Myositis is a rare condition that most people haven’t heard of until they or a loved one is diagnosed. To give you more context, myositis is a group of autoimmune diseases that cause muscle inflammation, weakness, fatigue, and, in some cases, pain. Around 75,000 people in the U.S. are affected by myositis, and researchers are working to better understand the cause and how best to treat this rare condition. At CSI Pharmacy, we believe knowledge is empowering, which is why we’re breaking down what myositis is, what causes myositis, symptoms of myositis, types of myositis, and treatments for myositis. Our goal is to help patients and families feel informed and supported throughout their journey. 

What Causes Myositis? 

Myositis is a general term for chronic inflammation of the muscles. Unlike the soreness you might feel after exercise, this inflammation is persistent, progressive, and is usually caused by the body’s own immune system mistakenly attacking healthy muscle tissue. 

Because myositis is an autoimmune disease, it doesn’t go away on its own and often requires medical intervention such as medication, physical therapy, and, in many cases, immunoglobulin (Ig) therapy.  

The exact cause of myositis isn’t always known, but research points to a combination of autoimmune activity, genetic factors, and environmental triggers. In some cases, myositis can develop after an injection or may be linked to an autoimmune condition. 

Myositis Symptoms 

Identifying myositis symptoms early can make a big difference in managing conditions. Common Myositis symptoms include: 

Since symptoms can vary and can also overlap with other conditions, myositis is often misdiagnosed or overlooked, which can delay proper treatment. If you’re experiencing these symptoms, be sure to discuss them with your healthcare provider to check whether myositis could be the cause. 

Types of Myositis 

There are several types of myositis that can be brought about for different reasons, such as age, gender, and other conditions. 

Inclusion Body Myositis (IBM) 

IBM is a type of myositis that is more common in adults over 45 years of age. inclusion body myositis (IBM) leads to slow, progressive muscle weakness and difficulty gripping or walking. It is more common in men and slowly progresses to cause a gradual weakening of the muscles. 

Dermatomyositis (DM) 

Dermatomyositis (DM) affects both your muscles and skin. It can cause weakness in the muscles closest to the center of the body like the neck, hip, thighs, upper arms and shoulder muscles as well as skin rashes. It’s more common in women and can cause several complications, such as trouble swallowing, aspiration pneumonia, calcium deposits (hardened bumps or sheets under the skin), and breathing problems. 

Polymyositis (PM) 

According to The Myositis Association, polymyositis (PM) is an inflammatory disease that can cause “weakness in the muscles closest to the center of the body, like the shoulders, forearms, hips, thighs, neck, and back.” It can also cause muscle pain, increase fall risk, difficulty getting up from a fall, shortness of breath, chronic dry cough, or difficulty swallowing (dysphagia). 

Immune-Mediated Necrotizing Myopathy (IMNM) 

Immune-mediated necrotizing myopathy (INMN), also known as necrotizing autoimmune myopathy (NAM), can present like polymyositis and causes the death of muscle cells closest to the body’s center, such as shoulders, forearms, hips, thighs, neck and back. 

Juvenile Myositis (JM) 

Juvenile myositis (JM) includes juvenile dermatomyositis (JDM) which is the most frequent form and juvenile polymyositis (JPM) which is extremely rare. It can begin in early childhood and affects girls twice as often as boys. A skin rash is often the first sign of JDM, while JPM patients do not experience skin symptoms. Both conditions include weakening of muscles towards the center of the body. Other signs may include falling, weaker voice (dysphonia), or problems swallowing (dysphagia). About half of the children with JDM have pain in their muscles. Some children may also develop calcinosis (hardened lumps or sheets of calcium under the skin).  

Myositis Treatments 

Managing myositis often involves a combination of therapies tailored to each patient’s specific condition and symptoms. Treatments can include medications, physical therapy, and targeted treatments to address certain complications. For many patients, immunoglobulin (Ig) therapy can help jumpstart the immune system and reduce muscle inflammation. Intravenous immunoglobulin (IVIg) and subcutaneous immunoglobulin (SCIg) through CSI Pharmacy offers myositis patients personalized, convenient care that can improve quality of life while supporting long-term disease management. 

Myositis Resources 

A myositis diagnosis can feel overwhelming, but there are resources available to provide support, education, and connection. These organizations and communities are dedicated to helping patients and families navigate their treatment journey. 

The Myositis Association (TMA) 

The Myositis Association is a leading nonprofit dedicated to improving the lives of people living with myositis. They offer educational materials, patient support groups, clinical trial information, and opportunities to connect with others facing similar challenges. 

Cure JM Foundation 

Focused on juvenile myositis, the Cure JM Foundation provides research funding, family support, and advocacy to improve outcomes for children with JM. Their programs help families feel empowered and supported. 

Myositis Support & Understanding (MSU) 

MSU offers a comprehensive website filled with practical tools, educational resources, and a strong online community for patients and caregivers. Their mission is to educate, advocate, and provide meaningful support. 

Share your story on social media by using the hashtag #MyositisLIFE 

IVIG & SCIG Support Community 

Founded by CSI Pharmacy, this private Facebook group provides education and support for individuals and their caregivers that are navigating IVIg or SCIg treatment. It’s a welcoming space to ask questions, share personal stories, and connect with others who are managing rare and chronic diseases, like myositis.  

Living with Myositis 

Myositis is a rare and complex condition, but with the right care plan, many patients can manage their symptoms and maintain daily activities. Treatments like IVIg and SCIg provide a personalized approach to therapy, allowing patients to receive care in the comfort of their home. By understanding the condition, recognizing symptoms, and exploring different treatment options, patients can feel empowered to manage their myositis diagnosis to achieve the best outcome. See how CSI Pharmacy can help you manage your myositis with Ig therapy.