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MS Flare-Ups and Managing Relapses
00:00:00:00 - 00:00:29:12
Dr. Jacqueline Nicholas
The goal of being on an MS disease-modifying therapy is to prevent new damage over time. And that would be not only preventing new relapses or flares, which are one in the same, but it would also mean preventing new lesions on MRI. And so I would first look at the question of, how long has the individual been on that treatment?
00:00:29:14 - 00:00:49:15
Dr. Jacqueline Nicholas
If somebody just started their treatment and maybe a month ago, and they had a relapse, it's possible that that treatment just hasn't had enough time to get into the system and have its full effect. I generally think that with each disease-modifying therapy that we start, for the most part, they take about six months to get their full benefit.
00:00:49:17 - 00:01:11:14
Dr. Jacqueline Nicholas
So, we usually start pretty seriously judging their effect at that point in time. If it is a pretty notable relapse, I would say, beyond that time, I would say that most MS physicians, including myself, would say it's time to use a different therapy because this one isn’t the right one for you.
00:01:11:16 - 00:01:35:22
Dr. Jacqueline Nicholas
And typically we would pick something that we believe in our experience and based on clinical trials is more effective than the one that the individual had a breakthrough on. And then the other thing is too, somebody may have been on a medicine for five years, and they have one relapse, and maybe they’re saying, I have the tiniest bit of numbness on my arm, and it doesn’t really bother me.
00:01:35:24 - 00:02:03:19
Dr. Jacqueline Nicholas
That doesn’t mean the medicine’s not working. It means, yes, you had a small sensory relapse, but if in five years somebody felt great, and they didn’t have anything new, I usually say that’s our first strike against that treatment. We have the option of doing something else now, if they would like, but if they feel comfortable and they really like their treatment, and we haven’t seen anything else new on MRI or history-wise, I would say if we have something else, we’re going to switch.
00:02:03:21 - 00:02:32:24
Dr. Jacqueline Nicholas
So just different ways of looking at it. So the treatment for an MS flare or an MS relapse is pretty much the same as what we talked about for optic neuritis, so I would say the most classic treatment would be IV steroids. The other thing, too, is that if somebody has a relapse and maybe they really have had a bad experience with steroids in the past, and that relapse in their opinion and the clinician’s opinion is mild,
00:02:33:01 - 00:02:52:04
Dr. Jacqueline Nicholas
let’s say again that it’s just a little area of numbness and they’re just not really bothered by it, we have the option of not treating because steroids don’t change the long-term outcome, meaning if somebody is going to improve from that relapse, they're going to improve to the same degree a year later whether we gave the steroids or not.
00:02:52:06 - 00:03:12:16
Dr. Jacqueline Nicholas
And so the steroid treatment just accelerates recovery. Now, if somebody comes into my office and they can’t walk because of their relapse, I’m going to say we have to treat you, but we can also do a watch-and-wait approach if it’s more mild because many people don’t like the way they feel on some of these relapse treatments.
00:03:12:18 - 00:03:37:16
Dr. Jacqueline Nicholas
Yeah, so it’s challenging because outside of taking a medicine to fight your MS, we don't have clear evidence that there are other things that you can do in your lifestyle that will prevent a relapse, per se. But we know that there are things that can make your MS more aggressive.
00:03:37:18 - 00:03:56:18
Dr. Jacqueline Nicholas
So one would be cigarette smoke, so tobacco use, so that’s something that we talk about every time I see somebody that, are you smoking, is anybody smoking around you? Because, believe it or not, that accelerates MS, and that could make it more likely that somebody would have new damage. So that’s a big one.
