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Patient handout

Secondary Progressive Multiple Sclerosis

PRODUCTION

1. Your condition

This handout is for secondary progressive multiple sclerosis. Your care team identified this based on: rrms patient with insidious progression ≥6 mo independent of relapses (lublin 2014 pmid 24871874 needs_source_review).

Other reasons your team may use this plan: edss step progression confirmed at 3 + 6 mo without intervening relapse — pira; disproportionate cord/brain atrophy on annual mri — neurodegenerative pattern; worsening spasticity / neurogenic bladder / cognitive decline without relapse.

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
siponimod0.25 mg titrate to 2 mg PO daily over 6 days (CYP2C9 *1/*3 or *2/*3 → 1 mg max)POdailyEXPAND (Kappos Lancet 2018 PMID 29576505 NEEDS_SOURCE_REVIEW) — first FDA-approved DMT for active SPMS; 21% relative risk reduction in 3-mo CDP; first-dose 6-h ECG monitoring
ocrelizumab (off-label active SPMS)300 mg IV × 2 then 600 mg q6 monthsIVq6 monthsOPERA extension supports off-label use in active SPMS; OPERA PMID 28002679
cladribine (active SPMS)Weight-based 3.5 mg/kg cumulative oralPOpulsed years 1+2CLARITY extension supports active SPMS; PMID 20089960

Plan: SPMS DMT — siponimod first-line for active SPMS; symptomatic dominant for non-active (AAN 2024; EXPAND PMID 29576505)

3. When to call your provider

Contact your care team if any of the following happen:

  • Acute relapse → route to neuro.ms-flare.core.v1
  • Rapid EDSS jump → neuro + MRI urgent
  • Severe pressure injury stage III/IV → wound + admit
  • Aspiration / pulmonary decline → SLP + pulmonology
  • Refractory spasticity → intrathecal baclofen pump
  • Refractory bladder → BTX + cathter program
  • Severe depression / suicidality → ED + psych

4. When to seek emergency care

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

  • Active SPMS — relapse in past 2 y OR new T2/gad+ lesion + progression — siponimod EXPAND-eligible (PMID 29576505)
  • EDSS step progression confirmed at 3 + 6 mo without intervening relapse — PIRA (progression independent of relapse activity)

5. Follow-up

PT/OT/SLP; spasticity clinic + intrathecal baclofen pump consideration if refractory; pulmonary surveillance (FVC); palliative + advance directives at EDSS ≥7; caregiver support (AAN 2024)

6. Sources

Guideline: AAN 2024 MS DMT guideline + ECTRIMS 2024 + EXPAND siponimod (Kappos Lancet 2018 PMID 29576505)

  1. pubmed.ncbi.nlm.nih.gov/29576505
  2. pubmed.ncbi.nlm.nih.gov/28002679
  3. pubmed.ncbi.nlm.nih.gov/32757523