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Patient handout

Connective-tissue-disease-associated ILD (CTD-ILD / IPAF)

PRODUCTION

1. Your condition

This handout is for connective-tissue-disease-associated ild (ctd-ild / ipaf). Your care team identified this based on: known ctd (ssc/ra/iim/sjögren/mctd/sle) + new dyspnea / cough / pft decline / hrct change (acr/chest 2023).

Other reasons your team may use this plan: hrct ild pattern (nsip > uip; ra-ild often uip) in a patient with autoimmune features (acr/chest 2023); progressive exertional dyspnea + dry cough with extrapulmonary autoimmune features (acr/chest 2023); newly discovered ild + positive ana/ena/rf/ccp/myositis serology (ipaf — fischer ers/ats 2015).

2. Your medications

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

MedicationStarting doseHowWhenWhat it does
mycophenolate mofetil500 mg PO BID, titrate to target 1500 mg PO BID as toleratedPOBIDSLS II (Tashkin Lancet Respir Med 2016 PMID 27469583): MMF 24 mo ≈ oral CYC 12 mo on %FVC (no significant between-group difference p=0.24) with markedly less toxicity (leucopenia 4 vs 30; fewer deaths 5/69 vs 11/73) → MMF preferred first-line for most CTD-ILD. Teratogenic — contraindicated in pregnancy (REMS); reliable contraception required
cyclophosphamideIV 500–750 mg/m2 q4 weekly (or oral ≤2 mg/kg/day per SLS I); pulse preferred for toxicityIVq4 weeks (induction course)SLS I (Tashkin NEJM 2006 PMID 16790698): oral CYC vs placebo improved 12-mo FVC%-pred by +2.53% (95% CI 0.28–4.79; P<0.03). Reserve for severe/rapidly progressive disease or as combination component in anti-MDA5 RP-ILD (Tsuji 2020 PMID 31524333). Teratogenic, gonadotoxic, hemorrhagic cystitis (mesna + hydration), myelosuppression — contraindicated in pregnancy
rituximab1000 mg IV at weeks 0 and 2 (RECITAL regimen)IVweeks 0 and 2, repeat per B-cell/clinical courseRECITAL (Maher Lancet Respir Med 2023 PMID 36375479): rituximab NOT superior to IV CYC (24-wk FVC difference −40 mL, 95% CI −153 to 74, p=0.49) but EQUIVALENT efficacy with fewer adverse events (445 vs 646) and lower corticosteroid exposure → viable alternative to IV CYC for severe CTD-ILD requiring IV therapy. Screen HBV; infusion reactions; infection/hypogammaglobulinaemia risk
tocilizumab162 mg SC weeklySCweeklyfocuSSced (Khanna Lancet Respir Med 2020 PMID 32866440): primary skin (mRSS) endpoint NOT met (p=0.10), but secondary FVC%-predicted favoured tocilizumab (LSM difference 4.2, 95% CI 2.0–6.4, nominal p=0.0002) → preserves lung function in early dcSSc-ILD with elevated acute-phase reactants. GI-perforation risk (caution with diverticulitis/steroids/NSAIDs); infection; LFT/lipid/neutrophil monitoring
nintedanib150 mg PO BID (100 mg BID if Child-Pugh A / poor tolerance)POBID WITH FOODSENSCIS (Distler NEJM 2019 PMID 31112379): SSc-ILD adjusted annual FVC −52.4 vs −93.3 mL/yr (Δ 41.0 mL/yr; 95% CI 2.9–79.0; P=0.04). INBUILD (Flaherty NEJM 2019 PMID 31566307) PF-ILD −80.8 vs −187.8 mL/yr; autoimmune-ILD subgroup +104.0 mL/yr (Wells 2020 PMID 32145830). ADD-ON to immunosuppression (not a replacement) for SSc-ILD or any CTD-ILD meeting ATS/ERS 2022 PPF criteria. Diarrhoea (loperamide + dose-reduce 150→100 BID); hepatotoxicity; bleeding/ATE risk — caution on full anticoagulation; CYP3A4/P-gp substrate
prednisonelowest effective dose; KEEP <15 mg/day prednisone-equiv in SSc (renal-crisis precipitant)POonce dailyBackground/bridge anti-inflammatory for inflammatory CTD-ILD (IIM, anti-synthetase, NSIP with inflammation, SLE/MCTD/Sjögren). SSc CAUTION: moderate-high dose glucocorticoid (prednisone-equiv >15 mg/day), especially in early diffuse cutaneous SSc / RNA-pol-III+, is a SCLERODERMA RENAL CRISIS precipitant — use lowest effective dose, monitor BP + creatinine closely, and prefer steroid-sparing immunosuppression in SSc
