Patient handout

Sarcoidosis (pulmonary + extrapulmonary)

PRODUCTION

1. Your condition

This handout is for sarcoidosis (pulmonary + extrapulmonary). Your care team identified this based on: bilateral hilar adenopathy ± pulmonary infiltrates on chest imaging (ats 2020 dx cpg pmid 32293205).

Other reasons your team may use this plan: erythema nodosum, lupus pernio, or other cutaneous sarcoid (ats 2020); acute löfgren syndrome: bhl + erythema nodosum + ankle arthritis ± fever (good-prognosis variant, spontaneous remission >85% at 2 yr); uveitis, optic neuritis, or sarcoid eye disease; heerfordt (uveoparotid fever) (ats 2020).

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
structured observation (no immunosuppression) ± NSAID for Löfgren arthralgia	FVC/DLCO + symptom review q3–6 mo; NSAID PRN for Löfgren ankle arthritis	n/a	q3–6 month surveillance	ERS 2021 (PMID 34140301): treatment is to reduce morbidity/mortality or improve QoL — NOT to normalise the CXR. Most Scadding I/II remit; premature steroid commits to taper + relapse. Löfgren good prognosis: NSAID for arthralgia, avoid steroid escalation

Plan: ERS 2021 / HRS 2014 sarcoidosis treat-vs-observe + organ-driven stepwise ladder

3. When to call your provider

Contact your care team if any of the following happen:

New cardiac symptom / arrhythmia → STAT ECG + cardiac MRI/FDG-PET + EP (HRS 2014)
New neuro deficit → MRI brain/spine + LP (ERS 2021)
Hypercalcemia + rising creatinine → urgent steroid + saline (ATS 2020)
FVC decline ≥10% or DLCO ≥15% → step up immunosuppression (ERS 2021)

4. When to seek emergency care

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

New high-grade AV block / sustained VT / heart pumping strength (LVEF) reduction / FDG-PET active uptake in sarcoid patient (HRS 2014 PMID 24819193)(life-threatening)
Bilateral facial palsy / aseptic meningitis / cord lesion / hydrocephalus / new seizure / optic neuropathy with sarcoid (ERS 2021 PMID 34140301)
Latent TB screening MANDATORY before infliximab / adalimumab (or any TNF-α) for sarcoid — IGRA (preferred) or TST + CXR + risk review
Calcium >14 (or symptomatic + AKI/AMS) with PTH suppressed + 1,25-OH-D elevated in sarcoid (granuloma 1α-hydroxylase) (ATS 2020 PMID 32293205)
Posterior/panuveitis with vision loss or cystoid macular edema (ATS 2020)
Scadding IV fibrosis with declining FVC despite immunosuppression, OR echo TRV >2.8 m/s / RV dysfunction (sarcoidosis-associated pulmonary hypertension, WHO Group 5) (ERS 2021)
TB reactivation on infliximab / adalimumab (fever, cough, weight loss, new infiltrate)(life-threatening)

5. Follow-up

Pulm + organ-relevant specialty q3–6 mo; non-live vaccinations before/on immunosuppression; PJP prophylaxis if combined IS; bone protection on chronic steroid; fatigue + small-fiber neuropathy + QoL screen (ERS 2021)

6. Sources

Guideline: ATS 2020 Diagnosis & Detection of Sarcoidosis CPG (Crouser AJRCCM 2020; PMID 32293205) + ERS 2021 Treatment of Sarcoidosis CPG (Baughman Eur Respir J 2021; PMID 34140301) + HRS 2014 cardiac sarcoid expert consensus (Birnie Heart Rhythm 2014; PMID 24819193)