What is the journey in the years ahead?
For most people with multiple sclerosis, the MS journey begins with a few unusual symptoms, such as tingling, numbness or vision problems, which may persist for a few days and then go away. The problem can be chalked up to overwork, stress, injury, sleeping funny or something you ate. Few people have persistent symptoms; perhaps 10% or so will have disability that seems to get worse (Dahlke and colleagues. Mult Scler 2021;27:2062-2076). Many will not experience another flare-up of symptoms for several years.
This may explain why many people are not diagnosed with MS until their late thirties. A database analysis of over 14,000 people with MS found that they were typically diagnosed when they were 36 years old and had been living with symptoms for at least three years (Kalincik and colleagues. Neurology 2021;96:e783–e797).
But what happens after a person is diagnosed with MS?
A Canadian study looked at this question and found that the median age for requiring a cane was 58 years for men and 60 years for women (Tremlett and colleagues. Neurology 2006;66:172-177). (‘Median’ means that one-half of the group had more disability and one-half had less). However, it is important to note that once a person is in their late fifties, not all of the disability is due to MS. One study found that after age 55, people without MS in the general population have a significant level of disability just because of aging and various medical conditions (Lynch and colleagues. Mult Scler Relat Disord 2021;49:102724).
Does treatment make a difference?
Various studies have examined what happens over the longer term in people taking a disease-modifying therapy (DMT) for their MS. The most recent looked at people enrolled in the original Tecfidera clinical trials and who have now been on treatment for up to 13 years (Gold and colleagues. Mult Scler 2022;28 801-816). At the start of the study, people were 39 years of age on average and had typically been having MS symptoms for 10 years. By the time people were in their late forties, there was minimal disability in the group overall. About 72% of people on continuous treatment with Tecfidera experienced no worsening of their disability. Quality of life measures (physical and psychological) were stable over the 10-year period, suggesting that people had not seen any deterioration in their physical abilities, mental health or activities of daily life.
These results suggest that a person who starts a treatment and takes it continuously can do very well for over a decade, which may suggest that they will continue to do well later in life. A limitation of the analysis, however, was that many people stopped Tecfidera for various reasons during the course of the study. Hopefully, they switched to another medication so they continued to benefit from another treatment.
With the current crop of DMTs, it is especially important to start treatment as soon as possible after diagnosis. This is the period when treatments are most effective. This was shown in a recent analysis of people in a drug trials database (Lublin and colleagues. Brain 2022, epublished February 1, 2022). The researchers found that people taking a DMT for their MS delayed the development of significant disability by 3.5 years. (Significant disability was defined as a score of 4 on the Expanded Disability Status Scale [EDSS]; this means people were able to walk up to 500 metres without rest). However, a second observation from the researchers was more telling: the time to requiring a cane (an EDSS score of 6) was delayed 3.1 years. The 3.5-year delay and the 3.1-year delay were not additive. In other words, all of the benefit of treatment (slowing disability by 3.5 years) was seen in the initial years before a person developed significant disability. Thereafter, treatment offered little benefit with respect to disability.
Starting a treatment soon after diagnosis may not seem urgent when you are feeling well and not experiencing any impairments. However, there is an often-undetected, slow-moving process of nerve damage that is occurring – even early on – that may ultimately produce disability. A ‘stitch in time’ with one of the many DMTs available may be able to delay some of this disability and make the journey easier in the years ahead.
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