Materiały źródłowe

• #1

  https://umiamihealth.org/en/treatments-and-services/arthritis-(rheumatology)-/myositis

  Myositis, which means muscle swelling, is a group of chronic diseases that causes muscle weakness that’s often accompanied by pain. It can be caused by an injury, infection, certain medications, or an autoimmune disease like rheumatoid arthritis. The types of myositis that affect adults include: […] In addition to muscle weakness and pain, myositis symptoms can include fatigue, difficulty moving your arms and legs, and swallowing or breathing difficulties. The combination of muscle weakness and difficulty moving can increase your risk of falling. […] At University of Miami Health System, our rheumatologists have advanced experience treating all types of myositis. With locations throughout South Florida, you find expert care for myositis nearby. […] Physical therapy can help strengthen the muscles affected by myositis and improve your flexibility. A physical therapist can design a customized stretching and exercise program to prevent muscle wasting and improve the range of motion in your joints and muscles.

• #1 Myositis Causes, Symptoms, and Treatments | UPMC

  https://www.upmc.com/services/rheumatology/conditions/myositis

  Myositis can affect how you walk, move your arms and hands, swallow, and breathe. […] Treatments help to prevent muscle loss and heart, lung, and other problems myositis can cause. […] Myositis symptoms and complications include: […] PT and exercise can prevent muscle loss and help you function in your daily life. […] Along with medicine, a healthy diet can help fight inflammation in the body. […] No, there’s no cure for myositis, but early treatment can prevent further muscle weakness. […] Although myositis is serious, doctors can treat this disease. People with myositis can live full, healthy lives.

• #1 Our specialized team with experience in different types of idiopathic inflammatory myopathies provides comprehensive, personalized myositis care. – Rheumatology | UCLA Health

  https://www.uclahealth.org/medical-services/rheumatology/inflammatory-myositis

  Our specialized team with experience in different types of idiopathic inflammatory myopathies provides comprehensive, personalized myositis care. […] The goal of the UCLA Myositis Program is to provide the highest level of individualized, tailored care to patients with myositis. Patients with suspected or diagnosed myositis, their families, and doctors can all benefit from our program, which includes care by a team of experts in these very rare but serious diseases. […] Early recognition and aggressive, comprehensive care is key to achieving disease control and limiting disease complications. […] Our expert team includes specialists from many different fields of medicine to meet the needs of patients with myositis who may have systemic involvement of different organ systems beyond the muscle tissue.

• #1 Strong Argument: Recent Developments in Myositis Diagnosis & Care – The Rheumatologist

  https://www.the-rheumatologist.org/article/strong-argument-recent-developments-in-myositis-diagnosis-care/

  The idiopathic inflammatory myopathies (IIM) encompass eight categories: 1) dermatomyositis (DM) in adults, 2) juvenile dermatomyositis, 3) amyopathic DM, 4) cancer-associated DM, 5) polymyositis, 6) immune-mediated necrotizing myopathy, 7) inclusion body myositis, and 8) overlap myositis. […] In recent years, scientists and clinicians have learned a great deal about autoantibodies occurring in idiopathic inflammatory myopathies (IIMs). […] These new discoveries have reshaped our understanding of distinct clinical phenotypes in IIMs. […] Moving forward, these autoantibodies will.

• #1

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=uf8931

  Polymyositis and dermatomyositis are problems with your immune system. Polymyositis attacks your muscles. Dermatomyositis attacks your skin and muscles. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It’s also a good idea to know your test results and keep a list of the medicines you take. […] Physiotherapy can help keep your muscles strong and flexible. You also may get exercises from a doctor who specializes in diseases of the joints. […] Talk to your doctor about an exercise program. Activity is important for your muscles, heart, and lungs. If your doctor says it is okay, you may be able to walk, swim, cycle, or take exercise classes. You also may be able to lift weights.

• #1 Treatment and Disease Management – The Myositis Association

  https://www.myositis.org/about-myositis/treatment-disease-management/

  Myositis diseases vary widely from one patient to another, so no one treatment will work for everyone. […] There are a number of medications available that may be used individually or in combination to treat most forms of the disease. […] Because myositis and its treatments are so variable, it is also extremely important that you communicate well with your physician about your treatment, its effectiveness, and any side effects you may experience. […] Keep in mind that medications are only one step in treating myositis diseases. There are many other therapies that patients find helpful and are recommended to assist you live life to the fullest, despite the challenges of chronic disease. […] While polymyositis, dermatomyositis, necrotizing myopathy, and overlap disorders all, to varying degrees, are responsive to immune suppression and other therapies, inclusion body myositis still has no effective treatment. […] Nevertheless, research continues to better understand IBM, and a number of compounds are currently being studied as potential treatments for inclusion body myositis.

