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Patient handout

ADHF in cardiac amyloidosis (ATTR-CM and AL)

PRODUCTION

1. Your condition

This handout is for adhf in cardiac amyloidosis (attr-cm and al). Your care team identified this based on: hf symptoms + lv wall thickness ≥12 mm + no long-standing htn → amyloidosis screen.

Other reasons your team may use this plan: hf + low-voltage qrs on ecg + thick lv walls (voltage-mass mismatch — amyloid signature); elderly male with bilateral carpal tunnel release history + new hf (attrwt clue); monoclonal protein on spep/sflc + hf symptoms → al amyloidosis emergent workup.

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
tafamidis61 mg PO daily (free acid; equivalent to tafamidis meglumine 80 mg)POdaily lifelongATTR-ACT (Maurer NEJM 2018; PMID 30145930) — 30% all-cause mortality reduction over 30 mo; greatest benefit NYHA I–II; less impact NYHA III
patisiran0.3 mg/kg IV every 3 weeks (premedicate with dex/H1/H2/acetaminophen)IVevery 3 weeksAPOLLO (Adams NEJM 2018; PMID 30144829) — siRNA reduces hepatic TTR production
vutrisiran25 mg SC every 3 monthsSCevery 3 monthsHELIOS-A (Adams Lancet Neurol 2023; PMID 35262029) — SC dosing convenience
daratumumab1800 mg SC weekly × 8, then biweekly × 16, then monthly (with dex + bortezomib + cyclophosphamide — D-VCd regimen)SCper ANDROMEDA scheduleANDROMEDA (Kastritis NEJM 2021; PMID 34077641) — daratumumab + CyBorD improved hematologic CR + organ response in AL
bortezomib1.3 mg/m² SC weekly (with cyclophosphamide + dexamethasone — CyBorD)SCweekly cycles per oncologyCyBorD backbone for AL (proteasome inhibition kills plasma cells); base regimen prior to ANDROMEDA daratumumab era
furosemide20–40 mg IV/PO (gentle — narrow preload window in restrictive physiology)IV/POdailyRestrictive amyloid is preload-dependent; over-diuresis precipitates hypotension/syncope; titrate carefully
midodrine5–10 mg PO TID (last dose before 6 PM to avoid supine HTN)POTIDAmyloid autonomic neuropathy → orthostasis; midodrine increases vascular tone without bradycardia

Plan: Cardiac amyloidosis ADHF — AL vs ATTR phenotype-based regimen (ESC 2023 PMID 37596926)

3. When to call your provider

Contact your care team if any of the following happen:

  • Disease progression on max DMT → advanced HF / transplant or hospice
  • New conduction disease → PPM/ICD eval

4. When to seek emergency care

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

  • AL amyloidosis (positive monoclonal screen) + Mayo cardiac stage IIIa/IIIb/IV (natural marker of fluid overload (NT-proBNP) + troponin elevated + dFLC abnormal) — oncologic emergency(life-threatening)
  • ATTR-CM diagnosed via PYP (visual grade 2–3 + H/CL ≥1.5) with negative monoclonal screen — start tafamidis 61 mg daily lifelong
  • Symptomatic hypotension or syncope after diuretic dose increase in amyloid (restrictive physiology preload-dependent)
  • Mobitz II / 2:1 AV block / complete heart block in amyloid (infiltrative conduction disease) ± syncope(life-threatening)
  • Digoxin prescribed in cardiac amyloidosis (frequently transferred patients with prior AF treatment)

6. Sources

Guideline: ESC 2023 cardiac amyloidosis position statement + ACC/AHA 2023 expert decision pathway (Kittleson) + ATTR-ACT + ANDROMEDA + APOLLO + HELIOS-A

  1. pubmed.ncbi.nlm.nih.gov/37596926
  2. pubmed.ncbi.nlm.nih.gov/30145930
  3. pubmed.ncbi.nlm.nih.gov/34077641