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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Tubular aggregate myopathy


Other Names for this Disease
  • Myopathy, tubular aggregate
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Your Question

I have tubular aggregate myopathy and am taking meloxicam. I am wondering if there is anything else I can take besides meloxicam. I have read about the side effects and this is why I am asking. I have recently started taking Karate and feel good when I take it. How much exercise is too much?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is tubular aggregate myopathy?

Tubular aggregate myopathy is a very rare muscle disease where the presence of tubular aggregates represent the major, if not sole, pathologic change in the muscle cell.  It is often characterized by muscle weakness or stiffness, cramps, and exercise induced muscle fatigue.[1][2] The exact cause of the condition is unknown. Sporadic and genetic forms have been reported.[1][3][4]
Last updated: 8/7/2009

How might tubular aggregate myopathy be treated?

Currently, we are unaware of any targeted therapies for tubular aggregate myopathy. There is very limited information in the medical literature regarding the treatment of this condition. Supportive therapies may be recommended depending on the severity of symptoms and associated complications. High dose steroids were reported to be effective in one case.[5] We were unable to find information specific to the use of meloxicam for treatment of tubular aggregate myopathy. We encourage you to discuss your questions and concerns about this drug with your healthcare provider.
Last updated: 10/26/2011

For people with tubular aggregate myopathy, how much exercise is too much?

Currently, there are no well established guidelines regarding this issue. The safety of exercise for people with neuromuscular diseases in general has long been debated. It can be difficult to define where the benefits of exercise becomes offset by the risk of muscle damage. In general, most experts agree that moderate exercise is safe.[6] We encourage you to discuss this question further with your healthcare provider.
Last updated: 10/26/2011

References
  • Gilchrist JM, Ambler M, Agatiello P. Steroid-responsive tubular aggregate myopathy. Muscle & Nerve. 1991;
  • Chevessier F et al. Tthe origin of tubular aggregates in human myopathies. J Pathol. 2005;
  • Kim NR, Suh YL. Tubular aggregate myopathy: A case report. J Korean Med Sci. 2003;
  • Pandit L, Narayanappa G, Bhat I, Thomas V. Case study: Autosomal recessive tubular aggregate myopathy in an Indian family. European Journal of Paediatric Neurology. 2008;
  • Gilchrist JM, Ambler M, Agatiello P. Steroid-responsive tubular aggregate myopathy. Muscle Nerve. 1991 Mar;14(3):233-6; http://www.ncbi.nlm.nih.gov/pubmed/2041544. Accessed 10/26/2011.
  • Staying Healthy with a Chronic Disease. Muscular Dystrophy Association. http://www.mda.org/publications/quest/q93exercise.html. Accessed 10/26/2011.