WEBVTT
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It's September 8th, and we have a lot to talk about.
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Relapses make life with MS unpredictable. Understanding what they are,
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why they happen, and how they're best managed can help make a relapse less scary and easier to navigate.
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Our guest today is Dr. Gabriela Karolidis, a board-certified neurologist and
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neuroimmunologist at Thomas Jefferson University, where she also serves as a
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clinical assistant professor.
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But before we get to my conversation with Dr. Karolidis, there are a few other
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things that you should know about.
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Since 2020, the number of people living with multiple sclerosis worldwide was
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estimated to be 2.8 million.
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That's the figure that's been shared across advocacy, research, and clinical trials.
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Last week, that benchmark officially shifted. According to a landmark update
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to the Atlas of MS published by the Multiple Sclerosis International Federation,
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the global prevalence of MS has officially surpassed 3 million.
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The new number is 3.1 million people living with MS globally.
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So let's break down what this update tells us, why prevalence is climbing,
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and why these numbers represent a critical baseline as the way MS is diagnosed is changing.
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This 2024 update drew on data from 133 countries Representing roughly 93% of the world's population,
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And when you look at the raw rate per capita Global prevalence has climbed to 38.1 per 100,000 people,
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Now to put that trend in MS prevalence in perspective In 2013,
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the global rate was 24.8 per 100,000.
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By 2020, it had reached 35.5 per 100,000.
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That means over the past decade, MS prevalence per capita has jumped 54%.
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Now, when people hear that more people have MS today than a decade ago,
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the first question that pops up is, does this mean the risk of developing MS
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is actually increasing?
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The research team behind this work was quick to point out that while environmental
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shifts can't be ruled out, the primary drivers are actually far more encouraging.
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First, diagnostic tools and
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clinical recognition of MS have improved significantly around the world.
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So MS is being detected now, when in years past, it wouldn't have been.
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And as we've discussed before on this podcast, people with MS are living longer.
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Reductions in mortality and access to disease-modifying therapies mean people
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with MS are surviving and aging with the disease.
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When survival increases, prevalence naturally goes up, even if the annual number
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of new MS diagnoses remains relatively steady.
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There are two specific findings in this update that do require some discussion.
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First, pediatric MS. Now, historically, data on children and adolescents has been extremely scarce.
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In 2013, the Atlas of MS recorded just 7,000 pediatric cases worldwide.
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In the updated 2024 report, that number surged to over 40,000 children and adolescents
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across 59 reporting countries.
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Experts emphasize this isn't necessarily an epidemic of childhood onset.
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Rather, it reflects clinicians finally having the training and diagnostic awareness
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to identify MS in young people who were previously overlooked or misdiagnosed.
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Second, the data highlights a stark global divide.
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Prevalence remains highest in Europe at 157 per 100,000,
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and the Americas, around 109 per 100,000, while low-income countries reported
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an average of just 3.3 per 100,000.
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As the paper's authors point out, 83% of all countries still report substantial
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barriers to getting an MS diagnosis,
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including shortages of neurologists, high personal health care costs, and a lack of MRI access.
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In many parts of the world, people aren't missing from the data because they don't have MS.
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They're absent because they never received a diagnosis.
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When we move from prevalence to incidence, data from 91 countries indicates
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that roughly 120,000 people are newly diagnosed with MS each year,
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or about 2.1 per 100,000 people annually,
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with women continuing to represent about 70% of all the MS cases globally.
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And capturing these numbers is particularly important as the global neurology
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community is in the process of adopting the updated 2024 McDonald criteria for diagnosing MS.
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As we've often discussed, the revised diagnostic criteria allow for earlier
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confirmation of disease activity,
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and reclassify certain presentations like radiological isolated syndrome or RIS as early MS.
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As those updated criteria enter clinical practice, prevalence numbers are going
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to increase, and the updated 2024 atlas provides the empirical baseline needed
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to measure that transition accurately.
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It's important to realize that counting every person with MS isn't just an academic exercise.
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These numbers impact health care policy, drug pricing negotiations,
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and how international health bodies like the World Health Organization allocate neurological care.
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And 3.1 million people represent a clear mandate for equitable access to diagnosis
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and treatment worldwide.
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If you'd like to review the research paper or the raw data, you'll find links
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to the paper and to the Atlas of MS in today's show notes.
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If you or someone close to you lives with MS, you're probably familiar with
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the typical visit to the clinic.
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Doctors commonly rely on measures like the Expanded Disability Status Scale,
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or EDSS, to evaluate balance and functional abilities and the timed 25-foot
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walk to measure walking speed.
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But those assessments are snapshots in time. They can only capture how an individual
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is functioning in that exam room for a few minutes every few months.
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And they miss how symptoms like fatigue, heat sensitivity, and natural daily
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rhythms can cause mobility to fluctuate throughout the day.
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Newly published study results suggest wearable activity trackers can help to
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fill out a more complete picture of an individual's mobility.