• #1 Simplifying care for a complex disease like myositis | Ohio State Medical Center

  https://wexnermedical.osu.edu/departments/innovations/rheumatology/simplifying-care-for-a-complex-disease-like-myositis

  In our clinic, a patient is seen by both a rheumatologist and a neurologist from the very beginning, says Myositis Clinic co-director and Ohio State Wexner Medical Center rheumatologist Jisna Paul, MBBS, who leads the Myositis Clinic with neurologist Bakri Elsheikh, MBBS. This allows us to diagnose and address every aspect of the disease more quickly. […] Depending on the patients type of myositis, Ohio States dedicated clinic is designed to provide seamless access to care. Treatment is available for various idiopathic inflammatory myopathies, including polymyositis; dermatomyositis, including antisynthetase syndromes; overlap myositis; autoimmune necrotizing myositis; and inclusion body myositis. […] We have state-of-the-art options for these patients, Dr. Paul says. That includes a full range of oral/IV medications, an on-site infusion center and on-site specialty pharmacists who can help with prior authorization and dosing, which is important because some of our medications are prescribed for off-label use and can be quite expensive without coverage.

• #1 Myositis | University of Michigan Health

  https://www.uofmhealth.org/conditions-treatments/rheumatology/myositis

  Myositis is an autoimmune muscle disease, where the immune system attacks its own tissue, causing inflammation in the muscles. This weakens the muscles over time and can cause pain. This chronic condition typically impacts the neck, shoulders, hips and back. […] A multidisciplinary team of rheumatologists, neurologists, pulmonologists, pathologists, radiologists, nurses, physical therapists, registered dieticians and social workers collaborate on each case to provide patients with the most comprehensive care available. […] Our patients will receive the latest treatments and clinical trials to manage the disease and encourage it into remission. Currently, there are no FDA-approved therapies for any form of myositis. […] Available treatments include: Exercise and physical therapy: Moving the muscles reduces inflammation and fatigue while increasing stamina and muscle mass. […] Nutrition: Eating foods on an anti-inflammatory plan, sometimes called the Mediterranean diet, may minimize flare-ups.

• #1 Northwestern Medicine Myositis Clinic | Northwestern Medicine

  https://www.nm.org/conditions-and-care-areas/rheumatology/myositis-clinic

  The Northwestern Medicine Myositis Clinic uses a team approach to provide comprehensive myositis care that fits your needs. […] Myositis is a rare and complex condition that causes chronic inflammation in your muscles. This causes muscle fatigue and weakness. Our team strives to provide compassionate care that puts you at the center of your care team. […] Our multidisciplinary team provides personalized care and expertise in treating all types of myositis. […] Collaboration between clinicians from different specialties helps treat myositis effectively. Our clinic has experts in many different areas of care, including those with dedicated training in: […] At your first visit, we will talk with you to better understand your medical history and symptoms. […] You can expect to: See an expert that specializes in treating and diagnosing myositis. […] Treatments include: Anti-Inflammatory Medications, Corticosteroids, Immunosuppressant Medications, Lifestyle Management Changes, Physical Therapy.

• #1 Myopathy and Myositis | Henry Ford Health – Detroit, MI

  https://www.henryford.com/services/neuromuscular-disorders/neuromuscular-diseases-we-treat/myopathy-and-myositis

  Myopathy and myositis are rare muscle diseases that cause weakness, impacting your ability to perform basic tasks. Expert care from Henry Ford Health optimizes your muscle function and quality of life. […] We care for all types of myositis and myopathic disease, including complex disorders that are challenging to treat. […] You receive services from neurologists with advanced training in neuromuscular conditions like myopathy and myositis. Our care always reflects the latest advances that lead to excellent results. […] Myopathic disease and myositis evaluations start with a detailed physical and neurologic evaluation. […] Myopathy and myositis have no cure. But treatment can ease their impact on your life. The therapies that are best for you depend on your diagnosis. […] If you are a patient looking for a second opinion about your diagnosis or treatment plan, were here to help. Myopathy and myositis experts review your case and may run additional tests to confirm the diagnosis. We also provide personalized treatment recommendations.

• #1 Juvenile Myositis Center

  https://www.cincinnatichildrens.org/service/r/rheumatology/services/juvenile-myositis

  Children with myositis (inflammation of the muscles) can now receive specialized care through the Juvenile Myositis Center at Cincinnati Children’s. As a Cure JM site, Cincinnati Childrens collaborates with the countrys largest foundation supporting myositis patients. Our multidisciplinary team offers expert guidance in the evaluation, diagnosis and management of patients with myositis. […] The Myositis Clinic provides multidisciplinary, specialized care for your childs unique needs. Treatments and services include: […] Patients may come to the Myositis Clinic through a referral from another physician or directly through Cincinnati Childrens Division of Rheumatology. […] Once in the clinic, patients will receive an expert clinical examination by pediatric rheumatology providers. Other tests could include lab testing, magnetic resonance imaging (MRI) or muscle biopsy, and an evaluation by a physical therapist to assess physical functioning and identify exercises to improve strength. […] Patients return to the clinic for regular monitoring to understand the state of their condition as well as physical therapy or other treatment.

