Barts-MS rose-tinted-odometer ★★★★★
I was attacked yesterday for painting a too bleak picture of MS outcomes and for not focusing on the fact that some pwMS actually age well and do well in the long-term. I apologise for being so negative, hence this post to address the data gap.
The best data we have on the longterm follow-up of pwMS in a ‘community-setting’ is the Gothenburg study. In Gothenburg, they were fortunate to have 50+ year systematic follow-up of an original cohort of pwMS, who were born between 1950 and 1964. Of the 202 patients with an initial relapsing-remitting course, the probability of non-progressive disease after 40 years was 22% and after 50 years it was 14%. So 1 in 7 patients with relapse-onset disease had not become secondary progressive after 50 years of follow-up. Importantly, these patients were functioning well socially. Nine of them had an EDSS of 0-2.5, and four patients had a score of 3 or 3.5, with most of their disability dating back to attacks from decades ago. These 1 in 7 patients have what I call ‘burnt-out’ MS.
Eight of these patients, who underwent a complete and detailed neuropsychological examination, showed some cognitive impairment concerning memory and executive function compared to an age and socially matched control group. This indicates that even in these ‘burnt-out ageing-well’ cohort that MS has clipped some of their cognition. i.e. they have some hidden disabilities.
At the last follow-up of this group of patients in 2009-10, when the group had reached the average age of the Swedish population life expectancy, only 13 patients remained alive and non-progressive. That is 6.5% were alive and well compared to an expected rate of 50% for the general population.
It is important to point out that as these patients are from a pre-DMT era these figures should be viewed as the worst-case-scenario. I would expect them to be much better than this now and, importantly, they will get better over time as we learn to diagnose and treat MS earlier and more effectively.
I like to think of MS outcomes as a bell-curve with a small proportion of people who can expect to age normally. But as we improve outcomes we shift the curve to the right with more and more pwMS having a good outcome.
I don’t like to think of myself as a glass-half-empty, hopefully, this bell curve will make you realise that I am a glass-half-full.
Bengt Skoog et al. A Representative Cohort of Patients With Non-Progressive Multiple Sclerosis at the Age of Normal Life Expectancy. Brain, 135 (Pt 3), 900-11 Mar 2012.
Multiple sclerosis may have a non-progressive symptomatology for decades; however, it is not clear whether the disease activity may abate completely. We identified a cohort of patients, resident in Gothenburg at the time of disease onset, between the years 1950-64 (n = 307). These geographical and temporal restrictions, along with favourable conditions for a ‘spider’ epidemiological study, were optimal for an unbiased selection; this 15-year incidence cohort was essentially followed prospectively for 37-59 years after onset. The shortest follow-up time for patients without primary or secondary progression was 45 years. For patients with an initial relapsing-remitting course and multiple sclerosis diagnosis according to the Poser criteria (n = 202), the probability of non-progressive disease after 40 years was 22% (standard error 3.0%), and after 50 years it was 14% (standard error 3.2%). For attack onset including patients with possible multiple sclerosis, the corresponding probabilities after 40 and 50 years were 35% (standard error 3.3%) and 28% (standard error 3.5%), respectively. At the last follow-up in 2009-10, when patients reached the average age of the Swedish population life expectancy, only 13 patients from the multiple sclerosis diagnosis cohort, according to the Poser criteria, remained alive and non-progressive. Their annualized attack frequency diminished with time from 0.29 to 0.015. These patients had been functioning well socially. Nine patients had an Expanded Disability Status Scale score of 0-2.5, and four patients had a score of 3 or 3.5, with deficits dating back to attacks decades ago. Eight patients participated in a complete neuropsychological examination, which showed a slight difference (P < 0.01) concerning verbal memory and executive function compared to an age and socially matched reference group, whereas results for five other cognitive domains were within the normal range. Magnetic resonance images fulfilled the Barkhof-Tintoré criteria for multiple sclerosis in 10 of 11 patients, with conspicuously few subcortical lesions relative to extensive periventricular lesions and lesions extending from the inferior midline aspect of the corpus callosum. Prediction of the non-progressive stage was possible with moderate hazard ratios and low sensitivity. Early features that predicted a non-progressive course were complete remission of the onset attack, low or moderate initial relapse frequency and-when the patients with possible multiple sclerosis were included-dominating afferent symptoms. The clinical disease activity had abated in these 13 patients, with the caveat that transition to secondary progression continued to occur after four decades, albeit with decreasing risk.
10 thoughts on “Glass-half-full”
1 in 7 is not in my opinion a glass-half-full. It is pretty empty to me. You may want to dial down the rheostat on your rose-tinted-odometer. As far as I am concerned this should be zero stars.
The 1 in 7 is the worst-case scenario, with more effective treatments this figure is going to much. much. higher. Maybe 1 in 2 people for alemtuzmabers and HSCTers.
How about cladribines?
Yeah, I was wondering about cladribiners as well
We just don’t have data. Interferon-beta was licensed in Europe in 1995, GA in 2001 and Natalizumab in 2007. We are 25+ years away from having 50-year follow-up data on the so-called treated cohorts.
but what about their side effects?
If people take them are the side effects almost inevitable?
Are people stupid for thinking that they are going to be the 1 in 5 whose MS is gonna not be that bad?
“the probability of non-progressive disease after 40 years was 22% (standard error 3.0%), and after 50 years it was 14%”
Then why has there only been only one man who went 50 years w/ no progression on this blog..and he said his condition declined like night/day right after that..?
And only one woman who went 40 years no progression and who also then went downhill.
Study is so small..maybe picked up abnormal genetics.
Also no ppms here conveniently…guy on youtube was in Ocrevus trial 2 years…in wheelchair in less than a year and death in 8 years this month… unclevroomvroom on youtube
Also what studies show dmt delays progression..? Pharma never did the studies…because
why kill the DMT goose who lays the golden $$$ egg.
Relapse recovery does though cause it’s been studied.
“Half of the good recoverers developed progressive MS by 30.2 years after MS onset, whereas half of the poor recoverers developed progressive MS by 8.3 years after MS onset ”
As one of those who reacted to your post yesterday I’d like to thank you for looking to redress the balance with this post today.