Juvenile Myositis (JM)

What is Juvenile Myositis?

Juvenile myositis is a group of rare autoimmune diseases in which the immune system causes inflammation in the muscles of a child, and often in the skin. The most common form is juvenile dermatomyositis, which involves the muscles, skin and small blood vessels.^{[1, 2]} It is a serious condition that needs care from a pediatric rheumatologist, and early, active treatment is linked with a better outlook.^[3]

Common symptoms

The typical symptoms are symmetrical weakness of the muscles closest to the trunk, with a heliotrope rash (purplish discoloration around the eyes) and Gottron papules (raised red or purple bumps over the knuckles).^[1] Children may have trouble climbing stairs, standing up from the floor or lifting their arms, and may be unusually tired.^[3]

• Muscle weakness in the hips, thighs and shoulders
• Rash on the eyelids, knuckles, chest or back
• Tiredness and, in some children, joint pain or low fever
• Hard calcium deposits under the skin (calcinosis), which are common in the juvenile form^[1]

Causes and risk factors

The cause is unknown. Researchers describe immune cell dysregulation, increased interferon signaling and damage to small blood vessels, with complement-mediated injury to vessels as a major mechanism.^{[3, 4]} Genetic factors and triggers such as infection are suspected. The disease is not contagious.

Unlike adult dermatomyositis, the juvenile form is not associated with an increased risk of cancer.^[1] Antibodies found in the blood define subgroups that differ in outlook, including risk of lung involvement.^[5]

How it is diagnosed and treated conventionally

Diagnosis combines the history, examination of muscle strength and skin, raised muscle enzymes in blood, antibody tests and MRI, and sometimes muscle biopsy.^{[3, 5]} Management follows published consensus recommendations from pediatric rheumatology groups.^[6]

High-dose corticosteroids remain fundamental in initial treatment, usually with methotrexate, and the aim is gradual tapering with inactive disease as the target.^{[3, 7]} Many children do not respond fully to first-line treatment, and biologic or other targeted drugs are used in refractory disease.^[4] Evidence for many of these drugs is limited and based largely on case series and open-label studies.^[4]

Why Juvenile Myositis calls for a whole-person approach

Juvenile myositis is driven by the immune system, so treatment is medical and often prolonged. It also affects daily life through weakness, tiredness, skin symptoms and the effects of long-term treatment, and these are the areas where supportive care might help.

Evidence for supportive therapies in this disease is thin, so the points below describe what is known about the disease itself and where research is absent.

Immune activity and blood vessels

Juvenile dermatomyositis is a systemic immune-mediated vasculopathy, meaning a disease of small blood vessels as well as muscle.^{[2, 3]} This is why treatment targets the immune system directly, and why no complementary therapy should be used as a substitute.

Long-term disease course and quality of life

Many children have a chronic or relapsing course, and long-term outlook and health-related quality of life are active areas of research.^{[2, 4]} Support for comfort, sleep and coping can matter alongside medical goals.

Muscle strength and movement

Treatment targets include normalizing muscle strength, and international recommendations on JDM were written with input from physical therapy and exercise specialists.^{[6, 7]} Any exercise program should be guided by the rheumatology and physical therapy team.

Acupuncture as supportive care in Juvenile Myositis

What the research shows

No clinical trials of acupuncture in juvenile myositis or dermatomyositis were found in PubMed. There is no evidence that acupuncture affects muscle inflammation, rash or the course of this disease.

An overview of 24 systematic reviews of acupuncture in children found that the evidence for pain reduction and for a few other conditions was promising but was unclear for many others. Only 6 of the 24 reviews were high quality, and the high-quality reviews tended to give neutral or negative results.^[8] This is general pediatric evidence and not specific to juvenile myositis.

How acupuncture may work

For juvenile myositis nothing is known about how acupuncture might act, and we do not claim that it changes the immune process.

What treatment involves

Acupuncture uses fine, sterile, single-use needles, with sessions typically around 20 to 40 minutes in adults. Practitioners adjust what they do for the person in front of them. For a child, this should be discussed with the child's pediatric rheumatologist first.

