Can Myositis Go Into Remission?

Living with weakness, fatigue and other symptoms of myositis (idiopathic inflammatory myopathy) can feel like an ongoing battle.

But there’s light at the end of that tunnel.

“Remission is certainly achievable,” says rheumatologist Ambreesh Chawla, MD. “We’re often able to get people back to feeling as good as they were before diagnosis.”

Dr. Chawla answers some common questions he hears about myositis remission.

What does remission mean in myositis?

When you’re in remission, it means myositis has become quiet or inactive. Or as Dr. Chawla puts it, remission is when treatments have worked to the point of “putting the disease to sleep.”

In remission, you’ll likely feel much more like yourself again. Your blood tests will show normal inflammation levels, and you may notice:

• Less muscle pain and fatigue
• Better mobility
• More muscle strength
• Fewer skin symptoms

For some people, remission means feeling well while taking medication. Others may eventually reach “drug-free remission,” meaning they no longer need medicine to keep symptoms away.

What affects the likelihood of remission?

It can be easier for some people to get back to their old selves than others. Sometimes, myositis responds well to treatments; other times, it can be more stubborn.

Your team doesn’t have a crystal ball. But they can look at certain factors to consider the likelihood of remission. Here’s what they’ll be looking for:

• Myositis type: Certain forms of myositis are generally easier to put into remission. Others, like inclusion body myositis, often don’t respond as well.
• Widespread effects: Myositis can be associated with health concerns that can complicate treatment. Things like severe skin disease, interstitial lung disease (ILD), swallowing difficulties, heart concerns and cancer can make myositis tougher to manage.
• Antibody patterns: Your providers can use blood tests to help predict how aggressive your disease may be. Dr. Chawla says one marker, called MI-2, is linked to better outcomes.

But keep in mind that these are general patterns — not guarantees.

“There are some people who respond exactly like the textbooks say they should,” he shares. “And then, there are times when myositis ‘breaks the rules.’”

How do doctors help people reach remission?

Managing myositis can look different depending on its effects on your body. But the overall goal is always the same: Calm your immune system, reduce inflammation, and preserve your muscle strength and function. In short, your team will work to get you back to feeling your best.

Your treatment plan may include:

• Steroids to quickly lower inflammation
• Steroid-sparing medications to help manage the disease without relying on steroids for the long term
• Physical therapy to rebuild and maintain your muscle strength
• Monitoring for complications, like lung disease or swallowing difficulties
• Ongoing follow-up care with specialists, such as rheumatologists, neurologists, pulmonologists or dermatologists, depending on your needs

How long can remission last?

Remission isn’t the same thing as a cure. Even after you’re back to feeling like yourself, myositis can flare up again.

Myositis remission can last for years for some people. Others may experience periods where symptoms suddenly worsen.

Researchers are still trying to better understand why some people stay in remission while others relapse. But certain triggers may increase the risk of your symptoms returning. That can include:

• Viral infections and other illnesses
• Smoking
• Poor air quality
• UV exposure (if you have dermatomyositis)
• Certain immune-boosting supplements, like spirulina, elderberry and red yeast rice

Sometimes, flares happen without a clear reason. So, it’s important to keep up with seeing your providers.

“Even when you feel better, it’s good to see a rheumatologist often, just to make sure the disease has stayed in remission,” Dr. Chawla advises.

And stay alert for signs that myositis may be coming active again. Dr. Chawla recommends getting in touch with your team if you have:

• New muscle weakness
• Trouble swallowing
• Worsening muscle pain or fatigue
• Difficulty standing from a chair
• Trouble lifting your arms overhead
• Rashes that worsen after sun exposure

Catching symptoms early may help prevent more severe flares.

Living with hope after a myositis diagnosis

Living with myositis often means learning how to manage uncertainty. But remission is possible — and many people are able to return to activities they enjoy.

“We try to partner with our patients and let them know we’re in it with them,” Dr. Chawla says. “Through the good days, the tough days and everything in between.”

While researchers continue searching for better treatments — and, eventually, a cure — your team can help you move forward with strength and hope.