What is myopathy?
Myopathy is a term used to describe any type of muscle disease resulting in muscle weakness. There are different kinds of myopathy which have different causes (Chawla, 2011):
- inflammatory myopathies,
- endocrine myopathies,
- hereditary myopathy, and
- drug- induced myopathy.
This page focuses on drug-induced myopathy because is it a side effect of steroids, which are commonly used in the treatment of cancer in children and young people.
What is steroid-induced myopathy?
When oral or intravenous steroids are used for a long time, drug induced myopathy is a common side effect (Surmachevska & Vivekandand, 2023). Dexamethasone is a type of steroid regularly used in the treatment of cancer. It can also be used to help reduce other treatment symptoms such as nausea and vomiting. However, dexamethasone also has the side effect of disrupting muscle protein arrangements and breaking them down. This disruption can lead to muscle atrophy (loss of muscle mass) and weakness, hence the term steroid-induced myopathy.
Steroid-induced myopathy can be described as acute or chronic depending on whether symptoms start at the beginning of steroid treatment or during ongoing maintenance treatment such as in Acute Lymphoblastic Leukaemia treatment (Nozaki & Prestronk, 2009).
Who is at risk of developing steroid-induced myopathy?
- Patients with acute lymphoblastic leukaemia (ALL), brain or central nervous system (CNS) tumours, lymphoma, non-Hodgkin lymphoma (NHL), hemophagocytic lymphohystiocytosis (HLH), Langerhans Cell Histiocytosis (LCH).
- People who lead a sedentary lifestyle and have inactive muscles, such as patients undergoing treatment for cancer.
- In an adult population, females tend to be more affected compared to males (Surmachevska & Vivekandand,2023).
- Patients with respiratory conditions are also more susceptible to myopathy, such as patients on mechanical ventilation (Nozaki & Prestronk, 2009).
What goes wrong in the body? (Pathophysiology)
Muscle biopsy tests of patients with steroid-induced myopathy are found to have less myosin which is a fibrous protein that help muscles contract to help movement. In more chronic myopathy, muscle biopsy also shows less type 2 b muscle fibres, which help fast-twitch speedy contractions (Chawla, 2011).
Signs and symptoms of steroid myopathy
Children and young people may get acute generalised weakness (starts suddenly but may not last long if steroids are stopped). It may or may not affect respiratory muscles. It tends to occur five to seven days after starting high-dose steroid treatment.
Muscle bulk may be normal despite muscle weakness. A pattern of muscle weakness is often seen. The pattern is symmetrical from the trunk and neck muscles in the middle of the body, sometimes described as proximally, to the muscles further away, sometimes described as distally. Certain muscle groups are more prone to weakness than others. These are gluteal (bottom muscles), quadriceps (thigh muscles) and gastrocnemius (calf muscles) (Mitchell et al., 2005).
In chronic steroid myopathy, proximal muscle weakness is more pronounced than distal muscle weakness. Chronic means that it develops slowly and lasts a long time. Severe weakness of the anterior tibialis muscle (an ankle muscle) can be found. Pelvic and hip muscles are usually more affected and earlier than shoulder muscles (Surmachevska & Vivekandand, 2023).
Truncal obesity, secondary to the cushingoid effects of the steroids, is also a common feature. Patients may report muscle cramp, muscle pain and stiffness, alongside muscle weakness (Chawla, 2011).
The cranial muscles can be involved with signs and symptoms including ptosis (dropping eye lid), facial weakness, dysarthria (motor disorder causing speech difficulties) and dysphagia (swallowing difficulties) (Dalakas, 2009, Jain, 2021).
Clinical presentation
Patients may describe difficulty with stairs, difficulty in transferring from sitting to standing, legs giving way, being unable to touch the back of their head, e.g. washing or brushing their own hair and difficulty reaching above their head, e.g. taking something out of a high cupboard (Chawla, 2021).
As previously discussed, it is often the proximal muscles that are affected first in acute steroid induced myopathy, and the distal muscles may become involved in severe cases. If this happens, patients may report difficulties with opening jars, manipulating small objects such as buttons or laces and being unable to clear the floor when walking; this is known as a foot drop (Chawla, 2021).
Assessment
A doctor or advanced nurse practitioner in the cancer service, will take full history, including specific questions related to signs of myopathy, when symptoms are described or observed. A full neurological examination should also be carried if indicated from the history or observations (Minetto, 2018).
There may be a role for Electromyography (EMG) testing if the patient has suffered complete paralysis. In this case EMG can be used to identify which muscle groups are affected. There is an alternative view that, EMG may demonstrate normal muscle function as it focuses on type I muscle fibre function opposed to type II muscle function, which are more commonly affected in steroid myopathy (Chawla, 2019).
Certain blood tests may also be useful in testing for myopathy (Nozaki & Prestronk, 2009). Creatinine Kinase (CK testing), which is a measure of the amount of a protein in your blood, may suggest muscle damage / severe inflammation. Elevated Aldolase in the blood can be a sign of muscle or liver damage.
