Inclusion Body Myositis Follow-up

Updated: Jun 08, 2018
  • Author: Michael P Collins, MD; Chief Editor: Nicholas Lorenzo, MD, CPE, MHCM, FAAPL  more...
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Further Outpatient Care

Frequency of follow-up visits is contingent upon the patient's rate of progression and need for symptom control as described above.



Risk of falls may be assessed best by a physical therapist.

If the patient's ability to perform his or her job is questioned, a functional or physical capacity evaluation may be appropriate. This typically is performed through physical therapy or a rehabilitation center. Patients are understandably reluctant to surrender their independence in function. However, patients must not be a danger to themselves or others, whether at their employment or in their activities of daily living.

If the patient's ability to operate a motor vehicle is of concern, then this should be noted in the chart and the patient should be advised to seek further evaluation, either through formal assessment at a rehabilitation center or through their local driving licensing authority. Certification for disabled parking should be made when appropriate.



The course of s-IBM is variable but is typically one of slow progression.

Mean decrease in muscle strength over time has been reported anywhere from 3.5% to 15.6% per year. [67, 70, 118] In a long-term follow-up study, decline in muscle strength was reported to be most pronounced in the lower legs. [67]

Patients with an earlier age of onset tend to have a slower rate of progression than those with onset after age 60 years. [64, 119]

The mean time between symptom onset and walker use is 10.2 ± 5.8 years in patients with disease onset before 60 years and 5.7 ± 5.0 years in those with disease onset after age 60 years. The wide range reported reflects a significant variability between individuals.


Patient Education

The treating physician must maintain an ongoing dialogue with patients to keep them informed about the status of their disease.

While patient issues should be addressed as needed, the physician must be proactive and anticipate issues such as difficulties with driving.

The treating physician always should maintain a balance between the reality of the patient's disease progression and a sense of hope and ability for the patient to cope with the disease.

Information resource for patients:

  • The Myositis Association provides information on polymyositis, dermatomyositis, and s-IBM.

  • Address: 1737 King St, Suite 600; Alexandria, VA 22314

  • DC area phone: 703-299-4850

  • Toll-free phone: 800-821-7356