Inclusion Body Myositis (IBM).

Site presented by Bill Tillier.

Search the site.

Return to top


This web page presents information on inclusion body myositis (IBM). IBM is spontaneous — it just strikes "out of the blue" and is non-­inherited. It is usually called spontaneous inclusion body myositis, usually abbreviated as sIBM.

Hereditary inclusion body myopathy (hIBM) refers to a group of very rare inherited disorders; passed on from parents to children. "The hIBM diseases lack the two main characteristic features of IBM: its distinctive pattern of muscle weakness and the presence of muscle histological immune cell infiltration" (Greenberg, 2019). Greenberg (2019) points out that it is a mistaken impression to think IBM and hIBM reflect the same pathophysiological process that can either occur sporadically or be inherited: they are separate diseases.

Familial IBM (fIBM) refers to the occurrence of typical IBM within families: two or more cases within a single generation of siblings. This pattern is also seen in other autoimmune diseases, such as myasthenia gravis and multiple sclerosis.

This page is a good starting point for a person interested in sIBM and contains information suitable to take to a family physician. The site provides two levels of information, basic introductions and critical overview articles and also a more complex body of research / medical information, including summaries / reviews of some of the major scientific literature on sIBM.

Return to top

Key points:


The common early presentation of weakness is shown in red (above).

pattern late

Muscle weakness may occur in the diaphragm and the esophagus (illustrated in orange, above).

A recent illustration is helpful (Greenberg, 2019).



Weakness of finger flexion in patients attempting hand grip (make a fist) with partial involvement (above) and end-stage (below).


Return to top

For new patients:

Return to top


Summary: Based upon research, no treatment is recognized as effective for sIBM (as of 2017). Based upon their experience and opinions, doctors may try medications with IBM patients however, this is a clinical judgment where any possible benefits must be weighed against potential side effects.

"Conventional immunotherapies, albeit effective in other forms of myositis, seem to have only a transient or no beneficial effect on disease progression of IBM. So far, no established evidence-based treatment exists and therapy recommendations are based on expert opinion." From: Update on Treatment of Inclusion Body Myositis

Also see: Schmidt, K., & Schmidt, J. (2017). Inclusion body myositis: Advancements in diagnosis, pathomechanisms, and treatment. Current Opinion in Rheumatology,

Also see: Needham, M., & Mastaglia, F. L. (2016). Sporadic inclusion body myositis: A review of recent clinical advances and current approaches to diagnosis and treatment. Clinical Neurophysiology, 127(3), 1764-1773.

Unfortunately, it would appear that the side effects of all of the current medications far outweigh any benefits seen in sIBM. The best approach is to manage the complications that may arise from the disease. Evaluation of swallowing and respiration are critical, ongoing issues. Prevention of falls is an important consideration.

A cautionary note: there is a strong tendency for both doctors and patients to "want to do something" -- anything -- to try to slow down or reverse the symptoms of a major debilitating and chronic illness like IBM. For patients, it can be very frightening and frustrating to simply "do nothing." Caution must be used when no significant benefits of treatment can be demonstrated and when treatments all have significant potential side effects.

Return to top


When faced with a progressive disabling disease that has no effective and reliable treatment options, day to day management becomes critically important to avoid complications. Management involves two critical components; awareness and prevention. We need to be aware of the possible consequences of inclusion body myositis and be able to proactively prevent complications. Simple and consistent practices can prevent many of the complications that can threaten one's life.

Return to top

IBM Research:

Summary: sIBM is a very complex and challenging disease to research. In approximately the last 40 years of research, much has been learned about the disease, but frustratingly, more remains unknown. The understanding of sIBM and its causes is a very slowly evolving phenomenon.

2017: "For the past two decades, the field of sIBM research has been split with some researchers suggesting that sIBM pathogenesis begins with inflammation leading to myodegeneration and others favouring a primary degenerative myopathy stimulating autoimmunity. Now with emerging therapies aimed at targeting muscle degeneration and other therapies focused on immune modulation, it is essential to understand the connection between these two pathologies. A siloed approach that ignores one or the other will not advance future therapeutics. Instead, additive therapies or dual acting therapies that focus on both aspects of disease pathogenesis will likely need to be employed." From:

2019: "Currently, the evidence suggests that causality flows from autoimmunity to degeneration, not the reverse" (Greenberg, 2019).

Highlighted Research.

Current Research

Past Research/Other

Return to top

Other topics:

IBM Facebook pages:

Clinical Trials for sIBM

You can find information on the latest clinical trials on sIBM by going to this website and entering inclusion body myositis on the search line: NIH Clinical Trials:

Yale IBM Registry.

How to Use pdf files:

Note: some of the PDF files on this site are large and take considerable time to open. Pdf files are like a photocopy of an article. To use them you need to install a pdf reader (many computers already have one installed). If you click on a pdf file and you have a reader, it will open automatically. If you need to install a reader, it is easy. You can get a free reader download at:


Donate to Fund sIBM Research:

The Inclusion Body Myositis Foundation (IBMF).

Donation Suggestions of Cure IBM.

Mission Statement:

There are many excellent web sites that present information on various neuromuscular disorders. When I looked at the web, I was struck by how scattered the information was, and the fact that much of the information is very technical. Therefore, the primary intention of this site is to help integrate different sources and to provide background to help the reader cope with complex medical jargon and methods. I am not trying to be comprehensive and I do not want to be redundant and present information that is already covered elsewhere.


I am not a medical Doctor and this information is not intended to be read as medical advice nor is it a substitute for medical advice. Please consult your Physician if you have medical concerns. I have done my best to offer a layman's interpretation of this material. Any opinions offered are personal and do not reflect those of my employer. Thanks.


For comments or improvements, please contact Bill at e-mail:

Search by JRank

Page Created: April 06, 2001.

Return to top

free invisible hit counter