Frequently Asked Questions

These FAQs can help you quickly find what is most important to you about dermatomyositis (DM) or polymyositis (PM).

 

What causes dermatomyositis?

Dermatomyositis is thought to be the result of an overactive immune system. A normal immune system protects the body from infection and virus. When the immune system attacks normal, healthy tissue, it can cause inflammation, swelling, and other problems.

Many times, dermatomyositis is idiopathic. That means the exact cause of the disease is not known. But there are some theories about the causes of this condition. These include:

  • Cancer—Some types of cancers may be associated with dermatomyositis
  • Infection—A viral infection of the muscles may cause the inflammation that occurs in dermatomyositis
Learn more
 

What is an autoimmune disease?

An autoimmune disease is one in which the immune system attacks healthy tissue. Normally, the immune system protects your body from outside invaders. It can detect anything from a virus to a splinter. Then, it attacks the invader. Autoimmune disease causes the immune system to become confused and attack healthy tissue.

Learn more
 

How common is dermatomyositis?

Dermatomyositis is a rare disease. In fact, it is believed that only about one in 5,000 people have dermatomyositis (or polymyositis) in the United States today. Anyone can get dermatomyositis. But some people are more likely to be diagnosed with it than others.

Learn more
 

What may increase your risk of getting dermatomyositis?

Anyone can get dermatomyositis. But some people are more likely to have it than others. For example, twice as many women have dermatomyositis as men.

Learn more
 

Are certain age groups more likely to get dermatomyositis?

Anyone can get dermatomyositis. But some people are more likely to have it than others. In adults, dermatomyositis typically occurs in the late 40s through the early 60s.

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What are the symptoms of dermatomyositis?

Symptoms of dermatomyositis can include a purple or red skin rash that can appear on your face (including eyelids), neck, shoulders, upper chest, and back. Additionally, the skin on your knuckles, elbows, or knees may become scaly or red. This is known as Gottron’s rash. Other symptoms can include muscle weakness, fatigue, muscle stiffness and soreness, trouble swallowing, weight loss, low fever, and lumps under the skin from calcium deposits. Some people may also experience shortness of breath and certain heart problems.

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If I have dermatomyositis do I need to take precautions against getting too much direct sunlight?

Like everyone, you should avoid direct sunlight. But especially with a condition such as dermatomyositis, you should wear sunscreen and protective clothing at all times. In addition, talk to your doctor about steps you can take to protect yourself from too much sunlight.

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How is dermatomyositis diagnosed?

Tests to get a diagnosis include: magnetic resonance imaging (MRI), electromyography (EMG), muscle biopsy, skin biopsy, and blood tests. Blood tests will check for creatine phosphokinase (CPK) levels in your blood. A high level of CPK in your blood is a sign of muscle disease such as DM.

Learn more
 

Can dermatomyositis be cured?

Currently there is no cure, but there are treatments available to help control and improve symptoms. These medications include steroids, immunosuppressant agents, biologic agents, and other types of treatment. Talk to your healthcare team about the right treatment option(s) for you.

Learn more
 

How can dermatomyositis be managed?

There are medications that may help manage symptoms. There are also home modifications that may help to ease one’s day-to-day living. These simple changes can help you conserve energy and protect your muscles. To get started, keep appliances within easy reach and your home free of clutter. These are just 2 examples. There are many more steps you can take to help manage your condition.

Physical therapy and exercise have also been shown to help people with DM manage their condition. These activities may help strengthen damaged muscles. In addition, mild to moderate exercise under the care of a doctor may help to improve your ability to perform activities of daily living, improve strength and balance, increase walking speed, and reduce muscle inflammation.

Ask your doctor or physical therapist about what type of exercise may be right for you.

Learn more
 

What kind of doctors are involved in treating dermatomyositis?

There can be several healthcare professionals involved in your treatment. They can include dermatologists, rheumatologists, pulmonologists, physical therapists, psychologists, neurologists, cardiologists, nutritionists, and speech therapists.

Learn more
 

What treatments are available?

There is no cure for dermatomyositis. But certain treatments are available. These may help control and improve symptoms for some people. These treatments include steroids, immunosuppressant agents, biologic agents, and other types of treatment. Talk to your healthcare team about the right treatment option(s) for you.

Learn more
 

Do these treatment options cause any side effects?

As with most medicines, these treatments come with risks and benefits. Speak with your doctor about which treatment option(s) may be right for you.

Learn more
 

What changes should I make in my day-to-day life?

It’s important to make co-workers and family members aware of your situation and any special treatment you may require. Making changes to your home’s layout may help make getting around easier. Simple changes in your home can help you conserve energy and protect your muscles. To get started, keep appliances within easy reach and your home free of clutter. These are just 2 examples. There are also appliances that may help you manage daily in your home, such as a tub grab bar, tub transfer bench, over-the-toilet commode, electric jar opener, doorknob extenders, spring-loaded tools, and more.