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Researchers at the University of California, San Francisco, analyzed step count
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data from 529 adults between the ages of 18 and 65 with primary or secondary progressive MS,
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who wore Fitbit devices that tracked their movements around the clock,
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along with clinic checkups scheduled every three months.
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The UCSF research team examined this continuous minute-by-minute step data to
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map out how physical activity changes across an individual's typical day.
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In healthy adults, physical activity usually picks up in the morning,
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peaks around midday, and tapers off into the evening.
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In people with progressive MS, that pattern is different, especially during
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the late morning and afternoon hours, and the study data showed these differences were substantial.
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Compared to individuals with mild disability who did not require walking aids,
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scoring 3 to 3.5 on the EDSS,
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midday steps were roughly 50% lower for individuals with an EDSS score of 6
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and 70% lower for those with a score of 6.5, which indicates the need for a cane,
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crutches, or another walking aid.
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On the timed 25-foot walk, participants who took 8 seconds or longer to complete
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the distance took about 50% fewer midday steps compared to those who finished in under 6 seconds.
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The researchers found that while EDSS scores showed a stronger connection to
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daily step patterns than walking speed alone, combining both tests provided the clearest picture.
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Among the specific neurological functions assessed, walking ability had the
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strongest association with daily step counts, followed closely by motor function and coordination.
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So what does this mean? Because MS symptoms shift throughout the day,
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the study authors note that real-time continuous step profiles could serve as
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practical markers of physical performance.
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Instead of replacing clinical tests, wearable data could complement clinic visits
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and patient-reported outcomes,
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potentially helping neurologists identify exactly when mobility drops during
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the day, and ensuring that interventions like physical therapy were optimally
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timed for an individual.
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And optimally timing that PT session should lead to the patient getting a lot more benefit from it.
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If you'd like to review the details of this study, you'll find a link in today's show notes.
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For years, vitamin D has drawn significant interest in MS care.
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It's been noted that people with MS often have low levels of vitamin D.
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And because vitamin D plays a role in immune regulation, many patients,
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clinicians, and researchers have wondered whether taking vitamin D supplements
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could have a direct impact on managing MS.
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And the jury still seems to be out on this. A newly published systematic review
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of vitamin D clinical trials shows that the clinical evidence remains, well, inconsistent.
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Researchers analyzed published clinical trials evaluating vitamin D supplements
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in adults with MS across varied treatment durations, ranging anywhere from six months up to four years.
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The trials evaluated different forms and dosages of both naturally occurring
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vitamin D and lab-made vitamin D.
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And when it came to the effect of vitamin D supplements on MS relapses,
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the results were somewhat mixed.
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Five out of the six randomized controlled trials that assessed relapse outcomes
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found no statistically significant reduction in relapse rates,
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whether vitamin D was taken alone or alongside standard disease-modifying therapies.
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Only one clinical trial reported a significant benefit.
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Participants receiving one microgram a day of a lab-made version of vitamin
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D had a 10% relapse rate compared to a 32% relapse rate among those study participants receiving a placebo,
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and that represents an 80% reduction in relapse risk.
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Interestingly, the researchers noted that while relapses were largely unchanged,
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vitamin D did appear to have a more measurable impact on MRI scans,
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but even those findings were mixed.
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For example, in one clinical trial, adding naturally occurring vitamin D to
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ReBIF significantly reduced active lesions and overall lesion burden.
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And a secondary analysis of one of the trials included in this study found that
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trial participants receiving daily vitamin D alongside their treatment were
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more likely to remain free of new or enlarging brain lesions.
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Yet other studies showed conflicting results with no significant change in lesion
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counts. Some showed mixed results.
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Well, the research team pointed out several factors that by definition complicated their analysis.
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They found that baseline vitamin D levels varied widely among trial participants,
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and differences in formulations, dosages, and study lengths made cross-study
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comparisons very difficult.
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It also remains unclear whether people with an existing vitamin D deficiency
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respond differently to vitamin D supplements than those people with sufficient vitamin D levels.
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The researchers concluded that current data does not support high-dose vitamin
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D supplementation as a standalone treatment or as a replacement for standard
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disease-modifying therapies.
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And while taking vitamin D may still be useful in correcting an individual's
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nutritional deficiency,
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the authors called for larger randomized controlled trials to clarify whether
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vitamin D supplements offer any disease-modifying benefits beyond maintaining
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healthy vitamin D baseline levels.
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Now, if you'd like to review the details of this analysis, you'll find that
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link in today's show notes.
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When we discuss MS-related cognitive dysfunction, the conversation usually focuses
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on brain lesions, atrophy, and disease progression.
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But how much do our living environments, social ties, and even our economic
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backgrounds influence cognitive outcomes?
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Researchers from the University of Washington and the University of Michigan
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set out to investigate how social and socioeconomic factors connect to cognitive
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performance among people living with MS,
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and whether those associations differ by race.
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The researchers conducted a secondary analysis evaluating 274 adults living with MS.
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The average age of the study participants was about 51, 77.4% of the group was
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female, and 72.3% were white.
