Do Relapses Really Matter?
The lunchtime audience chuckled when Dr. Fred Lublin announced a spoiler alert to his opening talk at the Consortium for MS Centers 2016 Annual Meeting, telling us that "yes, relapses really do matter." He gave the John F. Kurtzke Memorial Lecture: Do MS Relapses Really Matter? to a crowd of almost 2,000 people, comprised mainly of MS health care providers from all disciplines.
The premise of his talk was once upon a time in the world of treating MS, it was believed that relapses were not significant in the disease progression, but mainly a temporary problem. It is now known to be otherwise and the evidence for treating multiple sclerosis early and as aggressively as necessary is growing.
Dr. Lublin talked on the points most known about an MS relapse, including:
- Relapses can produces considerable immediate disability
- Relapses have an obvious physical impact
- Relapses take and emotional toll, particularly with the associated uncertainty of outcome
- The financial impact created by the need for increased healthcare and the costs associated with not being able to work or having additional needs due to a relapse
People affected by MS understand that a relapse is serious and can create considerable problems, and Dr. Lublin’s list includes problems that we all know exist and the majority of us have experienced at one time or another. But what we might not fully understand is what happens once the relapse is resolved. It turns out that researchers and clinicians struggle with the same questions we often hear in the MS community : what is a relapse and how will the person be after the relapse is done.
Dr. Lublin shared research that shows relapses leave residual disability but there are still mixed ways that disability is measured and is often dependent on the researchers and their desired outcome. Not coincidentally, he was giving the opening talk, named in memory of the doctor who developed the Kurtzke Expanded Disability Status Scale (EDSS). The EDSS is less than perfect as a measurement tool for disability but for now it is the best one clinicians have available to use, according to Dr. Lublin.
He talked about the difference of disability from a relapse versus gradual progression of the disease, and says those differences cans be found clinically, pathologically through demyelination and axonal loss, and immunologically. Those differences have been shown in a few studies, such as the CombiRx study where people who had relapses had disability and disease progression measured on the EDSS worse than the study participants who had no relapses. The major measurement missing from most studies is what continues to happen to the person with MS once a study has been concluded.
So what does this all mean?
People who have many relapses early in their MS disease course are more likely to have greater disability than people with MS who have fewer relapses. If clinicians are able to alter the relapse rate, they will also positively affect the rate of disability. This translates to the need for early treatment for people when they are diagnosed with MS and not waiting to allow relapses and lasting disability to occur. Dr. Lublin’s lecture builds on the existing evidence that getting on a treatment for MS is really important for our long term health. In the long term picture, relapses do matter.
Wishing you well,
Do you celebrate your MS Anniversary?