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Patient handout

ADHF in Fabry cardiomyopathy

PRODUCTION

1. Your condition

This handout is for adhf in fabry cardiomyopathy. Your care team identified this based on: concentric lvh on echo without htn history, especially male age 25-50 or female with family history.

Other reasons your team may use this plan: lvh + proteinuria + neuropathic pain (acroparesthesia) or angiokeratomas → fabry screen; cardiac mri basal inferolateral mid-wall lge + low native t1 (<950 ms at 1.5t) — fabry signature; family history of unexplained cardiomyopathy, renal failure, or stroke (x-linked inheritance pattern).

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
agalsidase beta1 mg/kg IV every 2 weeks (premedicate with antihistamine + acetaminophen for infusion reaction prevention)IVevery 2 weeks lifelongFOS + Fabry Registry — slows progression of LV mass + eGFR decline + neuropathic pain; agalsidase beta (Fabrazyme) is US/EU standard
agalsidase alfa0.2 mg/kg IV every 2 weeks (Replagal — outside US)IVevery 2 weeks lifelongFOS — alternative ERT formulation; equivalent clinical efficacy in observational data
migalastat123 mg PO every other day (fasting state)POevery other day lifelongATTRACT (Hughes JMG 2017; PMID 27114250) — non-inferior to ERT in patients with amenable mutations (~35-50% of GLA variants); check amenability via FDA-approved in vitro assay before initiation
furosemide20-40 mg IV (diuretic-naive starting per DOSE PMID 21366472)IVq12h with reassessmentStandard ADHF; gentle in Fabry HFpEF restrictive physiology — narrow preload window
carvedilol3.125 mg PO BID, titrate q2wk to max toleratedPOBIDGDMT 4-pillar for residual HFrEF; CAPRICORN PMID 11356436
sacubitril/valsartan24/26 mg PO BID, titrate to 97/103 mg BIDPOBIDGDMT 4-pillar; PARADIGM-HF; PIONEER-HF in-hospital initiation PMID 30403955
spironolactone25 mg PO daily, titrate to 50 mg if K + creatinine permitPOdailyGDMT 4-pillar; RALES + EMPHASIS-HF
empagliflozin10 mg PO dailyPOdailyGDMT 4-pillar; EMPEROR-Reduced + EMPEROR-Preserved + EMPULSE PMID 35347356
warfarin5 mg PO daily, INR target 2-3POdailyFabry atrial myopathy → low CHA2DS2-VASc threshold for AC; warfarin or DOAC per individual choice (DOACs first-line for nonvalvular AF)
apixaban5 mg PO BID (or 2.5 mg BID per dose-reduction criteria)POBIDDOAC first-line for nonvalvular AF in Fabry; preferred over warfarin per AHA/ACC/HRS 2023 AF guideline

Plan: Fabry cardiomyopathy ADHF — disease-modifying therapy phenotype (ESC 2023 cardiomyopathies PMID 37622666 + FOS/Fabry Registry + ATTRACT PMID 27114250)

3. When to call your provider

Contact your care team if any of the following happen:

  • Disease progression on max DMT → advanced HF / transplant evaluation
  • New conduction disease → PPM/ICD eval per HRS 2017
  • New stroke → TEE for intracardiac thrombus + AC reassessment

4. When to seek emergency care

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

  • Pediatric Fabry case OR newly diagnosed adult triggers cascade screening of family (X-linked: mother of male is obligate carrier; all daughters of males obligate carriers; sons of females 50% affected)
  • Fabry cardiomyopathy with EF <35 + sustained VT despite ≥3 mo the four foundational heart-failure medications + ERT/migalastat OR extensive LGE on CMR (>15% LV mass per ESC 2022 VA emerging consensus)(life-threatening)
  • Acute infusion reaction during ERT (chills, fever, urticaria, dyspnea, hypotension) — most common in first months of agalsidase beta
  • Mobitz II / 2:1 AV block / complete heart block in Fabry (infiltrative conduction disease) ± syncope(life-threatening)

5. Follow-up

Lifelong ERT or chaperone therapy; the four foundational heart-failure medications for residual HFrEF; ICD per HRS 2017 / ESC 2022 VA if EF <35 + sustained VT or extensive LGE; family screening cascade; multidisciplinary lysosomal storage disease center

6. Sources

Guideline: ESC 2023 cardiomyopathies guideline (PMID 37622666) + Fabry Outcome Survey (FOS) + Fabry Registry + ATTRACT migalastat (PMID 27114250) + ACMG 2018 Fabry genetic testing + HRS 2017 SCD prevention (PMID 28219760)

  1. pubmed.ncbi.nlm.nih.gov/37622666
  2. pubmed.ncbi.nlm.nih.gov/27114250
  3. pubmed.ncbi.nlm.nih.gov/24875668