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To capture a comprehensive look at socioeconomic circumstances,
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the team evaluated four key factors—educational attainment,
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employment status, marital or cohabitation status,
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and neighborhood disadvantage, quantified using the Area Deprivation Index,
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which is a tool that measures and ranks neighborhoods by their socioeconomic disadvantage.
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Study participants completed a number of cognitive evaluations.
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These included self-reported cognitive abilities, as well as several objective,
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performance-based assessments.
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And for those of you who are detail-oriented, these assessments included the
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NIH Toolbox Cognition Battery, the Symbol Digit Modalities Test,
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the PACE Auditory Serial Addition Test, and the RAY Auditory Verbal Learning Test.
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The data showed that adverse social and socioeconomic conditions were consistently
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tied to poorer cognitive performance.
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Lower levels of education, unemployment, being unmarried, and living in neighborhoods
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with greater disadvantage each showed significant negative associations across
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all the cognitive measures.
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Additionally, the research team found that non-white participants performed
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worse across the objective cognitive tests compared to white participants.
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And race moderated some of these relationships. Specifically,
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the negative impacts of being unmarried and living with greater neighborhood disadvantage
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were more pronounced among non-white individuals with MS than among white individuals with MS.
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The researchers concluded that social disadvantage has a direct,
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measurable association with cognitive outcomes in MS, carrying a disproportionate
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burden for non-white individuals.
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These findings remind us that conversations about inequities in MS care and
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research have to go beyond issues related to access.
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They should serve as a reminder to clinicians that evaluating cognitive risk
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in an individual living with MS can't happen in a vacuum.
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Capturing the full picture of a person's cognitive health means factoring in
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their social context and even their zip code.
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If you'd like to review the details of this study, you'll find that link in today's show notes.
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Over the past few years, one of the most widely debated strategies in MS care
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has centered on how aggressively to treat MS right from the time of diagnosis.
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Do you start with a moderate-efficacy therapy that carries relatively minor
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risk and then escalate to a more powerful therapy if disease activity continues?
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Or do you start immediately with a high-efficacy disease-modifying therapy?
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While early treatment with high-efficacy DMTs has been shown to be effective
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at stopping MS relapses,
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their effectiveness at stopping disability worsening that accumulates quietly
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in the background, a process known as progression independent of relapse activity, or PIRA,
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well, that remains uncertain.
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Now, a nationwide study from Denmark may begin to provide answers to that question.
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Researchers from the Danish Multiple Sclerosis Registry at Copenhagen University
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Hospital examined data from 3,316 adults living with MS who began treatment between 2012 and 2022.
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2,722 of these patients began their treatment on moderate-efficacy therapies
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with the option to escalate, and 594 patients initiated treatment using high-efficacy therapies.
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These patients were followed for between one and a half and just over 13 years,
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and during this follow-up period, the research team tracked the time to an individual's
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first Pira event and their annualized relapse rate. Here's what they discovered.
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When it came to acute relapses, starting early with a high-efficacy therapy
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delivered a clear advantage.
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Early initiation of a high-efficacy DMT was associated with a 40% reduction
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in the annualized relapse rate.
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And by the way, this provides me with an opportunity to remind you that the evidence is clear.
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Starting a DMT early and staying on a DMT delivers real benefits when it comes to your quality of life.
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Getting back to the study, when the researchers looked at progression independent
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of relapse activity, the results told a different story.
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When it came to the time to a patient's first Pira event, there was no statistically
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significant difference between the two treatment strategies being compared.
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I think these results highlight a critical reality in modern MS care.
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While today's high-efficacy therapies excel at suppressing the peripheral inflammatory
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attacks that cause relapses,
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they don't appear to significantly alter the underlying biology-driving progression
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that occurs independently of those relapses,
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and that underscores a significant unmet need and a massive therapeutic gap.
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Developing treatments capable of targeting the compartmentalized disease processes
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that drive long-term disability accumulation should be at the top of every MS
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researcher's to-do list.
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And to my friends in the pharmaceutical industry, instead of focusing on one
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more therapy to treat relapsing MS, perhaps this is where your research and
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development dollars would be better spent.
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When it comes to understanding what will and won't effectively stop progression
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independent of relapse activity, this research from Denmark represents a very tip of the iceberg.
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We can expect to see a lot more research in this area in the near-term,
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in the mid-term, and long-term future.
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Meanwhile, if you'd like to review the details of this study,
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you'll find that link in today's show notes.
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If you're an adult living with MS and you use a wheelchair or scooter,
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you may be eligible to participate in a study focused on fall prevention.
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It's being conducted by the Disability, Participation, and Quality of Life Research
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Laboratory at the University of Illinois.
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In the study, you'll learn ways to prevent and manage falls with the goal of
00:21:32.030 --> 00:21:37.430
participating in enjoyable activities at home and in your community without risk.
00:21:38.070 --> 00:21:43.160
Study participants will be randomly assigned to one of two six-week fall prevention
00:21:43.160 --> 00:21:45.350
and management education programs.
