Myositis Awareness Month aims to reduce potentially fatal misdiagnosis

Bob Goldberg
Bob Goldberg

For some patients with myositis, an early diagnosis can mean the difference between life and death, according to Bob Goldberg, executive director of the Myositis Association.

“Delay in treatment can prove harmful and even fatal,” Goldberg told Healio Rheumatology. “Because of its rarity, many physicians will never see a person with myositis in their entire career, or, if they do, will misdiagnose the disease because of their unfamiliarity with myositis. The Myositis Association works to educate physicians about myositis and provide patients with the resources they need to cope with this debilitating disease.”

As May is Myositis Awareness Month, the group is reaching out to physicians and practices to make sure health care providers have the knowledge and tools they need to properly recognize and treat the disease. In addition, the Myositis Association helps patients connect with physicians with experience in treatment.

“Greater awareness of myositis among the public and physician community will lead to earlier diagnosis and better outcomes,” Goldberg said. “The Myositis Association helps patients get to the expert physicians who treat this rare disease so that damage from the disease is minimized.”

According to the Myositis Association, between 50,000 and 75,000 people in the United States have been diagnosed with myositis, which includes dermatomyositis, polymyositis, inclusion-body myositis, necrotizing myopathy and juvenile forms of the disease. The disease causes severe pain, weakness, difficulty moving and standing, chronic disability, debilitating skin rashes and other symptoms.

Patients with the disease often face other life-threatening conditions, such as interstitial lung disease, antisynthetase syndrome, and a higher risk for cancer and other diseases. According to the group, myositis can be difficult to recognize, with a correct diagnosis often requiring, on average, more than 3.5 years and five doctors.

As part of its effort to promote knowledge of the disease, the Myositis Association has medical experts from around the globe available to speak about the condition. The group’s medical advisory board includes 22 myositis researchers from the NIH, the Myositis Center at Johns Hopkins University, the Mayo Clinic and other American institutions, as well as others from the Netherlands, the United Kingdom, France and Sweden.

To help raise awareness of the disease during May, Healio Rheumatology presents the latest news coverage regarding myositis.

Rheumatic adverse effects of checkpoint inhibitor therapy chronic in 50% of patients

The potential rheumatic side effects of checkpoint inhibitor therapy in patients with cancer can include arthralgia, arthritis, polymyalgia rheumatica, giant cell arteritis, myositis, sicca syndrome and systemic lupus erythematosus, and can be chronic in approximately 50% of patients. Read More.

Patients' demographic, comorbidity profiles vary considerably by myositis subtype

A survey of patients with myositis revealed considerable variation between disease manifestations, but all myositis patients were 23% more likely to have a second autoimmune disorder. Read More.

MRI may detect disease activity in patients with myositis

The use of MRI may add value to the detection of disease activity in patients with myositis compared to the measurement of serum creatine kinase levels. Read More.

Myositis antibodies, clinical features may predict disease course in juvenile patients

Myositis autoantibodies, particularly anti-p155/140, certain clinical features and environmental exposures were associated with a chronic disease course compared to patients with juvenile idiopathic inflammatory myositis who had a monocyclic or polycyclic course of disease. Read More.

Visfatin levels linked to disease activity in certain patients with myositis

Patients with myositis who had positive anti-Jo-1 antibody status had higher serum levels of visfatin linked to higher clinical muscle involvement based on a VAS. Read More.

Myositis patients with anti-jo-1 antibodies may have more severe muscle and lung symptoms

Patients with myositis who tested positive for anti-Jo-1 antibodies had more severe muscle and lung involvement compared to patients with anti-PM-Scl antibodies. Read More.

Myositis uncommon, treatable in many patients with primary Sjögren’s syndrome

The prevalence of myositis in patients with primary Sjögren’s syndrome is low and mostly presents as an overlapping syndrome that usually responds to treatment with immunosuppressants. Read More.

Bob Goldberg
Bob Goldberg

For some patients with myositis, an early diagnosis can mean the difference between life and death, according to Bob Goldberg, executive director of the Myositis Association.

“Delay in treatment can prove harmful and even fatal,” Goldberg told Healio Rheumatology. “Because of its rarity, many physicians will never see a person with myositis in their entire career, or, if they do, will misdiagnose the disease because of their unfamiliarity with myositis. The Myositis Association works to educate physicians about myositis and provide patients with the resources they need to cope with this debilitating disease.”

As May is Myositis Awareness Month, the group is reaching out to physicians and practices to make sure health care providers have the knowledge and tools they need to properly recognize and treat the disease. In addition, the Myositis Association helps patients connect with physicians with experience in treatment.

“Greater awareness of myositis among the public and physician community will lead to earlier diagnosis and better outcomes,” Goldberg said. “The Myositis Association helps patients get to the expert physicians who treat this rare disease so that damage from the disease is minimized.”

According to the Myositis Association, between 50,000 and 75,000 people in the United States have been diagnosed with myositis, which includes dermatomyositis, polymyositis, inclusion-body myositis, necrotizing myopathy and juvenile forms of the disease. The disease causes severe pain, weakness, difficulty moving and standing, chronic disability, debilitating skin rashes and other symptoms.

Patients with the disease often face other life-threatening conditions, such as interstitial lung disease, antisynthetase syndrome, and a higher risk for cancer and other diseases. According to the group, myositis can be difficult to recognize, with a correct diagnosis often requiring, on average, more than 3.5 years and five doctors.

As part of its effort to promote knowledge of the disease, the Myositis Association has medical experts from around the globe available to speak about the condition. The group’s medical advisory board includes 22 myositis researchers from the NIH, the Myositis Center at Johns Hopkins University, the Mayo Clinic and other American institutions, as well as others from the Netherlands, the United Kingdom, France and Sweden.

To help raise awareness of the disease during May, Healio Rheumatology presents the latest news coverage regarding myositis.

Rheumatic adverse effects of checkpoint inhibitor therapy chronic in 50% of patients

The potential rheumatic side effects of checkpoint inhibitor therapy in patients with cancer can include arthralgia, arthritis, polymyalgia rheumatica, giant cell arteritis, myositis, sicca syndrome and systemic lupus erythematosus, and can be chronic in approximately 50% of patients. Read More.

Patients' demographic, comorbidity profiles vary considerably by myositis subtype

A survey of patients with myositis revealed considerable variation between disease manifestations, but all myositis patients were 23% more likely to have a second autoimmune disorder. Read More.

MRI may detect disease activity in patients with myositis

The use of MRI may add value to the detection of disease activity in patients with myositis compared to the measurement of serum creatine kinase levels. Read More.

Myositis antibodies, clinical features may predict disease course in juvenile patients

Myositis autoantibodies, particularly anti-p155/140, certain clinical features and environmental exposures were associated with a chronic disease course compared to patients with juvenile idiopathic inflammatory myositis who had a monocyclic or polycyclic course of disease. Read More.

Visfatin levels linked to disease activity in certain patients with myositis

Patients with myositis who had positive anti-Jo-1 antibody status had higher serum levels of visfatin linked to higher clinical muscle involvement based on a VAS. Read More.

Myositis patients with anti-jo-1 antibodies may have more severe muscle and lung symptoms

Patients with myositis who tested positive for anti-Jo-1 antibodies had more severe muscle and lung involvement compared to patients with anti-PM-Scl antibodies. Read More.

Myositis uncommon, treatable in many patients with primary Sjögren’s syndrome

The prevalence of myositis in patients with primary Sjögren’s syndrome is low and mostly presents as an overlapping syndrome that usually responds to treatment with immunosuppressants. Read More.