What is inclusion body myositis?

Inclusion Body Myositis (IBM) is a rare, progressive muscle disease characterized by chronic muscle inflammation and weakness. It is the most common acquired muscle disease in adults over 50, affecting approximately 20,000 people in the United States.

Sporadic IBM (sIBM), the most common form, is NOT inherited — it occurs randomly. However, about 67% of patients carry a specific HLA gene combination that makes them genetically susceptible. Hereditary Inclusion Body Myopathies (hIBM) are a separate group of genetic muscle diseases.

Is there a cure for IBM?

As of 2026, there are no FDA-approved treatments specifically for IBM. The disease is notoriously resistant to corticosteroids and immunosuppressive drugs. Physical therapy and adaptive strategies are the mainstay of management. Active research is underway with promising clinical trials.

Does IBM qualify for disability benefits?

Yes. IBM is listed under Section 11.15 (Disorders of the Peripheral Nervous System) in the SSA Blue Book for Social Security Disability Insurance (SSDI). The IBM Functional Rating Scale can support your application.

What exercises are safe with IBM?

Walking, aquatic therapy, light resistance training, balance training, and hand/finger exercises are all recommended for IBM patients. Start slowly, build over 6-12 weeks, and consult with a physical therapist who understands myositis.

Why is IBM often misdiagnosed?

IBM is frequently misdiagnosed as polymyositis, normal aging, fibromyalgia, ALS, or sarcopenia. The average diagnostic delay is 5-10 years from symptom onset because IBM shares symptoms with more common conditions.

Can At-Home Hand Exercises Help IBM Patients? A New Pilot Study Explores the Question

Hand weakness is one of the most disabling features of IBM. It affects everyday tasks like holding utensils, turning keys, buttoning shirts, and gripping handrails. Yet most IBM exercise research has focused on leg strength, leaving a gap in understanding what can be done for the hands.

A new pilot study published July 9, 2026 in Clinical and Experimental Rheumatology set out to explore whether a simple, low-cost hand exercise program could be feasible and beneficial for IBM patients.

What the Researchers Did

The team — based at the Perron Institute, University of Notre Dame Australia, Murdoch University, and Fiona Stanley Hospital — enrolled 13 IBM patients in a 12-week at-home program using TheraPutty, a moldable resistance putty that comes in different resistance levels.

Participants were assessed at baseline, 6 weeks, and 12 weeks. The assessments measured grip strength, pinch strength, dexterity (using the Nine-Hole Peg Test and Box and Block Test), and overall hand function (using the IBM Functional Rating Scale and Duruoz Hand Index).

What They Found

The study reported several results:

• Nine of 13 participants (69%) achieved at least 75% adherence to the program.

• In the intention-to-treat analysis (which includes all participants regardless of adherence), there were no significant changes in grip or pinch strength. However, the Box and Block Test — which measures how quickly participants can move small blocks between compartments — improved significantly in both hands.

• In the per-protocol analysis (which only includes participants who stuck closely to the program), significant improvements were seen in non-dominant 2-point pinch strength and bilateral 3-point pinch strength.

• Participants rated the programme as moderately acceptable (mean score 3.5 out of 5) and tolerable (3.4 out of 5).

The Challenges

The study also honestly reported the difficulties. Fatigue, pain, and difficulty using even the lowest resistance TheraPutty were the main barriers to adherence. Some participants could not tolerate the putty at all, which limited how much they could exercise.

This is an important finding in itself — it tells researchers that future studies may need to develop even gentler resistance options or alternative exercise tools for IBM patients whose hand weakness is more advanced.

What This Means

This is a pilot study with a small number of participants and no control group. The results should be interpreted as preliminary — they suggest that a home-based hand exercise program is feasible for many IBM patients and may offer some benefit, but larger, longer studies are needed to confirm and quantify any effects.

The researchers concluded that "a home-based TheraPutty programme is feasible and generally acceptable in IBM, with potential signals of benefit among adherent participants." They recommended that future studies refine treatment protocols to reduce fatigue and optimise efficacy.

For IBM patients interested in hand exercises, the current evidence supports gentle, regular hand movement as part of a broader exercise program. The TMA's IBM Home Exercise Program includes hand exercises. Always discuss exercise plans with your doctor or physical therapist.

Source

• Archer M, Cooper I, Beer K, Oehmen R, Doverty A, Panicker A, Needham M. "A pilot study to evaluate the efficacy of an at-home TheraPutty hand exercise intervention on strength and function in adults with inclusion body myositis." Clinical and Experimental Rheumatology. 2026 Jul 9. doi: 10.55563/clinexprheumatol/ba200h. PMID: 42446707.