00:21:45.970 --> 00:21:51.150
Participants will be asked to complete three online surveys and track the frequency
00:21:51.150 --> 00:21:53.790
of their falls over a 14-week period.
00:21:54.540 --> 00:22:02.260
Compensation for your participation will be in the form of at least $180 in Amazon gift cards.
00:22:03.140 --> 00:22:16.020
To learn more or check your eligibility for this study, you can email dpqol-fallprev at illinois.edu,
00:22:16.530 --> 00:22:19.830
and you'll find that link in today's show notes.
00:22:21.320 --> 00:22:24.810
I've always believed that one of the most challenging aspects of living with
00:22:24.810 --> 00:22:30.810
MS is its unpredictability, not knowing what may lie right around the corner
00:22:30.810 --> 00:22:34.740
when it comes to symptom worsening, when it comes to relapses.
00:22:35.350 --> 00:22:39.490
That's why I'm happy to be joined today by Dr. Gabriela Karolidis,
00:22:39.780 --> 00:22:43.440
who's going to demystify MS relapses,
00:22:44.070 --> 00:22:48.260
help us understand why they happen, what's happening when they occur,
00:22:48.540 --> 00:22:50.500
and how they can best be managed.
00:22:50.880 --> 00:22:54.660
In a moment, we'll meet my guest, Dr. Gabriela Karolidis.
00:22:57.790 --> 00:23:02.590
Relapses make life with MS unpredictable. Understanding what they are,
00:23:02.590 --> 00:23:09.190
why they happen, and how they're best managed can help make relapses less scary and easier to navigate.
00:23:09.990 --> 00:23:14.890
Joining me today is Dr. Gabriela Karolidis, a board-certified neurologist and
00:23:14.890 --> 00:23:19.810
neuroimmunologist at Thomas Jefferson University, where she also serves as a
00:23:19.810 --> 00:23:21.330
clinical assistant professor.
00:23:21.920 --> 00:23:24.030
Welcome to the podcast, Dr. Karolidis.
00:23:24.700 --> 00:23:26.740
Thank you for having me. It's my pleasure to be here.
00:23:27.470 --> 00:23:31.930
I always like to begin conversations like this one by getting our definitions out of the way.
00:23:32.190 --> 00:23:37.030
So I'm hoping you'll start us off by explaining what's actually happening inside
00:23:37.030 --> 00:23:40.180
the central nervous system during an MS relapse.
00:23:40.980 --> 00:23:45.070
That's a fantastic point, and I love patients to understand what's going on.
00:23:45.730 --> 00:23:50.240
So during a relapse, the immune system mistakenly attacks myelin,
00:23:50.680 --> 00:23:55.430
that protective layer around nerve fibers that helps transmit signal quickly and smoothly.
00:23:55.920 --> 00:23:58.600
And sometimes it can even disrupt the fibers themselves.
00:23:59.190 --> 00:24:01.920
This disrupts how the signals work throughout the nervous system,
00:24:01.920 --> 00:24:05.690
leading to symptoms like vision change, non-minus weakness, among a few others.
00:24:06.150 --> 00:24:10.620
And how you present is depending on where exactly in the central nervous system that occurs.
00:24:11.350 --> 00:24:15.770
And this is driven by an autoimmune issue. So these inflammatory or immune cells
00:24:15.990 --> 00:24:19.840
get mistakenly triggered to go into the blood-brain barrier and attack the myelin
00:24:19.840 --> 00:24:21.740
to an autoimmune pathology.
00:24:22.550 --> 00:24:27.600
We often hear terms like flare, attack, exacerbation, and relapse.
00:24:28.060 --> 00:24:30.600
Are these terms all describing the same thing?
00:24:31.410 --> 00:24:34.240
They are, and they're often used by patients interchangeably,
00:24:34.240 --> 00:24:38.080
although in medicine, we usually like to use the term relapse because that's
00:24:38.080 --> 00:24:39.970
what's used in our current MS guidelines.
00:24:40.620 --> 00:24:43.570
But one distinction I'd like to tease out, that between these,
00:24:43.570 --> 00:24:47.730
oftentimes I'll hear my patients also use the word flare just to describe a
00:24:47.730 --> 00:24:51.160
day when their symptoms feel worse, even if it's from fatigue or heat,
00:24:51.460 --> 00:24:54.370
rather than new symptoms suggested on a relapse.
00:24:54.570 --> 00:24:58.400
So when I hear someone say that they're flaring, it's worth asking whether they're
00:24:58.400 --> 00:25:03.130
experiencing new symptoms or just simply temporary worsening of some of their prior existing ones.
00:25:04.140 --> 00:25:07.900
Well, that leads me to this two-part question. First,
00:25:08.440 --> 00:25:13.920
define what a pseudo-relapse is, and then how can things like a mild urinary
00:25:13.920 --> 00:25:19.130
tract infection, stress, or even a very hot day trick someone into thinking
00:25:19.130 --> 00:25:21.410
their MS is actively progressing?
00:25:22.330 --> 00:25:25.420
This is a common topic that we've covered. I think it's really important for
00:25:25.420 --> 00:25:29.190
patients to know today to be able to tease out their different symptoms.
