Time is brain; can we really afford not to treat MS early? May be we need a high-profile legal case to change behaviour? #ClinicSpeak #BrainHealth #MSBlog
I get quite tired of saying ‘early effective treatment‘, ‘treat-2-target of NEDA (no evident disease activity)’, ‘shredding reserve‘, ‘ brain health‘, ‘time is brain‘, ‘MS is a preventable dementia‘, etc. The Swedish registry data below provides yet more real-life data showing that delayed treatment has a price. Those MSers who started treatment 3-years from disease onset were much more likely to reach a disability outcome compared to MSers who started treatment within a year of MS onset. This data supports the 21-year mortality data of the pivotal interferon-beta-1b trial that showed that those subjects who had to wait 3-years to be treated with interferon were ~50% more likely to be dead at 21 years compared to those subjects who were treated earlier. Importantly, the majority of the deaths (75%) in this study were MS-related and not due to some other effect of interferon-beta.
Despite the overwhelming evidence supporting early treatment there are still healthcare systems and individual HCPs who delay access to treatments. Often this is based on the assumption that a lot of MSers will turn out to have benign disease and therefore if you treat early you will be treating MSers with benign disease who don’t need a DMT. I hope we have convinced you over the many years of running this blog that there is very little data to support this position or dare I say misconception. If you take a 40+ year view of MS there are very few MSers who turn-out to have benign MS. The primary motivation behind our ‘Brain Health: Time Matters‘ policy document was to counteract this surprisingly pervasive misconception. If you have not done so already I would urge you to read the document and to pledge your support. We need numbers to make things happen. Thank you.
Despite the overwhelming evidence supporting early treatment there are still healthcare systems and individual HCPs who delay access to treatments. Often this is based on the assumption that a lot of MSers will turn out to have benign disease and therefore if you treat early you will be treating MSers with benign disease who don’t need a DMT. I hope we have convinced you over the many years of running this blog that there is very little data to support this position or dare I say misconception. If you take a 40+ year view of MS there are very few MSers who turn-out to have benign MS. The primary motivation behind our ‘Brain Health: Time Matters‘ policy document was to counteract this surprisingly pervasive misconception. If you have not done so already I would urge you to read the document and to pledge your support. We need numbers to make things happen. Thank you.
Kavaliunas et al. Importance of early treatment initiation in the clinical course of multiple sclerosis. Mult Scler. 2016 Oct 17. pii: 1352458516675039.
OBJECTIVES: The aim of this study was to identify factors influencing the long-term clinical progression of multiple sclerosis (MS). A special objective was to investigate whether early treatment decisions influence outcome.
METHODS: We included 639 patients diagnosed with MS from 2001 to 2007. The median follow-up time was 99 months (8.25 years). Cox regression models were applied to identify factors correlating with the outcome variable defined as time from treatment start to irreversible score 4 of the Expanded Disability Status Scale (EDSS).
RESULTS: Patients initiated on treatment later had a greater risk of reaching EDSS 4 (hazard ratio of 1.074 (95% confidence interval (CI), 1.048-1.101)), increased by 7.4% for every year of delay in treatment start after MS onset. Patients who started treatment after 3 years from MS onset reached the outcome sooner with hazard ratio of 2.64 (95% CI, 1.71-4.08) compared with the patients who started treatment within 1 year from MS onset. Baseline EDSS and age at onset were found to be predictive factors of disability progression.
CONCLUSION: Early treatment initiation was associated with a better clinical outcome. In addition, we confirmed the well-established prognostic factors of late age at onset and early disability.
CoI: multiple
Next year we're entering Prof G for the World Treacle Wading Championships.
Does all this apply equally to all "categories" of MS? We are always being told there is no DMT for PPMS anyway…
Re: "Does all this apply equally to all "categories" of MS? "Yes, it will once we have ocrelizumab licensed and available. I do have concerns though that ocrelizumab may not get through NICE; this is based on how NICE assessed cost-effectiveness. At the moment PPMS has to treated with unlicensed drugs or off-label.
Safety is also a concern with Ocrelizumab. At least for some of us.
How does this affect a non responder to Rebif, who then goes on to have alemtuzumab? Although they started treatment early, it wasn't effective
It is all about limiting damage as much as possible. As long as they were not to active on Rebif. The problem I have is smouldering MS, i.e. MS that is not active clinically but on MRI. A lot of MSers, at least in the UK, are not being monitored using MRI and are being missed.
What about female pwMS who want to have children before taking strong drugs? What options do they have?
RE: "What about female pwMS who want to have children before taking strong drugs?"They may choose not to start treatment and delay it until after their pregnancy. Another option is induction treatments (alemtuzumab or cladribine); these are PIRTs (pulsed immune reconstitution therapies) and are out of the system quite quickly and allow pregnancy to occur once the immune system has reconstituted and MS disease activity is under control.
Thanks. I'm sending this article to the two uk neurologists I went to see when I first had brain and spine lesions. They did absolutely nothing. How can that be possible?
Same here. The neuro didn't even mention DMT's and I was on my second severe relapse.
Ps I'm willing to be high profile legal case you say is beeded Prof G. I'm just worried about the energy it would require and whether I'd stand a chance….?
Have you taken your complaint to the Parliamentary and Health Service Ombudsman already? First you need to complain direct to the hospital and get a response before taking it to the Ombudsman.
No I haven't done any of those. The only complaint I made at the time was to write to the of the neuros himself. He called me to apologise. My complaint was not about not being given a dmt choice but about how he told me did not take me seriously when I had my first consultation. How he told me everyone has the sensations I was suffering with at the time. And how he told me that I had two young children (sexist) and so was feeling tired because of them and working outside the home. I believed him when he told meDmts were mostly ineffective and had big siede effects. He diagnosed cis. This is coming up to three years ago. I'm wondering could I still complain? I was diagnosed with ms in Jan this year. Only now having read so much do I realise how important dmts and starting themEarly are. Thanks to prof G for raising this awareness.
Could I take the position that had I been offered a dmt I may not have gone from cis to ms in a year? That had I been on a dmt I may have not developed ms so soon? Think I need an experts opinion here.
PROF G & THE TEAM: in support of the Brain Health Guide please consider flagging up for everyone to watch the 11 minute TED TALK by neuroscientist Sandrine Thuret You can grow new brain cells. Here's how. Much of her quick and accessible summary reiterates the guide content, but the points on diet, most especially the texture of food was startling and not something I had heard reference to before.