Patient guide

Living well on treatment.

Beyond medication and rehabilitation, a few daily habits make a real difference on immunosuppressive treatment: protecting against infection, looking after your bones and skin, staying on top of vaccines, and managing energy.

Infection

Lowering your infection risk.

Most myositis medications calm the immune system, so simple precautions matter and early signs deserve attention.

Wash your hands often and avoid close contact with people who are actively sick.
Treat any fever, chills, persistent cough, or painful urination as worth a call. Some medications can mask early infection.
Practice food safety on stronger immunosuppressants: avoid raw or undercooked meat and unpasteurized dairy.
Tell every provider, including your dentist, which medications you take before any procedure.

Vaccines

Which vaccines, and when.

Flu and COVID vaccines are safe and recommended on all of these medications.
Avoid live vaccines (live MMR, varicella, yellow fever, nasal flu spray) while on immunosuppressants. Ask before any vaccination.
Where possible, get vaccines up to date before starting treatment.
If you are starting a JAK inhibitor, the shingles vaccine is strongly recommended beforehand.

Bones, skin & eyes

Protecting the rest of you.

Bone health

On long-term steroids, take calcium and vitamin D as directed.
Your doctor may order a bone density scan and a bone-protective medication.
Weight-bearing activity (walking, stairs, light resistance) helps maintain bone.

Skin and eyes

Use SPF 30+ sunscreen daily. Several medications increase sun sensitivity and skin-cancer risk.
Attend annual skin checks on long-term immunosuppressants.
Keep your annual eye exam if you take hydroxychloroquine.

Energy

Managing fatigue and daily life.

Fatigue is part of myositis for many people. Working with it, rather than against it, protects your function.

Pace yourself. Alternate demanding tasks with rest rather than pushing to exhaustion.
Prioritise. Spend your best hours on what matters most that day.
Conserve effort with tools and setups that reduce standing, gripping, and reaching. An occupational therapist can help.
Keep moving within your limits. Structured, guided exercise through the Centre’s approach supports both strength and energy.
Carry a medical alert card if you are on long-term steroids.

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