• #1 Myositis | SMC Physicians, New Jersey

  https://smc-physicians.com/service/myositis-nj/

  Myositis involves chronic inflammation of the muscles, leading to weakness, pain, and reduced mobility, and often occurs together with other symptoms. […] Treatment for myositis typically involves a combination of drug treatment, physical therapy, and lifestyle modifications. Medications may include corticosteroids, such as prednisone, or immunosuppressant drugs to reduce inflammation and manage symptoms. […] With proper medical care and lifestyle modifications, symptoms of myositis can often be managed, and quality of life improved. […] While there is no known cure for myositis, with proper treatment and management, symptoms can often be controlled and quality of life improved. In most cases, treatment can put the condition into remission.

• #1 Myositis | Rheumatology Services | University Hospitals | Cleveland, Ohio | University Hospitals

  https://www.uhhospitals.org/services/rheumatology-services/conditions-and-treatments/myositis

  Idiopathic inflammatory myopathies (IIM), commonly known as myositis, are a group of chronic autoimmune diseases in which the immune system attacks the bodys own tissues and muscles, which causes inflammation, muscle weakness, breathing problems, arthritis and, rarely, muscle pain. Over time and without treatment, symptoms may get progressively worse and lead to significant disability. […] There is no cure for myositis, but there are a variety of treatments to manage symptoms, prevent disease progression and improve quality of life. […] The primary goal of treatment is to reduce inflammation, prevent disease progression and improve quality of life. Your team may include rheumatologists, pulmonologists, neurologists, dermatologists and physical, speech and occupational therapists. […] Treatment for myositis may include corticosteroids and immunosuppressant medications such as methotrexate, azathioprine, mycophenolate mofetil, tacrolimus, rituximab or cyclophosphamide. […] Physical or occupational therapy to strengthen muscles and improve mobility. […] While receiving medical therapy, several lifestyle modifications will also be recommended to help you restore and maintain muscle strength, range of motion and overall health.

• #1 Myositis | UTHealth Neurosciences

  https://med.uth.edu/neurosciences/myositis/

  Steroids, taken either by tablets or injections, are the most typical treatment for myositis. They often can reduce inflammation quickly. […] Your doctor will discuss potential side effects with you, as well as medicine you should take with the steroids to offset potential bone loss. […] UTHealth Neurosciences brings together a multidisciplinary team of board-certified, fellowship-trained neurosurgeons, neurologists, researchers, and pain management specialists to help provide relief for even the most complex problems. Your team will share insights, leading to better treatment decisions and outcomes. You will receive expert care, excellent communication, and genuine compassion. […] We first investigate nonsurgical treatment options, including medical management, pain management, physical therapy, rehabilitation, and watchful waiting. When surgery is needed, our neurosurgeons routinely employ innovative minimally invasive techniques. Throughout the treatment process, we will work closely with the doctor who referred you to ensure a smooth transition back to your regular care. While you are with us, you will receive expert care, excellent communication, and genuine compassion.

• #1 Expert Care Improves Rare Myositis|The University of Kansas Health System

  https://www.kansashealthsystem.com/news-room/patient-stories/2019/11/myositis-treatment

  Myositis is an autoimmune condition marked by severe muscle inflammation. The disease can take various forms, but common features are weakness of the proximal muscles, which are those situated near the torso, such as hips and shoulders. Patients who have myositis also often develop difficulty swallowing. […] The typical treatment is steroids, but „we treat patients with 2-3 different medications if they are profoundly weak,” Dr. Dimachkie notes. For Gene, this meant about a week in the hospital receiving intravenous immunoglobulin (IVIG) in addition to the oral steroid prednisone. […] IVIG is used for a number of neurological and autoimmune disorders. Immunoglobulin is present in blood plasma and contains antibodies that help strengthen the immune system. Because myositis is an autoimmune disease in which the body’s immune system begins attacking muscle, IVIG can be helpful.

• #1 Optimizing Myositis Care: The Role of Biologics – Cure JM Foundation

  https://www.curejm.org/optimizingmyositiscaretheroleofbiologics/

  Biologics are a therapies that derived from living cells or through biological processes. They are a promising new class of drugs used to treat myositis. Unlike traditional medications that suppress the entire immune system, biologics target specific parts of the immune system involved in the inflammatory process. […] Biologics are not typically a first-line treatment for myositis. They are typically used only after other medications, such as corticosteroids and methotrexate, have not been effective. […] Types of biologics used in myositis: B-cell depletion therapy: This type of biologic targets B cells, which are immune system cells that produce antibodies. Rituximab (Rituxan) is a B-cell depletion therapy that has been shown to be effective in some patients with myositis. […] TNF-alpha inhibitors: These drugs block the action of tumor necrosis factor-alpha (TNF-alpha), a protein that plays a key role in inflammation. TNF-alpha inhibitors, such as etanercept (Enbrel), adalimumab (Humira), and infliximab (Remicade), are not currently FDA-approved for myositis, but they have shown promise in some studies.

