Caring For Someone Through Disease Progression and Smoldering MS

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care partner and person with MS reviewing care plan with healthcare professional

14 Dec 2023 | ~4:41 Engagement Time


Roz Kalb , Psychologist

The Smoldering MS Experience

Care partners for people living with multiple sclerosis find many aspects of the disease confusing, including its unpredictability and its many invisible symptoms. It’s difficult enough for those who have the disease to figure out what’s going on; for care partners, it can feel even more mysterious. This article addresses a very common question asked about MS progression – “if the disease is stable, with no new relapses (also called ‘attacks’ or ‘exacerbations’, why are symptoms worsening and disability increasing?” The experience may look something like this:

Sondra is a 42-year-old teacher who has had MS for 19 years. She started a disease-modifying therapy (DMT) right after her diagnosis to reduce the number and severity of her relapses and slow the progression of her disease. Sondra has done well over time. Following two early relapses, she has had no further attacks, and there have been no new or active lesions on her MRI for many years. However, both Sondra and her care partner, Lawrence, have noticed that her symptoms seem to be worsening, and she now needs to use a cane outside the house to maintain her balance and stability. They are understandably confused and ask the neurologist what’s happening.

Understanding Smoldering MS

The neurologist explains that our understanding of the MS disease process has evolved over the past few years. Until recently, MS was thought of as a two-stage disease:

  • First stage  –  A relapsing-remitting stage characterized by episodes of inflammation in the brain and/or spinal cord that cause relapses, new lesions on MRI, and new or worsening symptoms.
  • Second stage – secondary progressive MS – that is characterized less by inflammation and more by a slow worsening of function caused by the loss of myelin around nerve fibers in the central nervous system (CNS) and damage to the nerve cells themselves (neurodegeneration).

A puzzling phenomenon has become apparent in recent research. With or without treatment with a disease-modifying therapy, people with MS seem to experience progressive disability regardless of the number of relapses or lesions on MRI they experienced early in their disease course. Furthermore, the progression seems to occur as people get older, with the amount of progression varying widely from one person to another.

Gavin Giovannoni, a prominent MS neurologist and researcher, and his colleagues have begun looking at the MS disease process differently. Previously, MS was considered an “outside-in” disease process, in which inflammatory cells originating in the immune system crossed into the central nervous system via blood vessels (known as the blood-brain barrier), causing inflammatory damage in the brain and spinal cord. These researchers are now proposing an “inside-out” disease process in which the pathology begins smoldering in the central nervous system long before any symptoms occur. The smoldering process causes damage and loss in response to which the body produces an inflammatory response. In other words, damage is first, followed by inflammation. This model would explain why some people continue to feel worse or become more disabled even though the inflammation is being treated with a DMT.

Treating MS Disease Progression

Sondra and Lawrence wonder whether taking a DMT made any difference for her and whether she should continue. Her neurologist explains that reducing inflammation continues to be an essential component of MS treatment and an important investment in Sondra’s future. We now know, however, that reducing inflammation isn’t enough. He will be working with Sondra and Lawrence to identify DMTs with more than one mode of action or consider combining her DMT with other treatments that offer neuroprotection, remyelination of nerve fibers, or even repair of nerve fibers.

New medications in the research pipeline may offer these additional benefits. For example, a new class of MS DMT is under study called Bruton’s Tyrosine Kinase inhibitors (BTKi’s) – which have recently been shown to work inside the CNS and promote repair of demyelinated nerve fibers. However, in the meantime, it is crucial to recognize the importance of lifestyle factors that can impact brain health, including disrupted sleep, poor nutrition, lack of exercise and physical activity, smoking, and other health conditions like high blood pressure and high cholesterol. These lifestyle factors can interact with the smoldering disease process and hasten disease progression.

The Three Pronged Approach to Smoldering MS Treatment

smoldering ms three pronged approach to treatment

Supporting the Effort to Manage Smoldering MS

Care partners and support systems can be pivotal in supporting someone’s effort to manage smoldering MS and slow disease progression. Consider the following tips:

  • Find physical activities you can enjoy together while supporting their efforts to add more physical activity into their day.
  • Support a regular sleep schedule and encourage consultation with a healthcare team about any symptoms (e.g., bladder problems, anxiety, depression, pain) that may disrupt sleep.
  • Go with your partner to a registered dietician for information about healthy meals that are easy to prepare – and then share the cooking!
  • Ask about symptoms that you may have difficulty seeing and understanding and encourage your partner to let you know when and how you can help.
  • Put on your own oxygen mask first! In order to be an effective care partner, you need to attend to your own health and wellness.

The Importance of Support in Achieving Wellness Goals

smoldering ms the importance of setting and supporting wellness goals