Learn more
 

Are there any foods to stay away from if you have dermatomyositis?

Dermatomyositis is an inflammatory muscle disease. Muscle tissue becomes inflamed when the immune system attacks it. Some health experts believe that an anti-inflammatory diet might help to relieve your symptoms. Soft drinks, sugar, white flour products, and “junk” or packaged foods should be avoided. These foods are high in omega-6 fatty acids. Also, limit the amount of salt you eat, and avoid foods that are rich in saturated and polyunsaturated fats, such as:

  • - Corn oil
  • - Cottonseed oil
  • - Sunflower oil

Always talk to your healthcare team before making a change to your diet.

Learn more
 

Are there any foods to purposely include in my diet?

Dermatomyositis is an inflammatory muscle disease. Muscle tissue becomes inflamed when the immune system attacks it. Some health experts believe that an anti-inflammatory diet might help to relieve your symptoms. Certain foods are considered anti-inflammatory. These include blueberries, spinach, strawberries, herring, mackerel, salmon, sardines, fresh pineapple, and fresh papaya. In addition, foods that are high in protein and calcium are also important to include, such as skim and low-fat milk and low-fat sugarless yogurt.

Always talk to your healthcare team before making a change to your diet.

Learn more
 

Are there exercises to consider for someone with dermatomyositis?

Exercises called “seated yoga” are helpful for people with physical limitations. Studies have shown that physical therapy and exercise may be helpful for people living with dermatomyositis. Depending on your condition, it may be recommended as a part of your treatment plan. Under the care of a doctor, exercise may improve your ability to perform activities of daily living, provide an enhanced quality of life, improve strength and balance, increase walking speed, and protect you from further muscle damage.

Always talk with your doctor before starting an exercise routine. Or ask to be referred to a physical therapist.

Learn more
 

How can a care partner avoid stress?

It’s important that caregivers take time for themselves and not forget about their own needs. By managing oneself, a caregiver can be better equipped to care for his or her loved one. For example, caregivers should always keep up with their own medical needs and appointments, get plenty of rest, eat healthy, and stay connected with loved ones and friends.

Learn more
 

Are there any support resources for patients or caregivers?

Caregivers should research local respite care opportunities. Respite care is care that lets a regular caregiver step back, take a break, and recharge. Sometimes respite care is provided by volunteers. Professionals can also be hired if needed. The length of time caregivers take off can vary. Respite care can take several forms. These include traditional home-based care, adult day care, skilled nursing, home health aides, and short-term institutional care. In addition, caregivers can also connect with other caregivers through support groups and social networks.

Learn more
 

What causes polymyositis?

Polymyositis is thought to be the result of an overactive immune system. A normal immune system protects the body from infection and virus. When the immune system attacks normal, healthy tissue, it can cause inflammation, swelling, and other problems.

Many times, polymyositis is idiopathic. That means the exact cause of the disease is not known. But, there are some theories about the causes of polymyositis, including:

  • Cancer—Some types of cancers may be associated with polymyositis
  • Infection—A viral infection of the muscles may cause the inflammation that occurs in polymyositis
Learn more
 

What is an autoimmune disease?

An autoimmune disease is one in which the immune system attacks healthy tissue. Normally, the immune system protects your body from outside invaders. It can detect anything from a virus to a splinter. Then, it attacks the invader. Autoimmune disease causes the immune system to become confused and attack healthy tissue.

Learn more
 

How common is polymyositis?

Polymyositis is a rare disease. In fact, it is believed that only about one in 5,000 people have polymyositis (or dermatomyositis) in the United States today. Anyone can get polymyositis. But some people are more likely to be diagnosed with it than others.

Learn more
 

What may increase your risk of getting polymyositis?

Polymyositis occurs generally in people who are in their 30s through 50s. Twice as many women have polymyositis as men. Also, it is more common in African Americans than Caucasians.

Learn more
 

Are certain age groups more likely to get polymyositis?

Polymyositis occurs generally in people who are in their 30s through 50s.

Learn more
 

What are the symptoms of polymyositis?

The major symptom of polymyositis is muscle weakness, including a loss of strength in the hips and legs, and weakness in the shoulders or neck. These muscles can also grow weaker over time. In addition, other symptoms may include difficulty swallowing or speaking, mild joint or muscle pain, fatigue, weight loss, and fever. Some people may also experience shortness of breath, and possible heart problems.

Learn more
 

How is polymyositis diagnosed?