• #1 Current Treatment for Myositis

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6299051/

  The purpose of this review was to give an update on treatment modalities for patients with idiopathic inflammatory myopathies, or shortly myositis, excluding the subgroup inclusion body myositis, based on a literature survey on therapies used in myositis. […] Glucocorticoid (GC) in high doses is still the first-line treatment of patients with myositis. There is a general recommendation to combine GCs with another immunosuppressive agent in the early phase of disease to better control disease activity and possibly to reduce the risk for GC-related side effects. Furthermore, combining pharmacological treatment with individualized and supervised exercise can be recommended based on evidence. […] Immunosuppressive treatment in combination with exercise is recommended for patients with myositis to reduce disease activity and improve muscle performance.

• #1 Exercise and Physical Therapy – The Myositis Association

  https://www.myositis.org/about-myositis/treatment-disease-management/exercise-physical-therapy/

  Exercise and physical therapy are important parts of standard myositis treatment plans. […] Indeed, exercise is currently the only treatment recommendation for patients with inclusion body myositis. […] Each person must find the proper exercise program that is right for them. Exercise should be designed to strengthen muscles and muscle groups that are not affected by your disease process, while protecting the muscles that are affected. […] If your physical or occupational therapist is unfamiliar with myositis and the exercise needs of myositis patients, show them the information on this page and other areas of The Myositis Associations website. […] Thats why exercise is so important. Exercise keeps weak muscles from atrophying and helps the body compensate for weakness by strengthening the surrounding musculature.

• #1 Myositis support for members | HealthPartners

  https://www.healthpartners.com/insurance/members/health-programs/myositis/

  You rely on your muscles a lot. So when theyre not working the way you expect, it can be concerning. If youre experiencing chronic (long-term) muscle weakness, especially in your larger muscles, you may have myositis. […] If youre diagnosed, you and your care team can work together on a treatment plan for improving your physical fitness and enhancing your quality of life. […] There isnt a treatment specifically for myositis. But active management of the condition can help you enjoy life to the fullest. A common goal of myositis treatment is remission. That means little or no muscle inflammation. […] Your treatment may include: Prescription medicines Steroids, antibiotics and other medicines can help reduce inflammation. They may also improve muscle strength. […] Regular exercise Regular, moderate-intensity exercise can help reduce inflammation and fatigue, increase stamina, and build muscle. Make sure you check with your doctor before beginning any exercise routine.

• #1 Current Treatment for Myositis

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6299051/

  Despite these proposals and several ongoing trials, glucocorticoids (GCs) remain the first-line therapy in treatment of IIM, but the use of immunosuppressive drugs as adjunctive therapy is increasing in the early phases of the disease, both for adjunctive efficacy and for their steroid sparing effect. […] In each patient with a recent-onset IIM, the prescription of an immunosuppressive agent should be considered from the first phase of treatment, as early treatment is associated with a better outcome. […] Based on accumulated data on the beneficial effect of exercise in patients with PM and DM, all patients with IIM can be recommended to start physical training as soon as possible after start of immunosuppressive treatment. To begin with, an individualized training program under the supervision of a physiotherapist is recommended. Exercise may be performed at the hospital but several studies suggest a combination of home-based training program in combination to hospital-based exercise. […] The beneficial effects of exercise in patients with PM and DM are more evident with medium- and long-term durations. Exercise load and intensity of the treatment should be individually adapted to disease activity, GC dose, and patients characteristics.

• #1 Understanding Myositis: Treatments and Self-Care Tips | Los Angeles | Pacific Arthritis Care Center

  https://pacificarthritis.com/blog/understanding-myositis-treatments-and-self-care-tips/

  Occupational therapists help patients adapt their daily activities and use assistive devices to maintain independence and quality of life. […] Living with myositis requires proactive self-care and lifestyle adjustments. Here are some essential tips to help manage the condition: […] At Pacific Arthritis, our team of expert rheumatologists is dedicated to providing comprehensive care for patients with myositis. We offer personalized treatment plans tailored to each patient’s unique needs, incorporating the latest advancements in rheumatology. Our multidisciplinary approach includes medication management, physical and occupational therapy, dietary counseling, and ongoing support to help patients achieve the best possible outcomes.

• #1 Myositis: Diagnosis & Treatment | Allegheny Health Network

  https://www.ahn.org/services/neuroscience/conditions/neuromuscular-disorders-care/myositis

  Our specially trained occupational therapists help you relearn how to complete daily activities that have become difficult, enhancing your independence at home or work. […] Dedicated speech therapists help you address symptoms that make it difficult to talk or swallow. […] Devices such as braces support you in everyday movements and help prevent injuries.

