What To Expect After a Myositis Diagnosis

Getting diagnosed with myositis (idiopathic inflammatory myopathy) can bring a mix of emotions.

It can be a long journey to actually arrive at a diagnosis. So, when you do, it can come as a relief to finally have some clarity. But you may also feel uncertain about what comes next.

We talked with rheumatologist Ambreesh Chawla, MD, about what happens after you’re diagnosed with myositis.

What happens after a myositis diagnosis?

Myositis is an autoimmune condition that can seriously affect your quality of life. And after you’re diagnosed, your care team will work with you to create a treatment and monitoring plan to help you get back to the things you love.

“Remission is certainly achievable in myositis,” Dr. Chawla says. “That’s our goal: To get you back to living a healthy life.”

Here’s what you can expect after diagnosis.

Additional testing and screenings

Myositis can raise your risk for other conditions, so your care team may recommend additional testing to better understand the extent of its impact.

“Part of the workup is making sure there isn’t something else happening at the same time,” Dr. Chawla says.

Depending on your symptoms, myositis type and other factors, your team may recommend:

• Lung function tests
• CT scans or other imaging
• Swallowing evaluations
• Skin evaluations
• Cancer screenings or biopsies

Inflammatory myositis, in particular, can mean an increased risk for cancer. So, your provider will recommend staying up to date with cancer screenings, like mammograms, Pap smears and colonoscopies.

Medications

Corticosteroids are typically the first-line treatment for managing myositis. They help calm inflammation fast. But they can also cause side effects, and they shouldn't be used for long stretches.

“Oftentimes, high doses of steroids are given in the beginning,” Dr. Chawla says. “But we know steroids can cause toxicity in the long term.”

That’s why your provider may also recommend a “steroid-sparing” medication, like methotrexate, azathioprine or mycophenolate. These medications can help manage myositis as you gradually dial down on steroids.

“The intent is to use medications to ‘put the disease to sleep’ with as few side effects as possible,” he continues.

Your provider may also recommend immunosuppressing medications, which tamp down your immune system so it stops attacking your muscles.

But a lowered immune system can leave you vulnerable to infection. In those cases, IV treatments, like intravenous immunoglobulin (IVIG), can help get your immune system back in balance — strong enough to fight infection, but not overactive to the degree that it attacks your healthy cells.

Physical therapy

When myositis leaves you feeling weak or fatigued, it’s natural to want to save your strength. But exercise and physical therapy are among the most important parts of a myositis treatment plan.

“With ongoing inflammation, you can lose muscle, which accelerates weakness,” Dr. Chawla explains. “Physical therapy is a cornerstone of effective myositis care.”

Physical therapy can help you feel more energized and safely build your strength. It can also help you perform everyday tasks, like:

• Standing up from a chair
• Walking safely
• Raising your arms
• Climbing stairs
• Getting in and out of bed

Addressing the effects of myositis

After diagnosis, your care team may grow to include experts who can care for you in different ways.

“Multidisciplinary care is so important to managing myositis,” Dr. Chawla states. “Different specialists can help you manage all the different ways that the condition affects you.”

Depending on your myositis type and symptoms, you may work with:

• Speech-language pathologists for swallowing difficulties
• Dermatologists for skin disease
• Pulmonologists for lung concerns
• Neurologists for neuromuscular symptoms
• Physical therapists for mobility and strength
• Mental health professionals for the emotional impact of the condition

Dietary recommendations

Your team may encourage eating patterns that can help lower inflammation and support your overall well-being.

They may recommend following an anti-inflammatory diet, like the Mediterranean diet, to help keep your whole body healthy. On these eating plans, you eat fewer processed and packaged foods and more:

• Fruits
• Vegetables
• Healthy fats, like olive oil
• Lean proteins, like fish, chicken, eggs, beans and legumes

If myositis is affecting your ability to swallow safely, talk with your providers about dietary changes to make eating more comfortable.

And take caution with nutritional supplements. Some of them — including spirulina, elderberry and red yeast rice — have been linked to worsening certain forms of myositis.

Dr. Chawla also cautions against taking supplements without talking to your healthcare team first: “That’s especially true for any ‘immune-boosting’ supplements. You don’t want to add fuel to the fire.”

Mental health support

Living with myositis can take a heavy emotional toll. Weakness, fatigue and other symptoms can disrupt your work, family life, independence and daily routines. And the uncertainty of living with a rare autoimmune disease can feel isolating.

“Depression and mood changes are common and probably underrecognized,” Dr. Chawla empathizes.

What’s more, your mental health can affect your physical health — and vice versa. So, caring for your mental well-being becomes an important part of managing myositis.

Dr. Chawla offers these tips:

• Stay connected with family and friends.
• Communicate openly with your care team about your mental health.
• Join support groups to connect with others living with myositis.
• Seek mental health care, including crisis care if needed.

Follow-up care

Over time, myositis symptoms can become easier to manage. But even when you start feeling better, ongoing care remains important.

“You may feel and look good now,” Dr. Chawla says, “but it’s important to keep up with your appointments to make sure the disease stays in remission.”

Your care team will monitor your:

• Muscle strength
• Symptoms
• Medication side effects
• Lung function
• Blood work and muscle enzyme levels

And don’t hesitate to reach out if you’re experiencing any new or worsening symptoms, like:

• Muscle weakness
• Fatigue
• Trouble swallowing
• Difficulty standing
• Trouble lifting your arms
• Rashes
• Breathing changes

These can signal that the disease is becoming more active again. Prompt care is important to helping you get back on track quickly.

Final thoughts

A myositis diagnosis can be life-changing. But it doesn’t mean life stops.

With the right treatments in place, you can regain strength, improve your symptoms and return to the activities that matter most to you.

“We’ll take it one step at a time,” Dr. Chawla encourages. “We’re in this with you for the long haul.”