00:03:56:20 - 00:04:34:22
Dr. Jacqueline Nicholas
Then I would say that a common thing, lifestyle modifications are, I think most important for making somebody feel their best with MS. So they may not prevent or relapse, but they can prevent what we call pseudo-relapses. So everybody with MS has heard, watch out for the hot weather. So if somebody is outside in the hot sun, and they're feeling like they're getting really fatigued, one thing I would say to them is, if you feel bad, go inside, get cooled off in the air conditioning, and then come out, take it in short little bits, or wear
00:04:34:22 - 00:04:58:24
Dr. Jacqueline Nicholas
a cooling vest, or drink ice-cold water while you're out here, because getting overheated can make all those chronic symptoms seem worse, even though it’s not really an attack, but it might make that person feel poorly for that moment. The other things that we recommend from a lifestyle standpoint would be regular exercise. I know that's hard, especially when fatigue is one of the most common symptoms with MS,
00:04:59:01 - 00:05:21:01
Dr. Jacqueline Nicholas
but even if it’s short amounts of exercise, that helps to keep somebody strong and walking their best so that if they get a relapse, they'll bounce back faster, and that they'll stay strong throughout their lifetime. The other thing is making sure that they're eating right. So there's a lot of research right now into diet and MS,
00:05:21:01 - 00:05:48:10
Dr. Jacqueline Nicholas
and I think that we will know a lot more than we do at present in hopefully in the coming years, but we don't have one clear diet that we would say prevents new damage in MS. But we know from our patients that they do different diets that are healthy diets where maybe they exclude gluten, or they do a Mediterranean diet, or a paleo diet, and they feel better, and their symptoms are better.
00:05:48:10 - 00:06:11:23
Dr. Jacqueline Nicholas
And so I think a lot of that is very important because how somebody feels every day with MS, that’s really our goal to make them feel their best. So even though it may not prevent relapses, it may reduce their symptoms significantly, and so those are really important as well.
Multiple sclerosis (MS) affects the central nervous system, which includes the brain, optic nerve, and spinal cord. MS causes damage that leads to symptoms such as dizziness, vision changes, trouble walking, and bowel or bladder issues. Symptoms often come and go, getting worse over time.
In some cases, these ups and downs can signal an MS relapse. MyMSTeam sat down with Dr. Jacqueline Nicholas to find out more.
Dr. Nicholas is a board-certified neurologist specializing in neuroimmunology, MS, and spasticity. She serves as the system chief of neuroimmunology and multiple sclerosis, director of MS research, and neuroimmunology fellowship director at the OhioHealth Multiple Sclerosis Clinic in Columbus, Ohio.
Relapses are also called attacks, exacerbations, or flares. Most people living with MS will experience a relapse at some point. However, a relapse isn’t the same as MS progression. “When we use the term ‘progression,’ we usually think of something that is slowly worsening over a long period of time, separate from relapses,” Dr. Nicholas explained.
During a relapse, new or worsening MS symptoms last more than 24 hours. Relapses aren’t caused by fever, infection, or overheating.
Relapse symptoms differ from person to person. Even in the same person, they’re unpredictable — one episode may not be the same as the next. One MyMSTeam member said, “I will not be able to sleep for a few nights. I get very cold when normally I am always hot. My stiffness in my legs and back starts getting bad. It will feel like I am getting the flu. Then it gets worse, and I have trouble with balance and sometimes can’t walk.”
In a true MS exacerbation:
Relapses are caused by inflammation that damages the nerve cells’ myelin sheath (protective coating). Although MS symptoms during a relapse may peak within a few days, recovery can take weeks to months. Some people fully recover, while others may have lingering symptoms.
Most people feel better within two to three months of the start of a relapse. For some, full recovery can take up to a year.
Common symptoms of an MS flare include:
Vision issues, particularly a condition called optic neuritis, may also point to an MS flare. “Optic neuritis is a common relapse symptom in the setting of MS,” Dr. Nicholas said.
A pseudo-relapse, or pseudo-exacerbation, occurs when your current symptoms act up. This may seem like a relapse, but it isn’t. A pseudo-relapse doesn’t result from an uptick in disease activity, and it doesn’t involve inflammation or new brain or spinal cord damage.
An outside factor, like stress or hot weather, usually causes a pseudo-exacerbation. A pseudo-flare can also be caused by an infection, such as a urinary tract infection (UTI), a cold, or the flu. Since UTIs are the most common cause, healthcare providers routinely screen for these infections during appointments.
One way to tell a relapse from a pseudo-relapse is to see if the person has a fever. Even a mild infection or the smallest body temperature increase can trigger MS symptoms.
“When I am tired, hot, or stressed, I will have a pseudo-flare,” a MyMSTeam member said. “Once I am cool, calm, and collected, my symptoms go away.” Most pseudo-flares resolve within 24 hours after the underlying cause is resolved.
Exacerbations are caused by inflammation in the central nervous system. Inflammation damages the myelin in a process called demyelination. Demyelination and inflammation interrupt the flow of signals traveling along neurons. Symptoms of MS vary depending on where the damage occurs.
