In the past, people diagnosed with MS were sometimes told to ‘wait and see’ how their MS developed before making decisions about whether to consider disease modifying drugs. But the new MS treatment guidelines published by the Association of British Neurologists in June (see p4) recommend that people with MS should begin treatment as early as possible. Are we entering a new era of proactive MS care? Open Door finds out what proactive treatment means for people with MS and MS services
If you have relapsing remitting MS you currently have more treatment options than ever. There are now 11 approved disease modifying drugs (DMDs) available in the UK, and more due for appraisal in the coming years.
However, despite these options, until recently, it wasn’t always clear when you ought to begin treatment. If your MS seemed to be highly active and you were having multiple relapses in a short space of time, your neurologist might have advised you to try a DMD. But what if you feel that, for the time, being your health seems to be fine?
The new treatment guidelines published by the Association of British Neurologists in June are the official statement of a philosophy that has been gaining ground among MS specialist health professionals for some time. Today some neurologists believe that starting DMDs as soon as possible after diagnosis (and in some cases, even before diagnosis if you have experienced a neurological episode classified as clinically isolated syndrome) significantly improves your chances of staying healthy in the long term.
Many of them also believe that, once you’ve started treatment, you should be regularly monitored with MRI scans, and, if your chosen option doesn’t seem to be reducing MS activity, you should
be moved onto other, possibly more effective treatments. And this should be repeated until the evidence on scans and clinic suggests that there is no evidence of disease activity (NEDA).
You can increasingly find discussion of these treatment options when searching for information about MS online, sometimes in the context of quite complex scientific research, and often accompanied with a dizzying range of technical terms and acronyms.
For this issue of Open Door we wanted to get to grips with the arguments for considering early treatment in an open and accessible way. Over the coming pages, we explain some of the terms and details of the theories, talk to some neurologists who now consider that early, monitored treatment is the best way of helping people with MS, and hear from two women about how they made their own treatment decisions.
Of course, as even the most evangelical proponent of early, aggressive treatment would tell you, the choice of treatment – which, when and how – should be up to the individual, in partnership with their specialist health professionals. Each person will have their own calculation of risks and benefits of particular options – including non-treatment – and each person will have to consider their own situation (including career and family plans) before making a decision.
The MS Trust is currently in the process of redeveloping MS Decisions, the online tool that can support you in your treatment decisions, to be launched in October 2015 and we’d be very interested in your perspective on these issues. Email firstname.lastname@example.org with your thoughts
EMA recommends temporary restriction on use of Lemtrada
12 April 2019
The European Medicines Agency has recommended a temporary restriction on people who should start treatment with Lemtrada while a review of side effects is carried out.
How fundraising for the MS Trust helps me to help my daughter
12 April 2019
Nick is taking part in the Great North Run for the third time in September and this year his daughter Amie will be joining him on Team MS Trust for her first half marathon. Here, Nick and Amie tell us about the inspiration behind their fundraising.