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Patient handout

Pulmonary hypertension crisis in scleroderma (PAH-SSc WHO Group 1 — RV failure with shock)

PRODUCTION

1. Your condition

This handout is for pulmonary hypertension crisis in scleroderma (pah-ssc who group 1 — rv failure with shock). Your care team identified this based on: known pah-ssc + acute progressive dyspnea + hypoxia + jvd + lower extremity edema + new oliguria — rv failure crisis (esc/ers 2022 pmid 36215974).

Other reasons your team may use this plan: systemic sclerosis + new exertional dyspnea + reduced 6mwt distance + dlco disproportionately low → urgent echo/rhc for pah (detect algorithm); bnp >300 or nt-probnp >1400 + ecg rv strain pattern + elevated troponin (rv ischemia) — high-risk pah crisis; pah-ssc + syncope or near-syncope on exertion → high-risk rv failure prognostic indicator (esc/ers 2022 high-risk reveal/compera).

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
inhaled nitric oxide20-40 ppm via mask or ventilatorinhaledcontinuousESC/ERS 2022 PMID 36215974 — pulmonary-selective vasodilation without systemic SVR drop; rapid titration; ideal acute crisis bridge
milrinone0.25-0.5 mcg/kg/min IV (no bolus to avoid SVR drop)IVcontinuousNegative-afterload inotrope reducing PVR + improving RV-PA coupling; ESC/ERS 2022 — milrinone preferred over dobutamine in RV failure (less tachycardia)
epoprostenol (Flolan)2 ng/kg/min IV continuous, titrate by 1-2 ng/kg/min q15-60 min as tolerated; typical maintenance 20-40 ng/kg/minIV continuous (dedicated central line)continuous 24/7 NEVER interruptESC/ERS 2022 PMID 36215974 — IV epoprostenol most potent PVR reducer; mortality benefit in severe PAH; ABRUPT CESSATION = FATAL REBOUND (dedicated 24/7 infusion + backup pump mandatory)
treprostinil1.25 ng/kg/min IV/SC, titrate; or inhaled 18 mcg QIDIV/SC/inhaledcontinuous IV/SC or QID inhaledESC/ERS 2022 — alternative to epoprostenol; longer half-life makes interruption less catastrophic; site reactions with SC
sildenafil20 mg PO TID (chronic) or 10 mg IV TID acutePO/IVTIDESC/ERS 2022 PMID 36215974 — PDE5i pulmonary-selective vasodilator; combination therapy backbone; avoid concurrent nitrate
tadalafil40 mg PO dailyPOdailyESC/ERS 2022 — once-daily PDE5i; AMBITION trial component PMID 26308684
ambrisentan5 mg PO daily, titrate to 10 mgPOdailyAMBITION trial PMID 26308684 — initial combination ambrisentan + tadalafil superior to monotherapy in PAH; LFT monitoring mandatory monthly
macitentan10 mg PO dailyPOdailySERAPHIN PMID 23984728 — macitentan reduces morbidity/mortality in PAH; less hepatotoxic than bosentan
selexipag200 mcg PO BID, titrate by 200 mcg q3-7d to max 1600 mcg BIDPOBIDGRIPHON PMID 26699168 — selexipag reduces morbidity in PAH; oral alternative to parenteral prostacyclin
riociguat1 mg PO TID, titrate to 2.5 mg PO TIDPOTIDPATENT-1 PMID 23883378 — sGC stimulator; AVOID concurrent PDE5i (additive hypotension)
furosemide20-40 mg IV initially (cautious; RV preload-dependent); reassess CVP/IVCIVBID-TIDReduce RV preload + tricuspid regurgitation; CAUTIOUS — overdiuresis worsens cardiac output (RV preload-dependent)
norepinephrine0.05-0.5 mcg/kg/min IV titrate to MAP ≥65IV continuouscontinuousNE preserves RV coronary perfusion via systemic MAP; preferred over dopamine (less tachy/arrhythmia)
AVOID systemic vasodilators (NTG, hydralazine, nitroprusside)AVOIDN/AN/AESC/ERS 2022 PMID 36215974 — systemic vasodilators worsen V/Q mismatch (vasodilate non-PAH territories) + drop SVR without pulmonary selectivity → catastrophic systemic hypotension
AVOID beta-blockerAVOIDN/AN/ANegative inotropy in already-failing RV; if AFib rate control needed, prefer digoxin
AVOID positive-pressure ventilation if possibleAVOID PEEP > 5; minimize tidal volumesN/AN/APEEP increases intrathoracic pressure → reduces RV preload → worsens cardiac output; if intubation needed use lowest PEEP + lung-protective ventilation
AVOID CCB unless documented +vasoreactivityAVOIDN/AN/APAH-SSc rarely vasoreactive (<5%); CCB monotherapy without +RHC vasoreactivity test → harm; reserved only for confirmed responders
RV-MCS bridge to lung transplantRVAD or VA-ECMO per CT surgeryextracorporealcontinuousESC/ERS 2022 — RV-MCS (RVAD or VA-ECMO) bridge to bilateral lung transplant for refractory PAH; mortality benefit if appropriate candidate

Plan: Pulmonary HTN crisis in scleroderma — pulmonary-selective vasodilators (iNO + milrinone + IV epoprostenol + PDE5i bridge); AVOID systemic vasodilators; RV-MCS bridge to lung transplant for refractory

3. When to call your provider

Contact your care team if any of the following happen:

  • REVEAL 2.0 worsening → escalate triple therapy + transplant listing acceleration
  • New AKI / cardiorenal → nephrology
  • Recurrent crisis → ED + ICU
  • Family planning desire → high-risk OB + termination discussion

4. When to seek emergency care

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

  • PAH-SSc crisis + cardiogenic shock from RV failure (SBP <90 + lactate ≥2 + cool extremities + oliguria + low CI on echo)(life-threatening)
  • Severe adverse event on PH-targeted therapy — ERA hepatotoxicity (LFT >3x ULN) OR IV prostacyclin line-related sepsis OR pump malfunction with abrupt cessation(life-threatening)
  • PAH-SSc crisis + concurrent new SBP ≥150 OR ≥30 mmHg above baseline + AKI + MAHA features — rare but documented overlap of two scleroderma vasculopathy emergencies(life-threatening)
  • PAH-SSc with REVEAL 2.0 high-risk despite max combination therapy — bilateral lung transplant listing decision point

5. Follow-up

Lifelong PH center + rheumatology + cardiology + transplant team coordination; combination triple therapy (ERA + PDE5i + prostacyclin) per AMBITION/SERAPHIN/GRIPHON; quarterly REVEAL 2.0 risk reassessment; pulmonary HTN registry; bilateral lung transplant listing for severe (FC III-IV despite max therapy); avoid pregnancy (high mortality in PAH); avoid systemic vasodilators; AVOID erectile dysfunction PDE5i if on PAH PDE5i (additive hypotension)

6. Sources

Guideline: ESC/ERS 2022 PH Guidelines (Humbert PMID 36215974) + AMBITION (Galiè NEJM 2015 PMID 26308684) + SERAPHIN (Pulido NEJM 2013 PMID 23984728) + GRIPHON (Sitbon NEJM 2015 PMID 26699168) + 2025 ACC/AHA HTN (Whelton)

  1. pubmed.ncbi.nlm.nih.gov/36215974
  2. pubmed.ncbi.nlm.nih.gov/26308684
  3. pubmed.ncbi.nlm.nih.gov/23984728