00:25:29.790 --> 00:25:34.830
So while a true relapse represents new inflammatory activity or an attack,
00:25:35.510 --> 00:25:39.570
a pseudo-relapse is temporary worsening of prior symptoms because the nervous
00:25:39.570 --> 00:25:44.590
system is under some sort of rest, not because there's new damage or inflammation of prey.
00:25:45.360 --> 00:25:48.760
I typically describe a pseudo-relapse as a scar from prior inflammation,
00:25:49.180 --> 00:25:51.040
getting irritated and talking to you.
00:25:51.520 --> 00:25:54.970
Common triggers, like you mentioned, might be like a UTI, a cold,
00:25:54.970 --> 00:25:56.470
or some other viral illness.
00:25:56.870 --> 00:26:01.190
I oftentimes will also see stress, sleep deprivation, and really things that
00:26:01.190 --> 00:26:05.100
increase your body's internal temperature by just half a degree Celsius can
00:26:05.100 --> 00:26:09.180
affect that conduction down a scarred neuron and cause these symptoms.
00:26:09.180 --> 00:26:14.210
Even things like I had showered, I had summer's day, maybe you had a really intense gym workout.
00:26:14.750 --> 00:26:20.440
All of these make axon or firing down a damaged nerve where the myelin was attacked
00:26:20.440 --> 00:26:21.740
a little bit more difficult.
00:26:22.240 --> 00:26:25.560
And so while the signal may work adequately under normal conditions,
00:26:25.560 --> 00:26:28.900
when the system gets stressed, like when the body temperature rises,
00:26:29.250 --> 00:26:33.430
that's when the signal becomes a little less efficient. And that's what we call pseudo-relapse.
00:26:33.830 --> 00:26:38.230
But teasing that out from relapse or an insidventory attack is really important
00:26:38.230 --> 00:26:41.350
to kind of know the difference because it changes how we treat the two.
00:26:42.010 --> 00:26:47.140
Can you explain why a new or worsening symptom has to last at least 24 hours
00:26:47.140 --> 00:26:49.260
before it qualifies as a relapse?
00:26:49.900 --> 00:26:53.610
Definitely. So inflammation is not quick on or off.
00:26:54.000 --> 00:26:58.030
When the attack happens from those immune cells that go and attack the myelin,
00:26:58.030 --> 00:27:02.820
causing the disease process of MS, it doesn't come up quickly and go away quickly.
00:27:03.390 --> 00:27:07.160
When it comes on, we say lasting at least 24 hours, but classic,
00:27:07.160 --> 00:27:11.870
it usually lasts several days or even several weeks, peaks around one or two
00:27:11.870 --> 00:27:14.540
weeks and then can take weeks to months to recover.
00:27:15.120 --> 00:27:20.050
And so I focus on this because you don't want to get too hung up on really transient
00:27:20.050 --> 00:27:24.350
symptoms that might come on and off throughout the day because then you can get stressed out.
00:27:24.350 --> 00:27:27.760
Are the tingles I had in my arm for a few minutes or a few hours today or when
00:27:27.760 --> 00:27:32.860
I woke up after sleeping on an arm maybe, is this something new MS related or
00:27:33.380 --> 00:27:36.070
is that something else like you pinched a nerve or something with a certain
00:27:36.070 --> 00:27:37.530
position or a certain mechanic
00:27:38.020 --> 00:27:42.410
and so train the things that come on and off quickly i put less weight into
00:27:42.410 --> 00:27:46.530
it but if it's there and it's ongoing it's lasting more than a day and it's
00:27:46.530 --> 00:27:51.240
new and it's not to leave on for i pay more attention could this be an invest attack
00:27:52.350 --> 00:27:57.790
Are there specific red flag symptoms like sudden changes in vision or severe
00:27:57.790 --> 00:28:02.670
mobility issues where a patient shouldn't wait 24 hours and should call their
00:28:02.670 --> 00:28:04.480
neurologist's office immediately?
00:28:05.150 --> 00:28:10.660
Definitely. So acute symptoms like sudden facial droop, inability to speak,
00:28:11.070 --> 00:28:15.650
numbness or weakness of a limb could be something separate from MS like a stroke.
00:28:15.650 --> 00:28:19.550
And I would call 911 immediately for that for acute evaluation.
00:28:20.420 --> 00:28:25.520
Separately from vascular issues like stroke, MS symptoms can also be really severe.
00:28:25.520 --> 00:28:30.390
And so if you're unable to walk, unable to see, suddenly unable to control your
00:28:30.390 --> 00:28:34.720
bowel or bladder, that I would say message your care team a little bit sooner
00:28:34.720 --> 00:28:38.560
just to make them aware if there's more urgent evaluation that they would recommend.
00:28:39.540 --> 00:28:43.390
If someone believes they're experiencing a relapse, what information should
00:28:43.390 --> 00:28:45.910
they gather before they call their neurologist?
