone - so a lot of MSers struggle to get it.
Really pleased that you got someone to finally DO something to help you! Whatever you choose, I hope it works brilliantly for you.
I am due to start BG12 later this year. I will be part of the early release Patient Familiarisation Program in Australia and will be getting BG12 early because I have been on Cladribine which you can only take for 2 years and my 2 years are up in August.
BG12 is lookig like being the most effective of the oral DMDs with the best safety profile at ths stage. Biogen are the makers of it and they submitted an approval form to the FDA a few days ago and they will be starting the process for EU approval in the next few days.
The link from neuronerd is really useful and I have included a couple more for you too.
Sorry, I can’t help you with Sativex beyond saying it is a cannabis derivative treatment used as a nasal spray to relieve the pain of spasticity and neurogenic pain. It isn’t available in Australia and I am not sure about it in the UK. Hopefully someone will be along soon with more…
I loved the Cladrinine. So sad merck decided to withdraw it rather than set up the final phase of the trials to get it past the FDA and EU
It was approved here in Australia and a group of about 120 of us were given the drug by Merck.
You take the tablets for 5 days and then have a months break and then take another 5 days worth. Then nothing for 11 months and repeat the two batches of tablets. And then that is it for ever and ever.
I had no trouble with it at all. The worst was feeling mildly nauseous for the first 24 hours but apart from that no side effects at all.
I have had one relpse since I started it and I didn’t even need steroids for it
Prior to starting on the Cladribine I was having back to back relapses and I was in hospital 5 times in the previous year for IV steorids and for nursing care.
It was an absolute doddle for me and it is very sad that Merck decided it wasn’t worth spending more money to get the approval. My uderstanding is that by the time they would had got it up for approval Gilenya and even BG12 would be on the market and that Merck wouldn’t be able to make Cladribie competitive in the market place so they pulled the plug.
The safety profile isn’t that bad at all. There is a small increased risk of developing a cancer but truly, anyone can get cancer anyway. And cancer caught early is at least curable nowadays. I definitely felt the benefits outweighed any risk.
Taking 20 tablets over 2 years sure as hell beat the (rude word for p00P) out of stabbing myself with needles and having appalling allergic reactions to the injectables.
Thanks for the information everyone. I’ve never heard of BG12 before! Does anyone know if it will be available to all with rrms? or is it like fingolymod - and available to severe rrms or people who continue to relapse on the DMD’s?
It sounds exciting and without serious side effects and welcome news to anyone who dislikes injecting.
Hello Nina, welcome to the forum. It takes a little while to figure out how the forum works. As Boudica said, you’ve tagged your post onto an old thread that’s now out of date. The original thread was about Tecfidera, a disease modifying drug (DMD) for people with relapsing remitting MS (RRMS). When it was first trialed and ultimately licensed, it was called BG12 - a not very inspiring name!
You’ve asked about Cladribine for secondary progressive (SPMS). It’s not licensed for SP, so it’s unlikely anyone would be taking it. The license is only for RRMS. Unfortunately there are no DMD’s licensed for SPMS in the U.K. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more information on DMDs.
If you want to start a new topic, hit the button marked New Thread, give your thread a title and write whatever crosses your mind.
