Patient handout

Idiopathic inflammatory myopathy (myositis)

PRODUCTION

1. Your condition

This handout is for idiopathic inflammatory myopathy (myositis). Your care team identified this based on: subacute symmetric proximal muscle weakness (difficulty rising from chair, climbing stairs, arms overhead).

Other reasons your team may use this plan: elevated ck / aldolase / ast-alt / ldh without hepatobiliary cause; gottron papules / heliotrope rash / shawl-v sign / mechanic’s hands; new ild (dyspnea/cough) or dysphagia with proximal weakness.

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
methylprednisolone (pulse)	0.5–1 g IV daily × 3 days	IV	daily × 3 d	2024 IIM management reviews — pulse induction for organ-threatening / severe disease before oral taper
prednisone	1 mg/kg/day (max ~80 mg/d) PO	PO	daily, slow taper over 6–12 months	2017 EULAR/ACR-classified IIM — high-dose oral GC backbone; minimise cumulative dose with early steroid-sparer

Plan: Myositis — severity/subtype triage → GC backbone → steroid-sparer → IVIG → rituximab → anti-MDA5 triple therapy → IBM supportive → cancer-directed

3. When to call your provider

Contact your care team if any of the following happen:

New/worsening dyspnea or falling DLCO → urgent HRCT, escalate (RP-ILD risk) (anti-MDA5 ILD evidence)
New dysphagia → admit + swallow eval + escalate therapy (2024 reviews)
Cardiac symptoms / troponin rise → ED + cardiology (2024 reviews)
Rapidly progressive weakness / hypoxemia → ED/ICU (2024 reviews)

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

Anti-MDA5 (often amyopathic, low CK) with rapidly progressive ILD and hypoxemic respiratory failure(life-threatening)
Respiratory-muscle weakness — declining FVC, paradoxical breathing, rising CO2(life-threatening)
Severe pharyngeal/esophageal weakness with aspiration / aspiration pneumonia
Myocarditis or significant arrhythmia (elevated cardiac troponin, conduction disease, reduced EF)(life-threatening)
Malignancy detected at diagnosis/surveillance (esp DM, anti-TIF1γ / anti-NXP2)

5. Follow-up

Lifelong rheumatology/neuromuscular continuity; steroid minimisation + bone/PJP protection; pulmonary follow-up for ILD; cancer surveillance schedule; PT/OT + speech therapy; vaccination (non-live on immunosuppression); pregnancy planning on compatible agents; IBM disability/assistive-device planning

6. Sources

Guideline: 2017 EULAR/ACR IIM classification criteria + 2024 IIM management reviews; ProDERM IVIG NEJM 2022; anti-MDA5 ILD combination-immunosuppression evidence