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Inclusion Body Myositis (IBM).

Site presented by Bill Tillier.

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Index.

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Introduction:

This web page presents information on inclusion body myositis. There are two main types; a spontaneous type that just strikes "out of the blue." It is the common type and is usually abbreviated as sIBM. The second type is extraordinarily rare, strikes very early (18-22) and is genetic. How the two types may be related is unknown.

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.

Here is a very general overview to begin with.

Note: some of the PDF files on this site are large and take considerable time to open.

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Key points:

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For new patients:

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Treatment:

Summary: No treatment is recognized as effective (as of 2013). Research does not support the use of any of the medications available today. 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." DOI 10.1007/s11926-013-0329-z

Unfortunately, it would appear that the side effects of all of the current medications far outweigh any benefits seen in sIBM. The best approach today (2013) is to manage the complications that may arise from the disease. Evaluation of swallowing and respiration are important considerations. Prevention of falls is an important consideration.

A cautionary note: there is sometimes 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.

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Management:

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.

The gentlemen in these pictures have not had proper management (with the use of pressure stockings) to prevent edema and they now face potentially serious complications.

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Research:

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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: http://clinicaltrials.gov/

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Other topics:

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Web sites for neuromuscular disorders:

The Myositis Association (formerly The Myositis Association of America (MAA)) http://www.myositis.org
TMA publishes an excellent newsletter called OUTLOOK.

Muscular Dystrophy Canada / Dystrophie musculaire Canada. http://www.muscle.ca/

The Muscular Dystrophy Campaign (England): http://www.muscular-dystrophy.org/

Support groups for myositis:

The [USA] Myositis Support Group: http://www.myositissupportgroup.org
Their general sIBM discussion group is at: http://www.myositissupportgroup.org/IBM/

The UK Myositis Support Group: http://www.myositis.org.uk/

Dermatomyositis and assisted living: http://www.assisted-living-directory.com/content/dermatomyositis-assisted-living.cfm

Web sites for IBM Information:

Homepage of Dagmar Slaven, an IBM patient. http://www.myomusings.com/

Here is an outstanding website presented by an IBM patient, Mike Shirk.

The Inclusion Body Myositis Foundation (IBMF)
Steven A. Greenberg, MD, Director
http://www.ibmfoundation.org/

The Muscular Dystrophy Association of America recently put IBM under its list of covered disorders.
They are at: http://www.mdausa.org
For their page on IBM, see: http://www.mdausa.org/disease/inclusion-body-myositis

The IBM Research Project. A research group, including Steven A. Greenberg, MD and Anthony A. Amato, MD, dedicated to understanding and finding treatment for sporadic inclusion body myositis (s-IBM) and other inflammatory myopathies. This is a multidisciplinary group, part of the Brigham and Women's Hospital, Department of Neurology, Division of Neuromuscular Disease, Harvard Medical School; the Children's Hospital Informatics Program; and the Harvard-MIT Division of Health Sciences and Technology. http://www.s-ibm.org/

IBM overview: http://www.patient.co.uk/doctor/inclusion-body-myositis

The Muscular Dystrophy Campaign (England) IBM overview:

National Institute of Neurological Disorders and Stroke (NINDS) site on IBM:. http://www.ninds.nih.gov/health_and_medical/disorders/inclusion_doc.htm

Selected Medical Related:

American Medical Association: http://www.ama-assn.org/

American Academy of Family Physicians: http://www.aafp.org/

Pub Med: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi The comprehensive site for most medical research done in the world.

Medline Plus http://medlineplus.gov/ Look up anything to do with health care on this site from, prescription drugs to local resources to symptoms and diseases.

RxList http://www.rxlist.com/script/main/hp.asp RxList is "the Internet drug index," and you search by prescriptions dispensed, names searched or just by letter.

Patient Care http://www.cumc.columbia.edu/health/index.html Columbia University Medical Center lists a number of patient resources, including tools for finding a doctor, dentist and hospital.

MediLexicon http://www.medilexicon.com/ At MediLexicon, you can use the medical dictionary search, hospital search, medical abbreviations search or read all the latest medical news.

InteliHealth http://www.intelihealth.com/IH/ihtIH This reference site has an Ask the Expert section, as well as a database full of information for diseases and conditions, from asthma to digestive issues to weight management to STDs.

Healthfinder http://www.healthfinder.gov/ This government site features a Drug Interaction Checker, a Health Library and consumer guides.

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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:

http://get.adobe.com/reader/

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Disclaimer:

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.

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IBM Facebook Page:

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Donate to Fund Research:

Research funding for a disease like inclusion body myositis is always a problem due to the rarity of the disorder. As far as I know, the only specific foundation for funding inclusion body myositis research is run by Dr. Stephen Greenberg of Harvard, a researcher himself.

The Inclusion Body Myositis Foundation (IBMF)

The Inclusion Body Myositis Foundation (IBMF) is a non-profit research foundation entirely dedicated to finding the cause of and treatment for the muscle disease inclusion body myositis.

Participate here.

Reach Our Goal (R.O.G) event on March 11th, 2014

Our Reach Our Goal (R.O.G) event on March 11th, 2014 is designed to solely support the Foundation of a leading IBM expert, Dr. Steven Greenberg, and ultimately find a cure. Dr. Greenberg's research has already resulted in a blood test to diagnose IBM and he is working with Novartis on a promising drug that is in an early clinical trial stage. We are very excited to host Dr. Greenberg at our event so he may share the results of his work and his optimism in finding a treatment. Thank you for your amazing support to help us to Reach Our Goal. Roger and Jennifer Gulrajani.

Reach Our Goal.

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Contact:

For comments or improvements, please contact Bill at e-mail: bill.tillier@gmail.com

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Page Created: April 06, 2001.

Revised as of December 1, 2013.

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