00:28:46.620 --> 00:28:51.350
I would take a note of what symptoms they're having and what is new symptoms
00:28:51.350 --> 00:28:56.250
that they never had before versus old symptoms or worsening of old symptoms.
00:28:56.250 --> 00:28:57.920
So knowing your baseline is important.
00:28:58.490 --> 00:29:02.050
How long symptoms have been going on for? And then just taking note,
00:29:02.050 --> 00:29:05.320
any changes or things throwing you off in the time leading into that,
00:29:05.320 --> 00:29:10.640
whether that was a current or recent infection, keeping in mind recent vaccines, illness travel,
00:29:11.020 --> 00:29:14.340
thinking any other things that could be associated with that presentation.
00:29:15.170 --> 00:29:20.370
If someone notices an old symptom flaring up versus an entirely new symptom
00:29:20.370 --> 00:29:24.730
appearing, does one point more toward a true relapse than the other?
00:29:25.730 --> 00:29:31.580
When you've had worsening of prior symptoms or when you've had redemonstration
00:29:31.700 --> 00:29:35.290
of prior symptoms, I should say, that points more toward the pseudo-relapse.
00:29:35.780 --> 00:29:40.870
And your care team will ask some questions, try to investigate with labs,
00:29:40.870 --> 00:29:44.350
maybe a urine study to see if there's any infections or different things that
00:29:44.350 --> 00:29:48.660
could be triggering that potential pseudo-relapse and seeing if we find a cause to that trigger.
00:29:49.320 --> 00:29:52.500
But if there are symptoms that are new and haven't heard before and they're
00:29:52.500 --> 00:29:55.510
ongoing, those are going to trigger your care team to worry about,
00:29:55.510 --> 00:29:57.080
hey, as soon as you'll shoot a tuck.
00:29:57.840 --> 00:30:02.260
Let's talk about shared decision-making for a moment. How do you and a patient
00:30:02.260 --> 00:30:06.800
decide whether a relapse is mild enough to let it resolve on its own rather
00:30:06.800 --> 00:30:08.390
than intervening and treating it?
00:30:09.040 --> 00:30:14.840
So when symptoms are mild or they're not impeding everyday functioning,
00:30:15.770 --> 00:30:20.250
We may say, hey, let's just manage with close observation. We can consider if
00:30:20.250 --> 00:30:21.960
imaging is necessary or not.
00:30:22.840 --> 00:30:27.390
If symptoms are moderate to severe, impacting life, impacting vision or ability
00:30:27.390 --> 00:30:32.520
to walk, though as we say, maybe we need to do a treatment with high-dose steroids,
00:30:32.520 --> 00:30:37.300
whether that's IV steroids or oral steroids, to help suppress that inflammation.
00:30:37.860 --> 00:30:42.450
But high-dose steroids are not changing MS trajectory and they're not changing
00:30:42.450 --> 00:30:46.590
long-term outcomes, but they help sometimes speed up the rate of recovery from
00:30:46.590 --> 00:30:51.090
the symptoms. And so with more moderate to severe symptoms, we consider steroids into the mix.
00:30:51.490 --> 00:30:56.290
And even more when you have severe optic baritis or maybe a lesion in the spinal
00:30:56.290 --> 00:30:59.690
cord, and if there's not much of a response to the dose of steroids,
00:31:00.080 --> 00:31:02.640
then we'll say, hey, do we need to escalate to the next step,
00:31:02.810 --> 00:31:04.330
which might be plasma exchange.
00:31:04.900 --> 00:31:08.850
What are those steroids actually doing to the inflammation, and how quickly
00:31:08.850 --> 00:31:10.930
can someone expect to start feeling better?
00:31:11.790 --> 00:31:16.200
Steroids like i mentioned don't use a long-term outcome so where you'll settle
00:31:16.200 --> 00:31:19.820
out in terms of symptom recovery is where you'll settle out but they can help
00:31:19.820 --> 00:31:21.960
us get there a little bit faster and they work
00:31:22.400 --> 00:31:26.460
as a cooling down of inflammation is how i usually try to explain it but they
00:31:26.460 --> 00:31:30.350
don't stop those immune cells from doing what they're doing in terms of attacking
00:31:30.350 --> 00:31:34.500
the myelin which is why separately disease modified therapies are so important
00:31:35.230 --> 00:31:38.660
so steroids will help pull things off and sometimes people will endorse some
00:31:38.660 --> 00:31:41.400
symptom improvement during their course of high-dose steroids,
00:31:41.400 --> 00:31:43.790
and usually we'll do three, sometimes five days.
00:31:44.490 --> 00:31:48.410
And usually by that three to five day period, if there's no improvement,
00:31:48.410 --> 00:31:52.890
with still significant symptoms, some will say, hey, do we escalate to the plasma exchange?
00:31:53.300 --> 00:31:57.190
But usually you see some turnaround happen during that initial high-dose steroid dose.
00:31:57.510 --> 00:32:01.030
The debridement, which is super variable, some people get complete resolution,
00:32:01.030 --> 00:32:03.370
other people get a headway of 50% better.
