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Inclusion Body Myositis (IBM) is a sporadic and progressive muscle disorder & autoimmune myopathy affecting men and women, usually over 45 years old. This condition involves the gradual weakening and wasting of muscles in the legs and arms, leading to difficulty performing everyday tasks like walking, lifting, and gripping. IBM can be sporadic or familial (genetic causes) [1].
Genetic inclusion-body myopathy can be inherited in either a recessive or dominant pattern. Dominant IBM genetic disorders require only one genetic mutation to manifest. Recessive IBM disorders, however, require that both parents pass on a flaw in the same gene before their offspring can show signs of the disease. Unfortunately, there is no cure for Genetic IBM, but researchers hope that gene therapies will eventually cure the disease. For patients with Sporadic inclusion body myositis (sIBM), currently, early diagnosis and proper management are the best options for patients. They can help slow disease progression and improve the quality of life for affected individuals [2].
Recognizing the symptoms of IBM can be challenging, as they typically develop gradually and may mimic other muscle disorders. Some common signs of IBM include:
Inclusion Body Myositis (IBM) can affect the body in multiple ways. Myositis is a general term referring to inflammation of the muscles. In muscle biopsies of patients with IBM, abnormal structures known as inclusion bodies may be observed. These inclusion bodies distinguish this form of myositis from comparable conditions, like multiple sclerosis, Broca’s Aphasia, Progressive Supranuclear palsy (PSP), polymyositis, and dermatomyositis.
For many patients, the exact cause of IBM is unknown and classified as Idiopathic; physicians believe IBM is related to an abnormal immune response that attacks and damages muscle tissue. Identifying the telltale signs of IBM can also be difficult, but specific indicators can aid diagnosis. One of the earliest symptoms is quadriceps weakness, which can cause difficulty rising from a seated position or climbing stairs. Over time, weakness in other muscles, such as the finger flexors, wrist extensors, and ankle dorsiflexion, may also develop. In addition, IBM can cause muscle wasting, particularly in the forearms and quadriceps, and difficulty swallowing or speaking due to weakness in the throat muscles[3].
Other common symptoms of IBM include muscle pain, stiffness, and fatigue. These symptoms can be exacerbated by exercise and may be more noticeable after periods of inactivity. Some people with IBM also experience sensory loss or numbness in their fingers or toes. It is important to note that while these symptoms may point to IBM, they are not definitive, and a proper diagnosis requires a combination of clinical examination, blood tests, and muscle biopsy.
Patients can better understand IBM by examining the factors that contribute to its pathogenesis. IBM is believed to be an autoimmune disorder, meaning the patient’s immune system mistakenly attacks their own cells and tissues. Aside from autoimmune factors, age, and genetics may also play a role in the development of IBM. IBM typically affects individuals older than 45, with a higher prevalence in men than in women. Additionally, some studies have found that specific genetic mutations may increase a person’s risk of developing IBM. However, further research is needed to identify the genetic factors underlying the development of this condition. Understanding the causes of IBM is crucial in developing effective treatments and prevention strategies for this debilitating condition.
To accurately diagnose IBM, your physician may recommend blood tests, biopsies, and imaging studies to assess a patient’s muscle strength, range of motion, and overall physical abilities. One standard test used to diagnose IBM is a muscle or tissue biopsy, in which a tiny sample of muscle tissue is surgically removed and examined under a microscope. This can help determine whether there are abnormal protein deposits or inclusion bodies in muscle tissue, hallmarks of IBM.
Other tests that may be used to diagnose IBM include electromyography (EMG), which measures the electrical activity in your muscles, and magnetic resonance imaging (MRI), which can help identify any muscle inflammation or damage. Blood tests may also rule out other conditions that can cause muscle weakness, such as thyroid disorders or other autoimmune diseases such as ankylosing spondylitis, lupus, rheumatoid arthritis, connective tissue disease, type 1 diabetes, Sjogren’s or Hashimoto’s disease, Using a combination of these tests and evaluations, a primary care doctor can make an accurate diagnosis and develop an effective treatment strategy to manage the negative symptoms and improve patient quality of life.
Once diagnosed with IBM, managing the condition with various treatment options can significantly improve your quality of life. Although there is no cure for genetic IBM, there are ways to slow down the rate of progression of the disease and alleviate symptoms. Currently, some of the most effective strategies combine isolated mesenchymal stem cells, physical therapy, and lifestyle changes to manage IBM.
So far, clinical trials have not shown many clear benefits for any specific drug treatment of inclusion body myositis. For that reason, many experts do not prescribe medications for the inclusion of body myositis except in certain limited situations. Traditional medication options for IBM include:
Other Biological treatments include:
Inclusion Body Myositis exhibits both inflammatory and degenerative features, making it a promising candidate for cellular therapy. Clinical trials for IBM have shown that satellite cell (SC) proliferation is normal for patients with IBM. Typically, their overall capacity for cell differentiation is impaired, leading to muscle failure. In extremely resistant myositis cases, a combination treatment using myeloablative conditioning with cyclophosphamide. Treatment with cyclophosphamide and total-body irradiation, followed by reinfusion of cord tissue stem cells and granulocyte colony-stimulating factors, improved muscle strength, with no trace of myositis on MRI 6 months after treatment. This outcome remained stable for over three years. Other patients with progressive IBM demonstrated significant improvements and sustained remission after modified stem cell treatment without the need for adding toxic treatment requirements for patients with severe, resistant diagnoses.