Tests to get a diagnosis include: magnetic resonance imaging (MRI), electromyography (EMG), muscle biopsy, and blood tests. Blood tests will check for creatine phosphokinase (CPK) levels in your blood. A high level of CPK in your blood is a sign of muscle disease such as PM.

Learn more
 

Can polymyositis be cured?

Currently there is no cure, but there are treatments available to help control and improve symptoms. These medications include steroids, immunosuppressant agents, biologic agents, and other types of treatment. Talk to your healthcare team about the right treatment option(s) for you.

Learn more
 

How can polymyositis be managed?

There are medications that may help manage symptoms. There are also home modifications that may help to ease one’s day-to-day living. These simple changes can help you conserve energy and protect your muscles. To get started, keep appliances within easy reach and your home free of clutter. These are just 2 examples. There are many more steps you can take to help manage your condition.

Physical therapy and exercise have also been shown to help people with PM manage their condition. These activities may help strengthen damaged muscles. In addition, mild to moderate exercise under the care of a doctor may help to improve your ability to perform activities of daily living, improve strength and balance, increase walking speed, and reduce muscle inflammation.

Learn more
 

What kind of doctors are involved in treating polymyositis?

There can be several healthcare professionals involved in your treatment. They can include rheumatologists, pulmonologists, physical therapists, psychologists, neurologists, cardiologists, nutritionists, and speech therapists.

Learn more
 

What treatments are available?

There is no cure for polymyositis. But certain treatments are available. These may help control and improve symptoms for some people. These treatments include steroids, immunosuppressant agents, biologic agents, and other types of treatment. Talk to your healthcare team about the right treatment option(s) for you.

Learn more
 

Do these treatment options cause any side effects?

As with most medicines, these treatments come with risks and benefits. Speak with your doctor about which treatment option(s) may be right for you.

Learn more
 

What changes should I make in my day-to-day life?

It’s important to make co-workers and family members aware of your situation and any special treatment you may require. Making changes to your home’s layout may help make getting around easier. Simple changes in your home can help you conserve energy and protect your muscles. To get started, keep appliances within easy reach and your home free of clutter. These are just 2 examples. There are also appliances that may help you manage daily in your home, such as a tub grab bar, tub transfer bench, over-the-toilet commode, electric jar opener, doorknob extenders, spring-loaded tools, and more.

Learn more
 

Are there any foods to stay away from if you have polymyositis?

Polymyositis is an inflammatory muscle disease. Muscle tissue becomes inflamed when the immune system attacks it. Some health experts believe that an anti-inflammatory diet might help to relieve your symptoms. Soft drinks, sugar, white flour products, and “junk” or packaged foods should be avoided. These foods are high in omega-6 fatty acids. Also, limit the amount of salt you eat, and avoid foods that are rich in saturated and polyunsaturated fats, such as:

  • - Corn oil
  • - Cottonseed oil
  • - Sunflower oil

Always talk to your healthcare team before making a change to your diet.

Learn more
 

Are there any foods to purposely include in my diet?

Polymyositis is an inflammatory muscle disease. Muscle tissue becomes inflamed when the immune system attacks it. Some health experts believe that an anti-inflammatory diet might help to relieve your symptoms. Certain foods are considered anti-inflammatory. These include blueberries, spinach, strawberries, herring, mackerel, salmon, sardines, fresh pineapple, and fresh papaya. In addition, foods that are high in protein and calcium are also important to include, such as skim and low-fat milk and low-fat sugarless yogurt.

Always talk to your healthcare team before making a change to your diet.

Learn more
 

Are there exercises to consider for someone with polymyositis?

Exercises called “seated yoga” are helpful for people with physical limitations. Studies have shown that physical therapy and exercise may be helpful for people living with polymyositis. Depending on your condition, it may be recommended as a part of your treatment plan. Under the care of a doctor, exercise may improve your ability to perform activities of daily living, provide an enhanced quality of life, improved strength and balance, increase walking speed, and protect you from further muscle damage.

Learn more
 

How can a care partner avoid stress?

It’s important that caregivers take time for themselves and not forget about their own needs. By managing oneself, a caregiver can be better equipped to care for his or her loved one. For example, caregivers should always keep up with their own medical needs and appointments, get plenty of rest, eat healthy, and stay connected with loved ones and friends.

Learn more
 

Are there any support resources for patients or caregivers?

Caregivers should research local respite care opportunities. Respite care is care that lets a regular caregiver step back, take a break, and recharge. Sometimes respite care is provided by volunteers. Professionals can also be hired if needed. The length of time caregivers take off can vary. Respite care can take several forms. These include traditional home-based care, adult day care, skilled nursing, home health aides, and short-term institutional care. In addition, caregivers can also connect with other caregivers through support groups and social networks.

Learn more