methylprednisolone500–1000 mg IV daily ×3 (pulse) then high-dose oral taper — anti-MDA5 RP-ILD / severe acute IIM-ILDIVpulse ×3 then transition to oral with slow taper over monthsHigh-dose pulse glucocorticoid is a component of the anti-MDA5 RP-ILD combination regimen (Tsuji 2020 PMID 31524333 — high-dose GC + tacrolimus + IV CYC). Taper over months guided by ferritin/HRCT/PFT response (encoded here in rationale/monitoring — `taper_plan` is not a _types.ts field). AVOID high-dose pulse as first move in SSc-dominant disease (renal-crisis risk)
tacrolimus (anti-MDA5 RP-ILD combination component)PO titrated to trough 5–10 ng/mL, as part of up-front combination with high-dose GC + IV CYCPOBID titrated to troughSpecial-pop: anti-MDA5 RP-ILD EMERGENCY branch — Tsuji 2020 (PMID 31524333) up-front combination (high-dose GC + tacrolimus + IV CYC, ± plasmapheresis if worsening) gave 6-mo survival 89% vs 33% for step-up therapy (P<0.0001). TIME-CRITICAL: combination must start early (IV CYC given ~20 days earlier than step-up). Intensive opportunistic-infection surveillance (frequent CMV reactivation reported); PJP prophylaxis
mycophenolate mofetil (SSc steroid-sparing — renal-crisis caution)500 mg BID → target 1500 mg BID; minimise concurrent glucocorticoidPOBIDSpecial-pop: SSc branch — SSc-ILD is the leading cause of SSc-related death; MMF is the preferred steroid-sparing first-line (SLS II PMID 27469583). Because moderate-high glucocorticoid precipitates scleroderma renal crisis (esp. early dcSSc / RNA-pol-III+), build the regimen around steroid-sparing IS ± nintedanib add-on and keep any glucocorticoid <15 mg/day prednisone-equiv with BP/creatinine surveillance
RA-ILD methotrexate-pneumotoxicity disambiguation + MTX withdrawalhold/withdraw MTX; distinguish MTX pneumonitis from RA-ILD progression (temporal relation, BAL, HRCT pattern); RA-ILD is often UIPn/aat presentation and on any respiratory change in RA on MTXSpecial-pop: RA-ILD branch — methotrexate pneumotoxicity is a key confounder; new respiratory disease in RA-on-MTX requires disambiguating drug-induced pneumonitis (often reversible on withdrawal) from progressive RA-ILD. RA-ILD is the notable UIP-predominant CTD-ILD (worse prognosis) → if UIP/PPF, antifibrotic add-on (nintedanib INBUILD PMID 31566307) is relevant alongside RA-directed therapy
pregnancy — switch off teratogenic immunosuppressiondiscontinue MMF and cyclophosphamide pre-conception; switch to pregnancy-compatible IS (e.g., azathioprine or a calcineurin inhibitor) with rheumatology co-managementn/apre-conception planning and throughout pregnancySpecial-pop: pregnancy branch — mycophenolate mofetil and cyclophosphamide are TERATOGENIC and CONTRAINDICATED in pregnancy (MMF REMS; CYC fetotoxic/gonadotoxic). Plan ahead: stop teratogenic agents before conception, bridge with a pregnancy-compatible immunosuppressant, and co-manage CTD activity with rheumatology/MFM
nintedanib 100 mg BID (hepatic impairment — Child-Pugh A; AVOID Child-Pugh B/C)100 mg PO BID (reduced)POBID with foodSpecial-pop: hepatic/renal-dosing branch — nintedanib Child-Pugh A reduce to 100 mg BID; NOT recommended Child-Pugh B/C (DailyMed label). MMF/CYC require renal-function-aware dosing and intensified CBC/LFT surveillance; choose the best-tolerated combination with tighter monitoring when hepatic/renal impairment coexists