The ability of stem cells to renew themselves throughout life has proven beneficial for many tissues. However, it’s believed that skeletal muscles constitute the body’s structure and are renewed only a few times under specific conditions. As we age, the body meets increased demands by increasing size (hypertrophy), rather than by producing more cells (hyperplasia). This could be why muscle stem cells can’t renew as much as other stem cells, like those in peripheral blood[4].
Using isolated MSCs, cultured muscle stem cells, and growth factors provides patients with a targeted approach to treating muscle diseases over weeks, with multiple cycles to initiate repair. When muscle stem cells are depleted, the muscle is gradually replaced by fat and connective tissue. In some cases, the Regeneration Center also uses fibro-adipogenic progenitor cells due to their vital role in muscle repair. Isolated progenitor cells and growth factors can activate satellite cells, even though they produce fat and scar tissue. Dealing with scar tissue (fibrosis) is vital to any treatment strategy. From our research, we’ve learned that treatments must begin as early as possible to be effective, particularly in cases with significant fibrosis [5].
Total Number of MSC+ Cell Sessions Needed: For most patients with IBM, we will need multiple Infusions of isolated and expanded mesenchymal cells, which can be cultured from autologous bone marrow (BMMSC) or allogeneic sources (UC-MSC) and Neural Stem cells (MSC–NSC). These stem cells and our proprietary combination of growth factors are combined to enhance the treatment’s therapeutic potential. The growth factors we isolate and culture from MSC Cells are naturally occurring proteins in cells that stimulate cell growth, proliferation, healing, and differentiation, and are combined with stem cells to support brain repair and regeneration. Some of the growth factors we isolate for IBM patients include Vascular Endothelial Growth Factor (VEGF), Fibroblast Growth Factors (FGFs), Insulin-like Growth Factor 1 (IGF-1), Glial Cell Line-Derived Neurotrophic Factor (GDNF), Brain-Derived Neurotrophic Factor (BDNF), Nerve Growth Factor (NGF), and Epidermal Growth Factor (EGF).
Delivery Methods for MSC+ and Neural Stem Cells: Delivery and cell infusion methods will vary based on patient needs. Stem cells can be administered using a combination of Intravenous infusions, stereotactic-guided delivery, inhalation therapy via micro-nebulized mesenchymal cells, Intrathecal infusions, and fluoroscopy-guided cell delivery (in a hospital setting only). All intrathecal injections at The Regeneration Center are done by a board-certified neurosurgeon and are needed to bypass the blood-brain barrier.
Rehabilitation Post-Treatment: Physical Rehabilitation in Bangkok is optional but strongly recommended. Complete physical rehab services post-therapy can be provided upon request for 2-3 hours per day and up to 5 days per week.
Total Treatment Time Required: Approximately two weeks (depending on the type and severity of the condition). Medical and travel visas for extended hotel or apartment accommodations for the patient and family can also be provided upon request.
The cost of treatment for inclusion body myositis varies with disease severity. Our medical team will need to evaluate the patients using the current medical records. Evaluations can be conducted in person or online (by submitting documents online). After review, a detailed treatment plan will be provided, including specifics such as the total number of nights required and the total medical costs for the treatment of connective tissue disease with stem cells. Please prepare all current medical records and contact us today to begin the evaluation process.
[1] ^Naddaf E, Barohn RJ, Dimachkie MM. Inclusion Body Myositis: Update on Pathogenesis and Treatment. Neurotherapeutics. 2018 Oct;15(4):995-1005. doi: 10.1007/s13311-018-0658-8. PMID: 30136253; PMCID: PMC6277289.
[2] ^ Sanmaneechai O, Swenson A, Gerke AK, Moore SA, Shy ME. Inclusion body myositis and sarcoid myopathy: coincidental occurrence or associated diseases. Neuromuscul Disord. 2015 Apr;25(4):297-300. doi: 10.1016/j.nmd.2014.12.005. Epub 2014 Dec 19. PMID: 25599912.
[3] ^ Schmidt K, Schmidt J. Inclusion body myositis: advancements in diagnosis, pathomechanisms, and treatment. Curr Opin Rheumatol. 2017 Nov;29(6):632-638. doi: 10.1097/BOR.0000000000000436. PMID: 28832349.
[4] ^ Lloyd TE. Novel therapeutic approaches for inclusion body myositis. Curr Opin Rheumatol. 2010 Nov;22(6):658-64. doi: 10.1097/BOR.0b013e32833f0f4a. PMID: 20827206; PMCID: PMC4365473.
[5] ^ Tedesco FS, Dellavalle A, Diaz-Manera J, Messina G, Cossu G. Repairing skeletal muscle: regenerative potential of skeletal muscle stem cells. J Clin Invest. 2010 Jan;120(1):11-9. doi: 10.1172/JCI40373. PMID: 20051632; PMCID: PMC2798695.