• #1 Self-Care Task Modification When Living With Myositis: Pt. 1

  https://www.hss.edu/conditions_self-care-task-modification-myositis-I.asp

  At our March meeting, we welcomed Bethel Marcus, OTR/L, CHT, an Occupational Therapist and Certified Hand Therapist in the HSS Hand Therapy Department. Ms. Marcus has been practicing in this field for 11 years and has experience working with myositis patients. In Part I of her presentation, she focused on task modification for self-care activities of daily living. Ms. Marcus shared ideas on modifying the way activities are accomplished in order to decrease the amount of pain, fatigue, and inflammation that often occur afterwards. […] Part I of this article focuses on modification equipment that will help myositis patients perform daily tasks and functions such as bathing, sleeping, dressing, and sitting. […] Ms. Marcus highly recommended that those with myositis work with a therapist before purchasing the following equipment to make sure they purchase the correct product for their needs.

• #1 Treatment of Myositis – Johns Hopkins Myositis Center

  https://www.hopkinsmyositis.org/unique/treatment-myositis/

  As of now, there is no cure for myositis. However, management of the disease is critical in order to reduce inflammation caused by myositis and to prevent muscle weakness from progressing. […] Your doctor will probably recommend a course of medical therapy using the following 2 classes of drugs: […] Exercise. After drug treatment takes effect, a program of regular stretching exercises prescribed by your doctor can help maintain range of motion in weakened arms and legs. Physical therapy may also help prevent permanent muscle shortening. […] Rest. Getting enough rest is an important component of managing myositis. Take frequent breaks during the day and limit your activity. […] Nutrition. What you eat can affect your overall health. At the Myositis Center, a trained nutritionist is on hand to help design a diet thats right for you and your lifestyle. […] Reduction of Stress. It is imperative that myositis patients find outlets for the daily stress that most of us have in our lives. To that end, your doctor may suggest exercise as a form of relaxation, like yoga, or biofeedback exercises.

• #1 Patient-centred standards of care for adults with myositis

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6383593/

  The idiopathic inflammatory myopathies (IIM, myositis) are a heterogeneous group of chronic autoimmune disorders causing considerable physical and mental health impact. There is a lack of formalised guidance defining best practice for the management of myositis, contributing to inconsistent care provision and some patients feeling isolated and unsupported. […] To address these issues, we evaluated the clinical services available to adults with myositis in the UK. We then created patient-centred standards of care using a structured process involving patients, their relatives and caregivers, physicians and allied healthcare professionals. […] These patient-centred standards of care for adults with myositis provide a benchmark for the evaluation of local practice. Their implementation will promote consistent good practice across care providers and empower patients when seeking access to local services.

• #1 Updates in Myositis Care: A review of Evidence-Based Practices and Emerging Therapies – IgNS – Advancing Ig Therapy Practice

  https://ig-ns.org/lessons/webinar-updates-in-myositis-care/

  Target Audience This activity is intended for nurses, pharmacists, and physicians who treat patients with myositis. […] Nursing Continuing Professional Development The maximum number of hours awarded for this Nursing Continuing Professional Development activity is 0.75 contact hours. […] Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development.

• #1 Infectious Myositis Treatment & Management: Medical Care, Surgical Care, Consultations

  https://emedicine.medscape.com/article/1168167-treatment

  All medical care should be provided in conjunction with an infectious disease specialist and the primary care physician. […] HIV polymyositis: Corticosteroids remain the mainstay of treatment of polymyositis. […] Treatment comprises bed rest, intravenous fluids, and symptomatic management with antipyretics and analgesics. […] Promptly administer systemic antibiotics. This could eliminate the need for surgical drainage in selected cases. […] Consultations with a neurologist and/or infectious disease specialist may prove useful. […] Prevent trichinosis and cysticercosis by adequately processing pork.

• #1 Myositis Caregivers and Care Partners – Myositis Support and Understanding

  https://understandingmyositis.org/caregivers/

  Caregivers and Care Partners play an important and ever-evolving role in the lives of those living with myositis. […] Our myositis caregivers allow us, as patients, to live our best possible lives. […] Knowledge is Power. Learning more about myositis is a great first step in your role as a caregiver. […] There are many common questions that arise for caregivers and care partners. One common question is, How do I explain myositis to others? […] Caregivers for those with myositis often feel very lonely. But, you are NOT alone! We have several caregiver support options to help you in this difficult role. […] Caregivers do amazing work caring for their loved ones. Recognize the important job you are doing and realize how valuable you are. […] Educating yourself about the form of Myositis your loved one has will help you be better prepared for the future.

• #1 Myositis support for members | HealthPartners

  https://www.healthpartners.com/insurance/members/health-programs/myositis/

  Physical therapy Physical therapists can help design stretches and workout regimens. Your doctor may suggest physical therapy, depending on your symptoms. […] Get customized resources, guidance and support from a nurse experienced with myositis confidentially and at no extra cost. Well work with you and your care team to create a plan that helps treat your symptoms and empowers you to improve your well-being.

