Myositis Insights

Cabaletta Bio's Therapy Shows Encouraging Results

New data shows that Cabaletta Bio's therapy helps patients with autoimmune conditions, including myositis, achieve significant improvements without needing immunosuppressants. This could lead to more effective treatments for myositis patients.

Myositis Support and UnderstandingFeb 14, 2025

The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” was published in Rheumatology

What Was This Study About?

This study looked at how common pain is in people living with myositis, a rare muscle disease that causes weakness and other symptoms. Researchers also wanted to understand how people with myositis manage their pain, including the use of opioid and non-opioid medications.

Who Conducted the Study?

The study was led by Myositis Support and Understanding (MSU), a patient-led advocacy group that wanted to highlight the pain experiences of people living with myositis.

How Was the Study Done?

MSU created a survey and shared it with its members. A total of 468 people responded, and 423 were included in the final analysis. The study focused on three types of myositis:

Dermatomyositis (DM)

Polymyositis (PM)

Inclusion Body Myositis (IBM)

Researchers then used statistical analysis to see how pain experiences differed among these groups.

Key Findings:

Pain is Very Common in Myositis

91.5% of participants reported having current or past pain, with almost all (99%) saying their pain was caused by myositis.

People with dermatomyositis (DM) were the most likely to experience pain (97.2%), while those with IBM had the lowest reported pain levels (80.9%).

Age Impacts Pain Experience

People over 60 years old were less likely to report pain.

Most People Use Pain Medication

Of the 387 people who reported pain, 335 (about 87%) said they used pain medications to manage it.

69% of them used opioid medications (strong pain relievers often prescribed for severe pain).

Different Myositis Types Didn’t Affect Choice of Non-Opioid Medications

The use of non-opioid medications (such as ibuprofen, acetaminophen, or neuropathic medications like gabapentin) was not linked to gender, age, or myositis type.

Why Does This Matter?

Pain is often overlooked in myositis, even though it has a major impact on quality of life. This study shows that pain management needs to be a bigger priority in myositis care. It also highlights the need for more research to find better and more effective treatments beyond opioids.

Bottom Line:

Pain is a major issue for people with myositis, and most rely on pain medications, including opioids. Doctors and researchers need to do more to address pain as a key part of myositis treatment.

Access The MSU Pain Paper Here: https://academic.oup.com/rheumatology/article/62/1/264/6586791

The Myositis AssociationFeb 12, 2025

When you’ve just been diagnosed with a rare, debilitating, chronic condition, it can be hard to find your footing. The whole terrain seems to be different, unfamiliar, and confusing. Here are 10 tips for first baby steps on your myositis journey from nurse Shawna Nielsen, who knows the territory well.

https://www.myositis.org/blog/shawnas-top-10-tips-for-the-newly-diagnosed/

The Myositis AssociationFeb 19, 2025

On Monday, February 10, 2025, Rich DeAugustinis, Vice Chair of TMA’s Board of Directors, testified to the Georgia Senate Committee on Health and Human Services in support of the Georgia Hope for Patients Act (S.B. 72).

This proposed legislation, sponsored by Georgia Senator Matt Brass, will allow patients who have severely debilitating or life-threatening illnesses to receive treatment with experimental therapies they would not otherwise have access to.

Read more in our latest blog!

https://www.myositis.org/blog/tma-board-vice-chair-testifies-in-support-of-georgias-hope-for-patients-act/