Should You Be on an Advanced MS Treatment? 5 Symptoms To Look For | MyMSTeam

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Should You Be on an Advanced MS Treatment? 5 Symptoms To Look For

Medically reviewed by Federica Polidoro, M.D.
Written by Emily Wagner, M.S.
Posted on August 2, 2023

If you’re having flares more often, or if they leave you feeling significantly worse than before, you may need more aggressive treatment for your multiple sclerosis (MS). Fortunately, several MS medications have earned the name “highly effective disease-modifying therapies” (HE DMTs) because they work so well to slow disease progression and reduce the accumulation of disability. Experts have determined that people with highly active MS should start HE DMTs earlier to get the most benefit.

So, how do you know when it’s time to switch to an advanced treatment for MS? We’ll cover the signs it may be time to consider starting an HE DMT. We’ll also go over what tests your doctor might run to confirm that your MS is highly active. Knowing these signs can help you get the treatment you need sooner rather than later.

Signs Your MS May Be Highly Active

There currently isn’t a single definition of highly active MS. Instead, your neurologist will use your test results and symptoms to assess how active your disease is. If you’ve noticed any of the following signs, it’s time to make an appointment.

1. You’re Having a Hard Time Recovering From a Flare

After you’ve had a flare (a relapse or an exacerbation) of your MS symptoms, you likely won’t feel 100 percent. Your body is trying to recover from the spike of inflammation, which can affect both your physical and mental health. If you’re struggling to feel better after a flare, it might be a key sign that you have highly active MS.

You may notice you’re still experiencing fatigue, muscle weakness, numbness, or tingling that lingers longer than normal. Your cognitive function, or ability to think and process information, can also be affected. If you’re not bouncing back as quickly as you used to from a flare, let your neurologist know.

2. There’s Less Time Between Your Flares

If your MS is well controlled with medication, you likely won’t have too many flares. Another sign of highly active MS is having two or more flares within the last year, especially while you’re taking a DMT consistently as directed.

According to the National Multiple Sclerosis Society, an MS flare refers to the development of new symptoms or worsening of your old symptoms. Take note of when your flares begin and end and what symptoms you experienced. A true flare lasts for at least 24 hours and occurs at least 30 days after the last flare.

If you’re unsure about whether you’re currently experiencing a flare or if you’ve recovered, talk to your neurologist. They can look at your rate of flares to help diagnose highly active MS.

3. You Have Trouble Balancing and Walking

Ataxia is an MS symptom in which nerve damage affects your muscle coordination. Ataxia symptoms show up differently depending on what area of your brain has been affected. For example, your cerebellum is responsible for coordinating movements. If you feel more off-balance or clumsy, or if your gait (how you walk) has changed — especially after a flare — you may have highly active MS.

4. You’re Having More Muscle Spasms and Tremors

Some people also have tremors or uncontrollable shakes affecting their arms, legs, and vocal cords. You may find your arms and legs are shaking more than normal. This can happen while you’re reaching for something or you’re lying down in bed.

Vocal cord spasms can interfere with your speech as well. You may speak more quietly, slur your words, or take long pauses while you’re talking. Take note if these symptoms have gotten worse after a recent flare.

5. You’re Struggling To Control Your Bowels

Your bowels and anus are controlled by a series of muscle movements. A sign of highly active MS is loss of control over the sphincter muscle that opens and closes the anus. This can lead to bowel leakage or incontinence. If you find you’re having trouble controlling your bowel movements or you can’t sense when they’re coming, let your neurologist know.

How Does Your Doctor Determine if MS Is Highly Active?

Your doctor or neurologist can run a few tests to help determine if you have highly active MS.

Checking for New Lesions

MS is an autoimmune disease caused by your immune system attacking your central nervous system (the CNS, made up of the brain and spinal cord). Specifically, it attacks myelin, or the fatty coating that cushions your neurons (nerve cells). This creates lesions on your brain and spinal cord, which interfere with how your neurons function.

Your neurologist may use imaging tests like magnetic resonance imaging (MRI) to look for any new lesions that are 3 millimeters or more in size. Another sign of highly active MS is developing three or more new lesions visible on two MRI scans taken six to 12 months apart.

Assessing Disability

The Expanded Disability Status Scale (EDSS) measures how your disability with MS changes over time. The scale ranges from zero to 10 — with zero being no disability and 10 being death due to MS.

The Consortium of Multiple Sclerosis Centers (CMSC) states that you’re more likely to have highly active MS if:

  • You reach an EDSS score of 4 within five years of your MS symptoms beginning.
  • Your EDSS score changes by two or more points within one year.
  • Your EDSS score changes and results in new disability.

Other Risk Factors for Highly Active MS

Some people are more likely to develop highly active MS compared to others. Unfortunately, many of these risk factors are out of their control. Examples include being a male, being African American, and being diagnosed at the age of 40 or after.

According to the CMSC, between 10 percent and 15 percent of people with relapsing MS develop highly active MS. Relapsing forms of MS include relapsing-remitting MS (RRMS), clinically isolated syndrome (CIS), and active secondary progressive MS (SPMS).

HE DMTs for Highly Active MS

Since MS is caused by an overactive immune system, many treatments focus on blocking the immune system’s effects. HE DMTs prevent your immune cells from attacking your neurons in a few different ways. Some treatments target immune cells known as lymphocytes — they’re responsible for creating inflammation. Others block lymphocytes known as B cells from making antibodies (immune proteins) targeted toward myelin.

Examples of HE DMTs your doctor may prescribe if you have highly active MS include:

Some HE DMTs are injected subcutaneously (under the skin), while others are infused intravenously (by IV) at an MS infusion clinic. Some infusions are given as infrequently as twice a year.

Many people with MS are eligible for help with copays for HE DMTs and even infusion costs.

Talk With Others Who Understand

MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 200,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Have you and your doctor discussed whether your MS is highly active? Are you currently taking a highly effective disease-modifying therapy to treat it? Share your experience in the comments below, or start a conversation by posting on your Activities page.

    Posted on August 2, 2023
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    Federica Polidoro, M.D. a graduate of medical school and neurology residency in Italy, furthered her expertise through a research fellowship in multiple sclerosis at Imperial College London. Learn more about her here.
    Emily Wagner, M.S. holds a Master of Science in biomedical sciences with a focus in pharmacology. She is passionate about immunology, cancer biology, and molecular biology. Learn more about her here.

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