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“If you have MS, you can drive change”

Picture of Professor Gavin Giovannoni Professor Gavin Giovannoni is Chair of Neurology at Barts and The London School of Medicine and Dentistry and is widely credited with popularising the idea of early treatment and treating to target NEDA in MS

When did you first come across the idea of proactive treatment?

The idea is not novel: the same principle is used to treat rheumatoid arthritis and inflammatory bowel disease.

If someone with MS prefers to wait and see, or try lifestyle/diet changes, would you try and persuade them otherwise?

Yes and no. I think people with MS need to understand that MS is not a disease that can be necessarily controlled by lifestyle and diet. There are some people who do well with no treatment, regardless of lifestyle or diet; they may turn out to have benign MS in the future. If you happen to be doing well on a specific diet you might attribute it to your diet, when you would have done well regardless.

However, if you have active MS and don’t want to start a DMD, but would rather try a diet and lifestyle changes, that is fine by me. I tend to negotiate and say that “If we repeat your MRI in six months time and there is evidence that your disease is active (that is, there are new lesions or enhancing lesions) this would indicate that the lifestyle changes and diet are not working. Would you then consider starting a DMD?” Invariably people agree to this. If their disease is inactive at six months we wait and see. And if their disease is active we add in a DMD. The issue is not about DMDs versus lifestyle/diet, it is about the holistic management of MS. I personally think DMDs and lifestyle and diet are complementary to each other.

What can people with MS do if their neurologist doesn’t want to escalate to a more effective treatment?

They can get a second opinion. If you have MS you can drive change: ask pertinent questions of your neurologists and you can change the way you are treated.

What is NEDA?

No evidence of disease activity (NEDA) is a new treatment goal for multiple sclerosis. Its aim is to treat people with MS to reach a point where they are having no relapses, no disability progression and showing no new or enhancing lesions on their MRI scans. It’s based on a treatment approach that has been found to be successful in the treatment of people with cancer and rheumatoid arthritis.

In the past, treatment of people with relapsing MS has focused solely on reducing the number of relapses. However, as Eleanor writes on p14, relapses are now understood to be only the tip of the MS iceberg. There can be other MS activity that is not outwardly visible, such as so called silent lesions that do not cause a relapse or symptoms. NEDA aims to also treat this underlying activity as well as the more apparent activity, to prevent a build-up of permanent damage to nerves.

The concept of NEDA is still evolving and there are many questions still to be answered, including a debate over additional measures that could or should be included. To find out more visit mstrust.org.uk/NEDA

Drug effectiveness

In the past, DMDs for relapsing remitting MS have been mainly evaluated in clinical trials on their ability to reduce relapses. A drug’s effectiveness as defined by its ability to reduce relapses in clinical trials is only part of the story. As they each work in a different way to prevent the inflammation caused by MS, their effectiveness can vary by person. A drug that is suitable and effective for one person may not be the right one for another. The key aim of treatment is to help people with MS find the DMD that is effective for their level of MS activity while minimising the risk of serious side effects.


This article is part of the May 2015 issue of Open Door, the MS Trust’s quarterly newsletter.