• #1 Myositis Caregivers and Care Partners – Myositis Support and Understanding

  https://understandingmyositis.org/caregivers/

  Stress is one thing you will definitely experience as a caregiver. […] Caregivers are especially vulnerable to depression it is the most common healthcare condition reported by family caregivers. […] Caregivers often do not get adequate personal time. It is important to take care of yourself both physically and emotionally. […] If your partner requires lifting to and from bed and/or a wheelchair, learn the proper techniques so you dont hurt yourself or your loved one. […] Choose to take charge of your life, and dont let your loved ones illness or disability always take center stage. […] Myositis caregivers and care partners each have unique experiences to share that can help others going through similar situations.

• #1 Caregiver and Care Partner Resources – Myositis Support and Understanding

  https://understandingmyositis.org/caregiver-resources/

  Empowering the Myositis Community […] Care partners are the rock and foundation for any patient living with myositis. Without you, they may feel alone, isolated, and unsafe, and may not be able to do the things they enjoy. […] Care partners are instrumental in helping to manage their loved ones health by going to doctor visits and asking questions, taking notes, and explaining things that the patient may forget. Care partners are an integral part of the healthcare team and we work to provide support and resources to help you succeed and stay well. […] Myositis caregivers and care partners each have unique experiences to share that can help educate and inform others going through similar experiences. […] Myositis Support and Understandings Caregiver, Family and Friends Facebook support group is a place for caregivers and all of those involved in a Myositis patients life to come together and learn more about Myositis and get the support you need and deserve.

• #1 Sporadic Inclusion Body Myositis Treatment & Management: Medical Care, Surgical Care, Consultations

  https://emedicine.medscape.com/article/1172746-treatment

  No definitive treatment has been proven effective for sporadic inclusion body myositis (s-IBM). […] Routine follow-up visits at intervals contingent upon the progression and severity of involvement are indicated to assess the patient’s strength, tolerance of exertion, and compromise in occupation or activities of daily living. Hicks has outlined a strategy for care of patients with inflammatory myopathies, including s-IBM. […] Depending on degree of weakness, physical therapy or physiatry consultation may be useful in optimizing the patient’s abilities. […] If dysphagia occurs, referral to a speech therapist would be of benefit for instruction regarding swallowing techniques and aspiration precautions. […] No dietary modification is required in most cases of sporadic inclusion body myositis (s-IBM) unless symptomatic dysphagia occurs.

• #1 Myositis – Rheumatology for Primary Care

  https://rheumforprimarycare.org/myositis/

  Proximal muscle WEAKNESS pain […] Physical therapy and rehabilitation are very important to continue long term. […] Labs to follow: CK/aldolase, CRP, Live enzymes. […] IBM and IMNM tend to have more difficult response to treatment. […] Symmetrical, proximal muscle weakness = hallmark of inflammatory myositis. If pain weakness: consider alternate etiology (rhabdo, endocrinopathy). […] Classic rash distributions (Gottrons papules over dorsum knuckles, heliotrope rash, etc.) with muscle weakness should prompt workup for dermatomyositis. […] Vast majority of JDM cases have skin involvement. […] Inclusion body myositis: Most common myositis of elderly. […] Remember distal and proximal muscle weakness with neuropathic features. […] Dermatomyositis and antibodies to NXP and TIF1 gamma in adults highly associated with malignancy, but dermatomyositis rarely associated with cancer in children.

• #1

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=uf8931

  Call your doctor or nurse advice line now or seek immediate medical care if: Your muscle pain or weakness suddenly gets worse. […] Watch closely for changes in your health, and be sure to contact your doctor or nurse advice line if: You have side effects from the medicines that help control the immune system.

• #1 UF Health launches new center to treat myositis and lung disease – UF Health

  https://ufhealth.org/news/2023/uf-health-launches-new-center-to-treat-myositis-and-lung-disease

  Faye Pais, M.D., announced the launch of the Myositis Interstitial Lung Disease Center at UF Health during a recent meeting of the Myositis Patient Support Group. […] As a lung disease specialist at University of Florida Health, Faye Pais, M.D., has seen the drastic effects myositis has on patients. Inflammation is widespread and can affect any part of the body. In at least 70% of cases, the disease attacks the lungs. Left unchecked, that inflammation and scarring can lead to irreversible lung damage and death. […] A dedicated myositis center brings many advantages for patients, said Pais, a pulmonary disease and critical care specialist. Doctors can monitor patients closely for antibodies that are the hallmark of myositis. […] Patients should see doctors who live and breathe that persons particular illness.

• #1 Myositis Program – UChicago Medicine

  https://www.uchicagomedicine.org/conditions-services/rheumatology/myositis-program

  The Myositis Program at the University of Chicago Medicine is the only program in Illinois completely devoted to the care of patients with myositis. […] We use a multidisciplinary approach to diagnose and treat myositis. This involves bringing in many kinds of specialists to study a patients situation and create the best plan for care. Our team often includes a rheumatologist who specializes in myositis, dermatologist, neurologist, pulmonologist, and physical therapist. […] Once we arrive at a diagnosis and classify the type of myositis, we develop a comprehensive medical plan to help you control the disease and improve your quality of life. […] This may include: Immunosuppression medications such as corticosteroids (prednisone), methotrexate, mycophenolate mofetil, azathioprine, tacrolimus, immunoglobulins and rituximab; Aggressive physical therapy to regain muscle function for those who are extremely disabled; Guidance on sun protection for those with skin rashes sensitive to sunlight; Oxygen and respiratory therapy for those with severe lung diseases.

