Inclusion Body Myositis (IBM) Treatment in Hyderabad: The Muscle Disease in Older Men That Does Not Respond to Steroids — and Why Getting the Diagnosis Right Matters More Than Getting the Steroids

This is one of the most common scenarios that prompts KIMS referral. If you have been on adequate prednisolone for 18 months with no clinical improvement — no improvement in rising from chairs, no improvement in CK normalisation, no functional gains — the diagnosis of polymyositis should be reconsidered. True polymyositis almost always shows some response to steroids within 3–6 months. Lack of response after 18 months strongly suggests an alternative diagnosis. IBM is the most likely alternative in an older patient, particularly if you are male and if the weakness pattern involves the hands (finger flexor weakness) and the quadriceps (knee buckling, falls). Please come to KIMS for a reassessment — call 040-44885000. A muscle biopsy review (or repeat biopsy) and anti-cN1A antibody testing can often resolve the diagnostic question. If IBM is confirmed, the most important step is a structured steroid taper to avoid further side effects.

Falls in a 67-year-old man caused by knee buckling are not normal ageing and warrant a neurological assessment. Age-related muscle loss (sarcopenia) does cause proximal weakness, but the specific pattern of IBM — quadriceps weakness disproportionate to other muscle groups, combined with difficulty gripping and bending the fingers — is not a normal ageing pattern. The quadriceps weakness of IBM is often severe enough to cause the knee to give way without warning, leading to falls that can cause fractures in an older person. Please bring your father to KIMS Neuroscience — call 040-44885000. The KIMS assessment takes approximately 90 minutes and includes manual muscle testing of the finger flexors and quadriceps, CK measurement, and EMG to determine whether the weakness pattern suggests IBM. Falls from knee buckling are preventable — with the right walking aids, physiotherapy, and home safety modifications — if the cause is identified.

Swallowing difficulty (dysphagia) in IBM is a serious complication that requires formal assessment — not just dietary modification at home. The swallowing problem in IBM arises from weakness of the pharyngeal muscles (the muscles that propel food from the throat into the oesophagus) and, specifically, from reduced relaxation of the upper oesophageal sphincter (the cricopharyngeal muscle). The consequence of untreated pharyngeal weakness is aspiration — food or liquid going into the lungs rather than the stomach — leading to aspiration pneumonia. This is the most common cause of IBM-related hospitalisation and a leading cause of death. At KIMS, the assessment includes a videofluoroscopic swallow study (a real-time X-ray of swallowing) to identify exactly where the problem is, followed by speech therapy modifications and, for selected patients with predominantly cricopharyngeal obstruction, a cricopharyngeal myotomy or dilatation procedure. Please call 040-44885000 urgently.

Honestly — as of 2025, no medication has been proven in a clinical trial to slow the progression of inclusion body myositis. This is one of the most frustrating aspects of IBM for patients and clinicians alike. Multiple immunosuppressive drugs (steroids, methotrexate, azathioprine, ciclosporin, IVIG, alemtuzumab) have been trialled and failed to slow functional decline. Newer approaches targeting the degenerative component of IBM (arimoclomol, anti-myostatin agents, TDP-43-targeting antisense oligonucleotides) are in active clinical trials globally. At KIMS, we are transparent about this: we do not prescribe steroids for IBM because they cause harm without benefit. What we do prescribe — physiotherapy, supervised exercise, swallowing management, occupational therapy adaptations, fall prevention — has genuine evidence of benefit for function and quality of life. Call 040-44885000 if you would like to discuss clinical trial access.

Concern about falling at home is entirely appropriate in IBM — and planning for it proactively is one of the most important things you can do. At KIMS, the occupational therapy and physiotherapy teams provide a home safety assessment that includes: identifying and removing trip hazards (loose mats, poor lighting, cluttered walkways); recommending grab rails in the bathroom, toilet, and at any step changes; assessing whether a shower chair is needed; discussing raised toilet seat height to compensate for quadriceps weakness that makes sitting to standing difficult; and recommending appropriate walking aids (walking stick, rollator frame, or quad cane depending on your current level of balance and quadriceps strength). For a person living alone, a medical alert device (a wearable emergency button) is strongly recommended — a fall that goes undetected for hours or days is the most dangerous scenario. Please call 040-44885000 to arrange a comprehensive KIMS occupational therapy and physiotherapy assessment.

Muscle biopsy remains the cornerstone of IBM diagnosis and is generally necessary for definitive confirmation, for two reasons. First, the clinical presentation of IBM overlaps with other conditions — particularly polymyositis (which requires different treatment) and myotonic dystrophy (which is genetic). Confirming the specific histological features of IBM — rimmed vacuoles, CD8+ T cell invasion, COX-negative fibres — avoids the error of treating IBM as idiopathic inflammatory myositis with steroids, which is common and harmful. Second, the anti-cN1A antibody (the supporting blood test for IBM) is only positive in 30–60% of IBM patients, so a negative test does not exclude the diagnosis. The 2024 ENMC criteria can define “probable IBM” on clinical and antibody grounds without biopsy in some patients, but “clinicopathologically defined IBM” — the most secure diagnosis — requires muscle biopsy. At KIMS, muscle biopsy is performed under local anaesthesia with minimum discomfort. The procedure takes approximately 45 minutes. Call 040-44885000.

The great majority of IBM cases are sporadic — they arise in individuals with no family history and are not inherited. The condition is called Sporadic IBM (sIBM) to distinguish it from the much rarer hereditary inclusion body myopathy (hIBM), which is a distinct genetic condition with different features and is inherited in an autosomal recessive or dominant pattern. If your family member has been confirmed to have sporadic IBM on muscle biopsy, there is no significant genetic risk to other family members and cascade genetic testing is not indicated. The risk to first-degree relatives is only marginally above the background population risk. If there is any diagnostic uncertainty — if the biopsy findings were atypical or if the clinical picture is unusual — a review at KIMS to exclude a hereditary myopathy is worthwhile. Call 040-44885000.