00:32:04.400 --> 00:32:05.930
Lots of variability within that.
00:32:06.890 --> 00:32:11.660
Steroids can sometimes have tough short-term side effects like mood swings,
00:32:11.660 --> 00:32:13.880
insomnia, or intense flushing.
00:32:14.600 --> 00:32:19.020
What's the best way for someone to ride out these side effects during those few days of treatment?
00:32:19.840 --> 00:32:23.310
So there are a lot of side effects that can happen. Some of the common ones
00:32:23.310 --> 00:32:27.280
we watch out for are increased blood pressure, increased blood sugar,
00:32:27.560 --> 00:32:30.590
stress or agitation, trouble sleeping.
00:32:31.050 --> 00:32:34.610
So we try to mitigate each of these as they occur. Obviously,
00:32:34.610 --> 00:32:40.070
we'll do some melatonin prophylaxis at night, sleeping is an issue.
00:32:40.460 --> 00:32:44.670
Different coping management strategies of getting really stressed or worked out.
00:32:45.120 --> 00:32:48.140
Certainly keeping an eye on blood sugar and blood pressure on this.
00:32:48.140 --> 00:32:52.490
And we tackle each of these as they happen because not everyone experiences this.
00:32:53.020 --> 00:32:56.240
Other things with acute steroids, there can be white cane, but that's usually
00:32:56.240 --> 00:32:58.470
with more extensive dosing that we'll see.
00:32:59.020 --> 00:33:02.320
We triage each of these independently and then just make everyone aware of the
00:33:02.320 --> 00:33:06.250
symptoms to watch out for so they know to monitor. And then we do our own monitoring.
00:33:07.080 --> 00:33:12.230
There's not one specific thing that people can do when they're on steroids to
00:33:12.230 --> 00:33:15.730
know to get ahead of these things, but just to know what to look for and to
00:33:15.730 --> 00:33:18.800
talk to their provider if you're experiencing any certain thing,
00:33:18.800 --> 00:33:20.270
and then we'll tackle each of these.
00:33:20.830 --> 00:33:26.950
We also will do prophylactic GI medications to help prevent reflux or ulcers
00:33:26.950 --> 00:33:29.100
from formate. And so we'll have you take those.
00:33:29.310 --> 00:33:33.050
We'll have you take the steroid with food to also help protect the GI stomach lining.
00:33:33.350 --> 00:33:36.880
I can usually also take vitamin D and calcium while you're on the course of
00:33:36.880 --> 00:33:38.660
steroid to help protect bone strength.
00:33:39.350 --> 00:33:43.900
When someone is on a high-efficacy disease-modifying therapy and they experience
00:33:43.900 --> 00:33:48.780
a relapse, their immediate fear is often, my DMT isn't working anymore.
00:33:49.490 --> 00:33:53.520
How do you evaluate whether a relapse means it's time to switch treatments?
00:33:54.230 --> 00:33:58.830
That's a good point. And so I take it from two parts. One, I bring the patient
00:33:58.830 --> 00:34:03.400
in for a clinical exam and I compare the prior neurologic exam to what I'm seeing
00:34:03.400 --> 00:34:06.640
on their exam to see are there any objective changes we're noticing.
00:34:07.020 --> 00:34:10.820
Things like their walking speed or walking distance, their strength,
00:34:11.270 --> 00:34:14.970
other sensory deficits or balance issues I might be teasing out that I'm finding
00:34:14.970 --> 00:34:16.780
new from the last time I examined them.
00:34:17.440 --> 00:34:22.230
We also use MRI imaging to investigate is there a new lesion that we're seeing
00:34:22.230 --> 00:34:26.370
correlating with these symptoms or new enhancement correlating with these symptoms.
00:34:26.700 --> 00:34:31.300
And if we see that, then we assess, depending on where we're at in that disease-modifying
00:34:31.300 --> 00:34:34.880
therapy regimen, if there's a need to switch or to maintain.
00:34:35.530 --> 00:34:40.240
Does having a relapse mean that individual will definitely have permanent long-term
00:34:40.240 --> 00:34:43.630
disability or is full recovery possible?
00:34:44.330 --> 00:34:48.230
I think the latter is an important thing to remember. So MS,
00:34:48.380 --> 00:34:54.150
last week, it comes on with this inflammatory episode and it'll recur with time treated.
00:34:54.660 --> 00:34:58.520
But after some time, the inflammation goes off and then there's that recovery
00:34:58.520 --> 00:35:02.620
period in which your body tries to heal the myelin damage that happened.
00:35:02.980 --> 00:35:06.910
So cladicycle, we see pretty good recovery from MS relapses,
00:35:07.270 --> 00:35:10.990
but the extent to which someone might recover is very difficult to predict.
00:35:11.590 --> 00:35:15.890
I have patients that recover completely without any residual symptoms.
00:35:16.220 --> 00:35:19.470
And then I have patients that have some degree of recovery, but not complete
00:35:19.470 --> 00:35:21.110
back to where they were at for.