Plan: CTD-ILD treat-the-CTD immunosuppression + antifibrotic add-on — ACR/CHEST 2023 + ATS/ERS PPF 2022

3. When to call your provider

Contact your care team if any of the following happen:

  • Anti-MDA5 RP-ILD features (acute hypoxemia + amyopathic-DM signs + ferritin↑↑) → ED/inpatient time-critical combination IS (Tsuji 2020 PMID 31524333)
  • Scleroderma renal crisis (accelerated HTN + AKI) → ED/inpatient (ACE-inhibitor; hold high-dose steroid)
  • Rapid FVC decline / PPF despite IS → expedite antifibrotic add-on + transplant evaluation

4. When to seek emergency care

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

  • Anti-MDA5-positive rapidly progressive ILD — acute hypoxemic ILD + amyopathic-DM skin signs (Gottron papules, heliotrope, mechanic’s hands, palmar/periungual papules) + ferritin↑↑ + MDA5+; ~50% untreated mortality, time-critical(life-threatening)
  • Scleroderma renal crisis — accelerated/malignant HTN + AKI ± microangiopathic hemolytic anemia, especially early diffuse cutaneous SSc / RNA-pol-III+ / recent glucocorticoid >15 mg/day prednisone-equiv(life-threatening)
  • Acute exacerbation of CTD-ILD — acute worsening dyspnea + new bilateral GGO/consolidation NOT fully explained by infection, PE, or cardiogenic edema, on a CTD-ILD background
  • Progressive pulmonary fibrosis on a CTD-ILD background — ≥2 of 3 (worsening respiratory symptoms, radiologic progression, physiologic FVC/DLCO decline) within 1 yr, no alternative explanation, despite appropriate management (ATS/ERS 2022 PPF)
  • Resting oxygen level (SpO₂) ≤88% on room air in CTD-ILD
  • Acute deterioration on CTD-ILD background — RP-ILD/acute exacerbation vs mimic? §5.5.2: infection (PJP/CMV/viral/bacterial — high index on immunosuppression) vs PE (CTPA — D-dimer NON-discriminating in established ILD) vs cardiogenic edema (natural marker of fluid overload (BNP)↑↑, echo) vs scleroderma renal crisis (BP/creatinine in SSc) vs drug-induced ILD (recent culprit) vs anti-MDA5 RP-ILD (MDA5+, ferritin↑↑) vs idiopathic acute exacerbation (diagnosis of exclusion)(life-threatening)

5. Follow-up

Rheumatology + pulmonology ILD co-clinic q3–6 mo, PPF re-assessment driving antifibrotic add-on, transplant referral for progressive refractory disease, vaccination, pregnancy planning (switch off teratogenic CYC/MMF pre-conception), comorbidity sweep (PH-ILD, GERD-aspiration in SSc, lung-cancer surveillance), palliative integration for advanced disease (ACR/CHEST 2023)

6. Sources

Guideline: 2023 ACR/CHEST Guideline for Screening & Monitoring of ILD in people with SARDs; ATS/ERS/JRS/ALAT 2022 IPF update + Progressive Pulmonary Fibrosis Guideline

  1. pubmed.ncbi.nlm.nih.gov/38973729
  2. pubmed.ncbi.nlm.nih.gov/38973714
  3. pubmed.ncbi.nlm.nih.gov/35486072