• #1 Patient-centred standards of care for adults with myositis | BMC Rheumatology | Full Text

  https://bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-017-0002-7

  The idiopathic inflammatory myopathies (IIM, myositis) are a heterogeneous group of chronic autoimmune disorders causing considerable physical and mental health impact. […] To address these issues, we evaluated the clinical services available to adults with myositis in the UK. We then created patient-centred standards of care using a structured process involving patients, their relatives and caregivers, physicians and allied healthcare professionals. […] These patient-centred standards of care for adults with myositis provide a benchmark for the evaluation of local practice. Their implementation will promote consistent good practice across care providers and empower patients when seeking access to local services. […] Our patient-centred approach has helped to create a set of unique standards of care for adults with myositis. By specifically addressing deficiencies in care highlighted by patients and then using an iterative process that considered feedback from patients, relatives, caregivers and healthcare professionals, we have produced standards of care tailored to the individual healthcare needs of patients with myositis.

• #2 Myositis: Types, Symptoms, Causes and Treatment

  https://www.carehospitals.com/diseases-conditions/myositis

  Myositis is a group of rare musculoskeletal conditions that cause inflammation in the muscles, leading to weakness, pain, and fatigue. […] Myositis is an autoimmune disorder where the body’s immune system mistakenly attacks healthy muscle tissue. […] While there is no cure for myositis, various treatment modalities can manage symptoms and improve quality of life. These include: Medication: Corticosteroids are often the first-line myositis treatment. These drugs reduce inflammation and ease muscle pain. […] Individuals should visit a doctor immediately if they experience new muscle weakness, pain, or other symptoms that persist over a few days. […] Regular Exercise and Physical Therapy: Engaging in physical activity helps keep muscles strong, prevents atrophy, and improves quality of life.

• #2 Treatment of Myositis – Johns Hopkins Myositis Center

  https://www.hopkinsmyositis.org/unique/treatment-myositis/

  As of now, there is no cure for myositis. However, management of the disease is critical in order to reduce inflammation caused by myositis and to prevent muscle weakness from progressing. […] Your doctor will probably recommend a course of medical therapy using the following 2 classes of drugs: […] Exercise. After drug treatment takes effect, a program of regular stretching exercises prescribed by your doctor can help maintain range of motion in weakened arms and legs. Physical therapy may also help prevent permanent muscle shortening. […] Rest. Getting enough rest is an important component of managing myositis. Take frequent breaks during the day and limit your activity. […] Nutrition. What you eat can affect your overall health. At the Myositis Center, a trained nutritionist is on hand to help design a diet thats right for you and your lifestyle. […] Reduction of Stress. It is imperative that myositis patients find outlets for the daily stress that most of us have in our lives. To that end, your doctor may suggest exercise as a form of relaxation, like yoga, or biofeedback exercises.

• #2 Myositis Services | UPMC Rheumatology

  https://www.upmc.com/services/rheumatology/services/myositis

  Myositis is a group of rare diseases that cause muscle weakness. But the myositis experts at UPMC are here to help. […] When you come to our centers, we commit to giving you the best myositis care. We’ll bring in other experts who focus on skin, lung, and heart issues when needed. […] If you live close to one of our centers, we give complete myositis care. […] We offer both in-person and virtual visits to make it easy for you. […] Treatments for myositis. We prescribe oral and injectable drugs and connect you to physical therapists with special knowledge of myositis. […] Our wealth of knowledge. For more than 30 years, our doctors have worked to help the health community understand myositis. […] Our research. We often have five or more myositis clinical trials at any time. […] Our insights. We also have compiled one of the largest registries of people with myositis in the U.S. […] People can ask their doctor for a referral to our centers or book an appointment on their own.

• #2 Myositis Program – UChicago Medicine

  https://www.uchicagomedicine.org/conditions-services/rheumatology/myositis-program

  The Myositis Program at the University of Chicago Medicine is the only program in Illinois completely devoted to the care of patients with myositis. […] We use a multidisciplinary approach to diagnose and treat myositis. This involves bringing in many kinds of specialists to study a patients situation and create the best plan for care. Our team often includes a rheumatologist who specializes in myositis, dermatologist, neurologist, pulmonologist, and physical therapist. […] Once we arrive at a diagnosis and classify the type of myositis, we develop a comprehensive medical plan to help you control the disease and improve your quality of life. […] This may include: Immunosuppression medications such as corticosteroids (prednisone), methotrexate, mycophenolate mofetil, azathioprine, tacrolimus, immunoglobulins and rituximab; Aggressive physical therapy to regain muscle function for those who are extremely disabled; Guidance on sun protection for those with skin rashes sensitive to sunlight; Oxygen and respiratory therapy for those with severe lung diseases.