It’s possible to experience one or many symptoms together during a relapse. When inflammation affects a single area of the central nervous system, relapses may cause a single neurologic symptom, like numbness in one leg. Having multiple symptoms, such as muscle weakness plus vision changes, may mean that more than one area of the nervous system is involved.
No evidence of disease activity (NEDA) is one potential goal of MS treatment. Breakthrough flares — flares that occur during treatment with a disease-modifying therapy (DMT) — may mean that the disease is becoming more active. Your healthcare provider may consider adjusting your MS treatment plan if they think a breakthrough flare indicates that your MS is advancing.
DMTs for treating MS need time to take effect. “If somebody just started treatment maybe a month ago and they had a relapse, it’s possible that that treatment just hasn’t had enough time to get into the system and have its full effect,” Dr. Nicholas said. “With each disease-modifying therapy, for the most part, they take about six months to give their full benefit.”
Luckily, there are plenty of treatment options. “Typically, we would pick something that we believe, in our experience and based on clinical trials, is more effective than the one that the individual had a breakthrough on,” Dr. Nicholas said.
About 85 percent of people with MS have relapsing-remitting multiple sclerosis (RRMS). RRMS includes relapses throughout the span of the disease. In this case, the term “remission” doesn’t mean the disease is gone forever. It means you aren’t having active relapse symptoms. Silent damage can still be happening within your body.
Bouts of relapse and remission can last days, weeks, or months. One study found that people with RRMS had a relapse once every two years, on average. Flares tend to happen more often during the years right after diagnosis, but may strike at any time.
“One way to significantly reduce the chance of having an MS relapse is to take a disease-modifying therapy for multiple sclerosis,” Dr. Nicholas said. “There are many options that are proven to reduce the risk of relapse.”
People with secondary progressive multiple sclerosis can experience relapses, but they occur much less frequently. Another form, primary progressive multiple sclerosis, may cause symptom fluctuations, but these aren’t considered relapses.
“There are rare individuals who’ve been believed to have primary progressive MS who then can have a subsequent relapse. We call that progressive-relapsing MS,” Dr. Nicholas said.
Relapses that don’t severely impact a person’s ability to comfortably perform daily activities may self-correct without medical intervention. Mild sensory changes or periods of tiredness may resolve on their own.
“I determine whether to give steroids for a relapse based on how severe the relapses are and after a careful discussion with my patient,” Dr. Nicholas said. “If I see an individual who is having a small area of new numbness consistent with a new relapse, but it is not bothersome, we do not have to treat that individual with steroids. However, if somebody comes into my office and they can’t walk because of their relapse, I would strongly recommend steroid treatment and potentially plasmapheresis, if there is no or minimal benefit with steroids. This type of relapse is severe, and the goal would be to speed up recovery quickly.”
A short course of corticosteroids can speed up recovery from a relapse. “The most classic treatment would be [intravenous] steroids like methylprednisolone for three to five days,” Dr. Nicholas said.
If a person doesn’t tolerate steroids well or doesn’t like the side effects, another injectable option is Acthar Gel — purified adrenocorticotropic hormone. Acthar Gel provides long-lasting therapeutic benefits after it’s administered.
“Steroids have always helped me in the past whenever I had a flare-up,” a MyMSTeam member shared. “When I knew I was going to be on steroids, I would change my diet for three months following treatment, so as not to put on the extra weight.”
Severe flare-ups can lead to hospitalization and rehabilitation after discharge. Multiple healthcare professionals may be involved in recovery, including physical therapists, occupational therapists, and speech therapists.
Taking care of your mental health is also important when recovering from a flare. “Make sure that mental health and emotional health are addressed,” Dr. Nicholas emphasized. “If somebody feels overly stressed, that can be really bad for the immune system and can be very harmful. In addition, stress can lead to an increase in chronic symptoms.”
Be sure to tell your healthcare provider about any symptom changes. Relapses are a sign that your MS could be becoming more active. Only a qualified medical professional can tell for sure.
On MyMSTeam, people share their experiences with multiple sclerosis, get advice, and find support from others who understand.
How do you manage multiple sclerosis relapses? Have you ever had a pseudo-relapse? Let others know in the comments below.
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Hi Joe, living in a nursing home and been in quarantine for a long time now. Hope to meet some M.S. friends on here! Stay in touch!
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