00:35:21.730 --> 00:35:27.010
The stage of severe disability can happen, but it's not as common within a mess
00:35:27.010 --> 00:35:30.860
as it is in some of our other autoimmune or demyelinating conditions.
00:35:31.190 --> 00:35:34.960
And so there's usually an expected good degree of recovery, but don't forget
00:35:34.960 --> 00:35:37.690
there's always variability and everyone's on a spectrum.
00:35:38.460 --> 00:35:43.510
Can things like physical therapy, rest, and lifestyle adjustments play a role
00:35:43.510 --> 00:35:46.380
in helping someone bounce back after a relapse?
00:35:46.980 --> 00:35:51.970
Absolutely. I love to engage our different specialties to help play into it.
00:35:51.970 --> 00:35:53.250
And I do see a difference.
00:35:53.610 --> 00:35:57.290
Having a good neurophysical therapist, occupational therapist,
00:35:57.520 --> 00:36:00.950
speech therapist, sometimes a vision rehabilitation program
00:36:01.280 --> 00:36:06.300
are all different components that we work with and help regain that balance
00:36:06.300 --> 00:36:12.250
issue, that motor strength issue, sometimes that proprioceptive sensory issue to help you adjust
00:36:12.640 --> 00:36:16.650
and work through some of the deficits to get back to as baseline as you can.
00:36:17.560 --> 00:36:22.850
Anxiety from worrying about the next relapse can get to the point where it paralyzes someone.
00:36:23.360 --> 00:36:26.250
What advice do you have for managing that uncertainty?
00:36:26.810 --> 00:36:32.360
So to that, I would say it's true. We can't predict when the next MS relapse
00:36:32.360 --> 00:36:37.450
will hit, but we can focus on the things we can control to keep people feeling
00:36:37.770 --> 00:36:41.060
as active and in control of their lives as possible.
00:36:41.390 --> 00:36:45.780
So the most important thing in this is getting on a good disease-modifying therapy
00:36:45.940 --> 00:36:47.860
to help prevent future relapses.
00:36:48.390 --> 00:36:52.000
And then otherwise, also focusing on good lifestyle changes,
00:36:52.000 --> 00:36:55.780
healthy behaviors that promote a healthy central nervous system.
00:36:56.060 --> 00:37:01.740
From having a good diet, exercise, these promote oxygen and nutrient-rich blood
00:37:01.740 --> 00:37:03.290
to get to your brain tissue.
00:37:03.410 --> 00:37:07.460
You also want to limit things like smoking or vaping, manage cardiovascular
00:37:07.460 --> 00:37:11.940
risk factors like blood pressure, diabetes to help make sure perfusion to the brain is good,
00:37:12.340 --> 00:37:16.870
keeping up to date with other aspects of health, all to prevent a healthy brain
00:37:17.020 --> 00:37:19.510
and then help manage overall brain health and
00:37:20.290 --> 00:37:21.950
the overall MS wellness picture.
00:37:22.410 --> 00:37:26.070
So it's sort of two-part, making sure we're on therapy, making sure we're in
00:37:26.070 --> 00:37:29.650
close contact with your provider, getting our annual surveillance scan,
00:37:30.050 --> 00:37:34.040
and then also living a healthy life together. These really help manage the disease.
00:37:34.870 --> 00:37:39.120
Dr. Gabriela Karolidis, thank you for all you do to improve the lives of people
00:37:39.120 --> 00:37:42.170
living with MS. And thanks for talking with me today.
00:37:42.820 --> 00:37:44.830
Absolutely. It was my pleasure. Thank you for having me.
00:37:45.710 --> 00:37:50.390
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
00:37:50.390 --> 00:37:52.110
by the National MS Society,
00:37:52.430 --> 00:37:56.610
and you can share this episode of the podcast by letting your friends or family
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members know that all they have to do is point their web browser at realtalkms.com slash,
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00:38:04.890 --> 00:38:09.100
You'll find that link in today's show notes, so you can easily copy and paste
00:38:09.100 --> 00:38:11.590
it right into an email or a text.
00:38:12.450 --> 00:38:16.200
This year's joint meeting of the European Committee for Treatment and Research
00:38:16.200 --> 00:38:21.040
in MS and the America's Committee for Treatment and Research MS is going to
00:38:21.040 --> 00:38:24.060
be the largest MS research conference in the world.
00:38:24.650 --> 00:38:28.830
And over the past few weeks, I hope I've given you some good reasons to register
00:38:28.830 --> 00:38:34.350
and participate either in person or online in the ECTRIMS Patient Community
00:38:34.350 --> 00:38:39.550
Day on Friday, October 23rd from 3 to 6 p.m. Eastern Time.
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Next week, one of the global experts who's going to be part of Patient Community Day, Dr.
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Jennifer Graves, and the host of the ECTRIMS podcast, my friend Brett Drummond,
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will be joining me to give you a special preview of what you can expect to see
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and hear during ECTRIMS Patient Community Day.
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I hope you'll join me next week to get this sneak peek of ECTRIMS Patient Community Day 2026.
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I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.
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