• #2 Myositis | University of Michigan Health

  https://www.uofmhealth.org/conditions-treatments/rheumatology/myositis

  Myositis is an autoimmune muscle disease, where the immune system attacks its own tissue, causing inflammation in the muscles. This weakens the muscles over time and can cause pain. This chronic condition typically impacts the neck, shoulders, hips and back. […] A multidisciplinary team of rheumatologists, neurologists, pulmonologists, pathologists, radiologists, nurses, physical therapists, registered dieticians and social workers collaborate on each case to provide patients with the most comprehensive care available. […] Our patients will receive the latest treatments and clinical trials to manage the disease and encourage it into remission. Currently, there are no FDA-approved therapies for any form of myositis. […] Available treatments include: Exercise and physical therapy: Moving the muscles reduces inflammation and fatigue while increasing stamina and muscle mass. […] Nutrition: Eating foods on an anti-inflammatory plan, sometimes called the Mediterranean diet, may minimize flare-ups.

• #2 Current Treatment for Myositis

  https://pmc.ncbi.nlm.nih.gov/articles/PMC6299051/

  Despite these proposals and several ongoing trials, glucocorticoids (GCs) remain the first-line therapy in treatment of IIM, but the use of immunosuppressive drugs as adjunctive therapy is increasing in the early phases of the disease, both for adjunctive efficacy and for their steroid sparing effect. […] In each patient with a recent-onset IIM, the prescription of an immunosuppressive agent should be considered from the first phase of treatment, as early treatment is associated with a better outcome. […] Based on accumulated data on the beneficial effect of exercise in patients with PM and DM, all patients with IIM can be recommended to start physical training as soon as possible after start of immunosuppressive treatment. To begin with, an individualized training program under the supervision of a physiotherapist is recommended. Exercise may be performed at the hospital but several studies suggest a combination of home-based training program in combination to hospital-based exercise. […] The beneficial effects of exercise in patients with PM and DM are more evident with medium- and long-term durations. Exercise load and intensity of the treatment should be individually adapted to disease activity, GC dose, and patients characteristics.

• #2 Myositis – Karolinska University Hospital

  https://www.karolinskahospital.com/care-at-karolinska/conditions/myositis/

  Many patients need help and support conversations from a social worker to navigate the social support system. […] The myositis clinic at Karolinska University Hospital was established in 1993 by Professor Ingrid Lundberg. […] Since then, the myositis team has grown and now consists of seven rheumatologists, a nurse, a physical therapist, an occupational therapist, and a social worker. The team meets on a weekly basis. […] We have multidisciplinary conferences with pulmonologists, neurologists, dermatologists, and muscle pathologists.

• #2

  https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=uf8931

  Call your doctor or nurse advice line now or seek immediate medical care if: Your muscle pain or weakness suddenly gets worse. […] Watch closely for changes in your health, and be sure to contact your doctor or nurse advice line if: You have side effects from the medicines that help control the immune system.

• #2 Caregiver and Care Partner Resources – Myositis Support and Understanding

  https://understandingmyositis.org/caregiver-resources/

  Myositis Support and Understandings Care partners, Family, and Friends Facebook support group is a place for care partners and all of those involved in a Myositis patients life to come together and learn more about Myositis and get the support you need and deserve. […] We do understand that the person living with myositis may not be able to participate without you, so we do consider adding care partners and caregivers on a case-by-case situation. […] Caregivers, use Respite services! […] The list of caregiver duties can become endless for many who provide care for a loved one or senior in need. Being a caregiver is a daily responsibility with very little downtime or relief. One of the most important things a caregiver can do is develop an organized plan to aid them in their responsibilities and look for ways to make their lives easier.

• #2 Our specialized team with experience in different types of idiopathic inflammatory myopathies provides comprehensive, personalized myositis care. – Rheumatology | UCLA Health

  https://www.uclahealth.org/medical-services/rheumatology/inflammatory-myositis

  Our specialized team with experience in different types of idiopathic inflammatory myopathies provides comprehensive, personalized myositis care. […] The goal of the UCLA Myositis Program is to provide the highest level of individualized, tailored care to patients with myositis. Patients with suspected or diagnosed myositis, their families, and doctors can all benefit from our program, which includes care by a team of experts in these very rare but serious diseases. […] Early recognition and aggressive, comprehensive care is key to achieving disease control and limiting disease complications. […] Our expert team includes specialists from many different fields of medicine to meet the needs of patients with myositis who may have systemic involvement of different organ systems beyond the muscle tissue.

• #2 Myositis: Types, Symptoms, Causes and Treatment

  https://www.carehospitals.com/diseases-conditions/myositis

  Myositis is a complex and challenging condition that has a significant impact on the lives of those affected. While there’s no cure for myositis yet, ongoing research offers hope for better treatments in the future. In the meantime, a combination of medical care, physical therapy, and lifestyle changes can help many people with myositis lead fulfilling lives.

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