As promised yesterday the following is my talk that I have uploaded onto slideshare:MS Update 2012http://static.slidesharecdn.com/swf/ssplayer2.swf?doc=updatefor2012giovannonigg1-120624043220-phpapp01&stripped_title=ms-update-2012-13435071&userName=gavingiovannoni
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The following are my main messages:
- MS is a bad disease; it has a poor prognosis if left untreated.
- Treat early and aggressively to prevent future disability.
- Early treatment with DMT impacts on mortality, i.e. life expectancy.
- First line DMTs (injectables IFNbeta/GA) are moderately effective and safe.
- Not all MSers respond to first line DMTs (injectables IFNbeta/GA); at present we can’t predict who responds so if you fail therapy (relapses, disease progression, MRI activity) you should be switched to another therapy.
- More effective second-line therapies have risks; these risks depend on individual factors, therefore personal MSer choice is essential in deciding on which one to switch to or start.
- All current therapies target active relapsing MS; active means ongoing relapses and/or MRI activity.
- We have problems with doing trials in progressive MS; current trials need too many MSers and take too long. Therefore we need new trial designs, hence the proposal to use lumbar punctures to speed-up drug development for progressive MS.
- The good news is that there are several trials running in progressive MS (both primary and secondary progressive MS).
- Lumbar punctures don’t have to be a bad experience; using non-cutting needles and ultrasound guidance reduces post-LP complications.
- NICE has it wrong; when they assess the cost-effectiveness of new DMTs or other drugs they only assess the impact on direct NHS expenditure. NICE does not take into account indirect or societal costs; e.g. loss of work, benefits, costs of carers, etc.
- Sativex and Fampridine do not have a green light from NICE therefore we have difficult prescribing them for MSers in the UK.
The following are the two video clips of fampridine responders; you can make up your own mind if this treatment is effective or not (please note that not all MSers respond to this drug):
For those of you who asked the following is a short video clip explaining how fampridine works:
The following is the talk that was given by Dr Mark Baker in our group at the last MS Research Day:
If you have any further questions please do not hesitate to ask via the comment function on this post.
Prof G, the real problem faced by MSers, other than access to good drugs, is the poor education provided by the NHS when it comes to providing knowledge of what exactly multiple sclerosis is, and how it has an immunological phase and subsequent neurodegenerative phase. MS is not an unchanging disease, it evolves and alters its approach, attacking and then destroying. It has different faces and comes in different forms.When I was diagnosed 5 years ago, my neurologist failed to explain that relapses and progression are two distinct features of MS. It’s only through reading this blog and other sites that I now realise that to end relapses and stop progression you need different approaches and science methodologies. There is an onus on the MSer engaging in self-education, gathering information and analysis on their condition.Also, will I overdo it if I consume 10,000 IU of vD3 in pill form everyday?
Re: ".. will I overdo it if I consume 10,000 IU of vD3 in pill form everyday?"No; Bruce Hollis a world vD expert suggest that this is the dose MSers should take.
But Prof G, why then do you only take 5,000?
Re: "But Prof G, why then do you only take 5,000?"I don't have MS or a disease with an overactive immune system.
Thanks for this.If you give the presentation in 2012, will it change much i.e. are we likely to have made more advances / much better treatments on the horizon?
You said early this year that his could be a momentous year for MS research. I'm not seeing this yet – are you still hopeful?
Earlier comment should have read:If you give the presentation in 2017, will it change much i.e. are we likely to have made more advances / much better treatments on the horizon?
Re: "You said early this year that his could be a momentous year for MS research. I'm not seeing this yet – are you still hopeful?"Yes, the ball is in the FDA's and EMA's court. Let's hope they are playing to win.
Re: "If you give the presentation in 2017, will it change much i.e. are we likely to have made more advances / much better treatments on the horizon?"Yes, we may have one or two DMTs licensed for progressive MS and hopefully some new symptomatic treatments for MSers. Particularly better anti-spastic treatments and may be something for cognition and fatigue.
Prof G,"Yes, the ball is in the FDA's and EMA's court. Let's hope they are playing to win."I assume you are referring to Alemtuzumab which has recently been submitted for approval?I would really like to see this drug offered after a diagnosis of RRMS i.e. in line with your "treat early and aggressively".The people who evaluate these applications should vsiit a few care homes whee young people with advanced MS are living out their remaining days. Preventing long term disability must surely be the ultimate aim of treatments. Patients can weigh up the risks – we should have the choice to decide.
Possibly, in 6 years time, for a newly diagnosed RRMSer you are going to have the injectibles, teriflunomide, BG12, alemtuzumab and Natalizumab. This will depend on their cost- pharmas producing injectibles may drop their costs substantially to compete with the new oral drugs, and NICE's attitude- maybe alemtuzumab and natiluzimab will only be allowed to be used if you've continued to relapse on 1st line treatments. Maybe then educated patient choice will get a look in.