Reducing the Impact of MS Relapses
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By
Sharon Stoll, DO, as told to Keri Wiginton
You can think about multiple sclerosis (MS) kind of like the coronavirus: Itâs completely unpredictable. None of us — not the doctor or the person with the disease — has a crystal ball. We have no idea how MS will affect you 20 years down the road.
Thatâs why, if you have a relapsing form of MS, the most important thing is early treatment with an effective disease-modifying therapy (DMT).
You should start or stay on a DMT even if you think youâre doing fine. Some people want to go the natural route if they only have a relapse here or there. But no amount of exercise, vitamin D, or sun exposure is going to curtail your disease path. The only thing thatâs proven to do that is disease-modifying therapy.
We also know that the brain of someone with MS shrinks at a faster rate than it would for somebody matched in age, gender, and lifestyle. DMTs are critical in slowing that process, especially when the disease is in its early stages.
Finding the Right Treatment
There are lots of DMTs out there. Some work better than others. But I explain the pros and cons of each medication with anyone starting a new treatment.
Many oral drugs are about 50% effective. That doesnât mean that half of all people who use them will relapse. It means that if you were normally to have a relapse every 5 years, you would instead have a relapse every 10 years.
People relapse less often now because weâre able to catch and treat MS earlier. But having said that, I see plenty of people who come in with 10 enhancing lesions in their brain. Iâm not going to put them on a medication thatâs only 50% effective. Iâm going to put them on something thatâs 95% effective.
You may wonder why everyone isnât on the most effective choice. Well, one can make a case that the better a drug works, the more side effects it may have. But thatâs not exactly true.
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For example, natalizumab, a drug that suppresses your immune system, is one of the most effective medications we have for relapsing forms of MS. You get it through a vein in your arm every 4 weeks. Iâve never seen someone have a relapse on it. And it doesnât have daily side effects.
But it does come with a serious warning.
If you take natalizumab and you have antibodies against the antibody for the JC virus, it raises the chances youâll get a rare brain infection that might kill you. Itâs called progressive multifocal leukoencephalopathy (PML).
That sounds scary, right? But itâs standard for doctors to check for these antibodies every 6 months. And if youâre negative, itâs safe to continue the medication.
Thatâs why I think itâs important to see a specialist, even if itâs just once a year or at the onset of your diagnosis. Theyâll let you know how to safely take the best drug for your MS. And you can decide whatâs right for you.
When to Switch Drugs
If you have a relapse, youâll want to talk to your doctor about finding a new medicine. But itâs important to know the difference between a true relapse and a flare of an old lesion.
A relapse usually shows up as symptoms youâve never had before. Thatâs things like new vision loss, balance problems, and numbness or tingling on one side of your body. These symptoms will linger longer than a day.
A flare is when old symptoms get worse. Thatâs more likely to happen in certain situations, like when youâre stressed out or hot.
But it can be hard to tell the difference. Itâs a good idea to call your doctor if you arenât sure and your symptoms last more than 24 hours.
What to Know About Steroids
I get lots of calls during the holidays. Thatâs when people have flares and they think they need steroids. I donât treat a worsening of old symptoms with steroids because I know their symptoms are caused by stress.
If you have a relapse, you may get 3-5 days of steroids through a vein in your arm. But you donât always need treatment. Steroids donât change the course of your disease or prevent flares in the future. They only make your symptoms go away faster. That means instead of waiting a year to get 90% better on your own, steroids will help you hit that mark in 6 weeks.
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How to Manage Flares
Meditation, yoga, or acupuncture are my top choices.
For yoga, I suggest the same program I do with my kids. Itâs called âBetsy the Banana: A Cosmic Kids Yoga Adventure!â You can find it for free on the internet. It provides the perfect amount of stretching for people with MS. And you donât have to twist into weird positions.
Virtual Visits
Telehealth is a good way to meet a doctor before you come in for their first exam, especially if you have to drive a long way to see them. They can tell you what lab or imaging tests you need. And then you can talk about the results when you come into the office.
Another cool thing about technology is that certain apps can detect subtle changes in someoneâs motor functions. I use one I helped create. Itâs called BeCare Link. It can do a neurological exam using a smartphone — all from the comfort of someoneâs home.
For example, if someone tells me theyâre falling more or their walking is off, the first thing Iâll check is how fast they can do a 25-foot walk. The app can use built-in phone sensors to gather that data. And smartphones can give more nuanced data points than I can do in the office. The phone can count someoneâs steps or gauge whether they veer to the right or left.
And then I can make an assessment via telehealth when I get their score and their metrics.
But telehealth canât evaluate a new symptom. You might have brand new left leg numbness. That could be a relapse. But people with MS arenât spared from the other ailments we all get. You could have a herniated disk, a pinched nerve, or sciatica. Thatâs when you to come into your doctorâs office.
Be Specific About Your Symptoms
For MS, there are three things we image: the brain, the cervical spine, and the thoracic spine. An MRI will show right away if youâve had a relapse in these areas. But before your scan, youâll need to tell your doctor where your new symptoms are. That can change the area they scan.
Take the optic nerve, for example. Thatâs one slice, or picture, of the brain. If you miss it, the MRI is worthless. If you have brand new double vision, tell your doctor that, even if youâre already scheduled for a routine MRI. That way they can write specific directions to image that area.
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When to See Your Doctor
I want to see you every 3 months if your condition isnât stable.
But if youâre under 65 and your condition is stable, you should see your doctor every 6 months. If youâre over 65, your condition is stable, and you havenât changed drugs in 5 years, then once a year is generally OK. Thatâs because MS tends to be less active as you get older.
I image my patientsâ brains every year, even if they donât have new symptoms. Thatâs so I can find their asymptomatic lesions. One new lesion isnât the end of the world. But for every lesion that gives you symptoms, you could have 9 that donât.
When I catch new âsilentâ lesions, I may need to change you to a more effective medicine. I want to get ahead of the disease instead of playing catch-up.
My motto is the same as Benjamin Franklinâs: An ounce of prevention is worth a pound of cure.
Sharon Stoll, DO, is a neurologist at Yale Medicine. Stoll specializes in multiple sclerosis and neuroimmunology — neuroscience and the immune system. Her current research focuses on relapsing-remitting and progressive forms of MS.
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