Update on Ig products in short supply

The FDA has issued a statement about the availability of immunoglobulin products, which many myositis patients depend upon for treatment of their disease. The statement says, in part: ” In the setting of the increased demand for Ig, other factors that ordinarily might not impact availability may have a greater effect. These could include uneven…

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My-PACER, a new research study, is recruiting

The Myositis Association (TMA) is partnering with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient Centered Tele-Research ( My-PACER ).” The investigators of this study (Drs. Rohit Aggarwal, Chester V. Oddis and Siamak Moghadam) have a long-standing interest in myositis. Dr. Aggarwal is also vice chair of TMA’s Medical Advisory Board….

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Ig products in short supply

Polymyositis, dermatomyositis, and necrotizing myopathy are diseases that are often treated with immunoglobulin (Ig) products, either intravenously (IV) or subcutaneously (SC). Many TMA members find IVIg or SCIg to be a very effective treatment. Recently, however, TMA has become aware of shortages of Ig products in some areas of the country. IVIg and SCIg are…

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Myositis can be deadly

TMA executive director Mary McGowan, TMA member and patient advisor Darlene Shelton, and pulmonologist Dr. Cheilonda Johnson were interviewed for an informative article by Ty Fenwick in the Indianapolis Recorder, an African American weekly newspaper in Indiana. The article, “Don’t confuse it with old age: Myositis diseases can be deadly,” highlights the disparity of risk…

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Living with myositis, a mystery to many

The following article about living with myositis appeared in the Orlando Sentinel on Friday, May 17, 2019. See the original article here. By Miyoshi Gordon-Matthews In 1995, I was playing basketball in the driveway with my then 9-year old son when I fell. I did not think much of it. Until the next day, when…

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