A systematic review of acupuncture safety in children found that most adverse events were mild, such as pain, bruising and bleeding, in about 12 percent of patients, while serious events were reported, many of them possibly related to poor practice.^[9] In adults, prospective studies found minor reactions in about 9 in 100 patients and serious events in about 1 in 10,000.^[10]

Children on high-dose steroids or other immune-suppressing drugs can be more prone to infection, and skin affected by rash or calcinosis needs special care, so these should be told to the practitioner and the medical team before any treatment. Also tell the practitioner about bleeding problems, blood thinners and low blood counts.

Ayurvedic medicine as supportive care in Juvenile Myositis

The Ayurvedic view

Ayurveda has no classical name that matches juvenile myositis. Muscle weakness, skin eruptions and fatigue are traditionally discussed in terms of imbalanced doshas, impaired digestion (agni) and accumulated toxins (ama). These are traditional ideas, not biomedical diagnoses.

Therapies that may be used

Traditional care is individualized and may include:

• Simple, regular, easily digested meals and a steady daily and sleep routine
• Gentle breathing practices and relaxation within the child's activity limits
• Mild oil massage on intact skin
• Herbs chosen individually by a qualified practitioner, only with the treating team's agreement

Panchakarma is not appropriate for a child with active disease, during high-dose steroid or immune-suppressing treatment, in acute illness or frailty, or in pregnancy.

What the research shows

No clinical trials of Ayurvedic medicine, Panchakarma or Ayurvedic herbs in juvenile myositis or dermatomyositis were found in PubMed, so we cannot say whether they help or harm. Children may be more vulnerable than adults to harm from herbal preparations, including contamination and interactions with conventional medicines.^[11] Ayurvedic products also carry a quality risk: about one fifth of Ayurvedic medicines bought over the Internet contained detectable lead, mercury or arsenic.^[12]

Herbal medicine as supportive care in Juvenile Myositis

Herbs and formulas that have been studied

No herb or herbal formula has been studied as a treatment for juvenile myositis. Traditional Chinese medicine and Ayurveda use many formulas for muscle weakness, rashes and fatigue, but we found no clinical studies of them in this disease, and we do not recommend any herb for it.

What the research shows

There is no evidence on whether herbal medicine helps or harms children with juvenile myositis. We do not suggest products marketed as immune boosters, which could work against immune-suppressing treatment in a child with an autoimmune disease.

Safety and herb-drug interactions

Children may be more vulnerable to harm from herbal products because of their developing bodies and different dose needs, and reactions can come from drug interactions, heavy-metal contamination and adulterated products.^[11] A general review of herb-drug interactions described reduced levels of immunosuppressants such as cyclosporin and tacrolimus with St John's wort, and bleeding with some herbs when combined with warfarin or aspirin.^[13]

Herbal and dietary supplements can also injure the liver, which matters in children taking methotrexate or other medicines that affect the liver.^[14] Every herb or supplement must be reviewed against the child's full medicine list by the treating team.

Translating traditional medicine into modern biological language

This is interpretation, not equivalence. Chinese medicine may describe muscle weakness as spleen or qi deficiency and rashes as heat in the blood, and Ayurveda may describe aggravated Pitta with weak agni. Modern medicine describes juvenile dermatomyositis as an immune-mediated disease of small blood vessels with interferon signaling and complement-mediated vessel injury.^{[3, 4]} No study has shown that a TCM pattern or a dosha corresponds to these processes, and traditional ideas do not replace the treatments that act on them.

How this care fits with your medical care

Juvenile myositis needs specialist medical care, and any complementary care is supportive only. For a condition like this, we ask that you are under a physician's care for it and that your treating team knows you are receiving complementary care. We do not diagnose myositis or its complications, prescribe or change prescription drugs, or replace your child's pediatric rheumatologist and other physicians.

Do not stop or change steroids, methotrexate, immunoglobulin or any other prescribed treatment without the prescriber, and tell the treating team about any complementary care. Please bring the diagnosis, antibody and muscle enzyme results, a full list of medicines and supplements, and any recent test or imaging reports.

When to seek urgent medical care

Juvenile myositis can involve the muscles used for swallowing and breathing and other organs, so sudden changes need prompt attention.^{[1, 5]}

• Trouble breathing, shortness of breath or a new persistent cough
• Difficulty swallowing, choking or a weak voice
• Rapidly worsening weakness, or being unable to stand or lift the head
• Severe abdominal pain, vomiting blood or black stools
• Fever or signs of infection in a child taking immune-suppressing medicine
• Painful, ulcerated or infected skin sores

If any of these occur, call 911 or go to the nearest emergency department.