Treatment
The Principal Treatment Centre (main cancer hospital) for the child should be consulted on management. The most effective treatment of steroid-induced myopathy is to reduce the dose or, better still, stop the drug that is causing adverse effects (Chawla, 2011, Dalakas, 2009). However, in the treatment for childhood cancer this is often not possible as sub-optimal dosing could potentially increase risk of relapse (Nielson, et al., 2021). For certain patients, replacing dexamethasone (a fluorinated prepared glucocorticoid) with prednisolone (a non-fluorinated steroid), is sometimes recommended by the paediatric oncologist (Mitchell, et al. 2005, Jennifer, et al. 2010, Eden, et al., 2020).
A holistic management approach should be adopted to optimise the patient’s and family’s quality of life. Timely referrals should be made to other members of the MDT. For example, a referral may be made to the Occupational Therapists for transfer assessments, advice on fatigue management and the provision of adapted equipment to assist with activities of daily living.
The Physiotherapist may be able to provide advice and exercises to maintain joint range of movement, muscle length and strength, gait re-education and or walking aids to assist with mobility and chest physiotherapy techniques to optimise respiratory function.
The Speech and Language Therapists can provide swallowing assessments, communication aids and language techniques to enhance feeding and communication. Depending on the individual patient, there are many other members of the team who may be involved in managing the symptoms of steroid-induced myopathy. If you are unsure of the referral process within your area of work, please ask for advice from the MDT.
Long term
Recovery times vary for steroid-induced myopathy, but usually there is improvement within three-four weeks after the dose is reduced, or stopped, or replacement steroid used (Nozaki & Prestronk, 2009). For most patients, improvement or complete recovery follows ALL treatment, although this is a significant, longer-term side-effect of treatment for a small number of children and young people with cancer (Surmachevska & Vivekandand, 2023, McIntosh & Doughty, 2022).
References
Chawla J (2011) Stepwise approach to myopathy in systemic disease. Frontiers in Neurology 2:49 Available at: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2011.00049/full (Last accessed 6th August 25)
Dalakas, M. C. (2009). Toxic and drug-induced myopathies. Journal of Neurology, Neurosurgery & Psychiatry, 80(8), 832–838. https://doi.org/10.1136/jnnp.2008.168294
Eden T, Pieters R, Richards S; Childhood Acute Lymphoblastic Leukaemia Collaborative Group (CALLCG). (2010) Systematic review of the addition of vincristine plus steroid pulses in maintenance treatment for childhood acute lymphoblastic leukaemia - an individual patient data meta-analysis involving 5,659 children. Br J Haematol. Jun;149(5):722-33. https://doi.org/10.1111/j.1365-2141.2010.08148.x
Jain, K. K. (2021). Drug-Induced Disorders of Cranial Nerves. In Drug-Induced Neurological Disorders (pp. 395–399). Springer. https://doi.org/10.1007/978-3-030-73503-6_24
Jennifer L. McNeer, James B. Nachman (2010) The optimal use of steroids in paediatric acute lymphoblastic leukaemia: no easy answers https://doi.org/10.1111/j.1365-2141.2010.08192.x
McIntosh, P.T., Doughty, C.T. Toxic Myopathies. (2022) Current Treatment Options Neurology 24, 217–239 https://doi.org/10.1007/s11940-022-00718-3
Minetto, M. A., D’Angelo, V., Arvat, E., & Kesari, S. (2018). Diagnostic work-up in steroid myopathy. Endocrine, 60(2), 219–223. https://doi.org/10.1007/s12020-017-1472-5
Mitchell CD, Richards SM, Kinsey SE, Lilleyman J, Vora A, Eden TOB (2005) Benefit of Dexamethasone compared with prednisolone for childhood acute lymphoblastic leukaemia: results of the United Kingdom medical research council ALL 97 randomized trial. British Journal of Haematology 129 pp 734-745 Available at: https://pubmed.ncbi.nlm.nih.gov/15952999/ (Last accessed 8th August 2025)
Nielson, C. M., Bylsma, L.C., Jon P. Fryzek, J.P., Saad H.A, and Crawford, J (2021) Relative Dose Intensity of Chemotherapy and Survival in Patients with Advanced Stage Solid Tumor Cancer: A Systematic Review and META-ANALYSIS Open Access The Oncologist, Volume 26, Issue 9, September 2021, Pages e1609–e1618, https://doi.org/10.1002/onco.13822
Nozaki K, Prestronk A (2009) High aldolase with normal creatine kinase in serum predicts myopathy with perimysial pathology. Journal of Neurology, Neurosurgery and Psychiatry August 80(8) 904-8 Available at https://pubmed.ncbi.nlm.nih.gov/19240048/ (Last accessed 8th August 2025)
Surmachevska.N & Vivekandand T. (2023). Corticosteroid Induced Myopathy. StatPearls Publishing. Available from: https://www.ncbi.nlm.nih.gov/books/NBK557731/ (Last accessed 4th August, 2025)
Page last updated August 2025