1. Weaning & De‐escalation of Intensive Therapies

Once epidermal healing begins and systemic inflammation subsides, it is critical to apply objective physiologic criteria to step down ventilatory support and taper immunomodulators safely, balancing the risks of prolonged therapy with the potential for disease relapse.

A. Criteria for Weaning Mechanical Ventilation

• Daily Spontaneous Breathing Trial (SBT) should be considered when the following criteria are met:
  • PaO₂/FiO₂ ratio ≥ 200 on PEEP ≤ 5 cm H₂O and FiO₂ ≤ 40%
  • Hemodynamic stability without escalating vasopressor requirements
  • Minimal secretions and an effective cough, despite expected mucositis
  • Adequate mental status to protect the airway
• Progress from controlled modes to Pressure Support Ventilation (PSV):
  • Target an inspiratory pressure <10 cm H₂O while maintaining a tidal volume ≥6 mL/kg of ideal body weight.
  • Monitor tolerance with transcutaneous CO₂ monitoring and periodic arterial blood gases.
• Extubation is appropriate once airway patency, effective secretion clearance, and neurologic alertness are assured.

B. Tapering Immunosuppressive Agents Safely

Initiate tapering after 48–72 hours without the appearance of new lesions. The goal is to balance the risk of relapse against the significant side effects of prolonged immunosuppression.

• Corticosteroids: Continue pulse dose (e.g., methylprednisolone 1–2 mg/kg/day IV) until blister formation has completely ceased. Then, reduce the total daily dose by approximately 20% every 48 hours, closely monitoring for glucose intolerance, hypertension, and mood changes.
• Cyclosporine: Transition to oral therapy at 3–5 mg/kg/day divided twice daily, aiming for trough levels of 100–200 ng/mL. As re‐epithelialization progresses, decrease the dose by 0.5 mg/kg every 3–5 days, with vigilant monitoring of renal function and blood pressure.
• IVIG/Biologics: These agents do not typically require a taper. For example, IVIG is given as a single course, and biologics like etanercept (0.8 mg/kg SC weekly) can be discontinued once wounds are closed.

C. Step‐Down Monitoring & Escalation Triggers

As therapies are weaned, intensified monitoring is crucial to detect early signs of deterioration.

• Monitor vital signs every 4 hours, inspect skin and mucosa each nursing shift, and obtain daily labs (CBC, renal panel, liver function, CRP).
• Escalate care immediately if:
  • New targetoid lesions or bullae appear.
  • Fever > 38.5 °C develops without a clear alternative source.
  • Creatinine rises > 0.3 mg/dL or new significant electrolyte derangements occur.
  • Hemodynamic instability necessitates the initiation or increase of vasopressors.

2. IV-to-Enteral Medication Conversion

As gastrointestinal function normalizes, it is essential to transition systemic agents to enteral routes. This process requires careful dose adjustments to account for oral bioavailability and consideration of drug compatibility with feeding tubes.

A. Dosing Equivalencies & Bioavailability Concerns

B. Enteral Access Devices & Compatibility

• Choose nasogastric (NG) tubes for short-term use and consider percutaneous endoscopic gastrostomy (PEG) tubes for anticipated needs >4 weeks.
• Prefer silicone or small-bore tubes to minimize trauma to healing oropharyngeal mucosa.
• Crush immediate-release tablets into a fine powder. Never crush extended-release (ER), sustained-release (SR), or enteric-coated formulations.
• Flush the tube with 15–30 mL of water before and after each medication administration to ensure delivery and prevent clogging.

C. Monitoring Therapeutic Effectiveness

• Cyclosporine: Continue to monitor trough levels (target 100–200 ng/mL) after conversion and adjust the oral dose accordingly.
• Corticosteroids: Monitor inflammatory markers (e.g., CRP), temperature, and hemodynamics for signs of therapeutic failure.
• Opioids: Track pain scores and total daily opioid consumption. If pain is uncontrolled, consider malabsorption and provide a temporary IV rescue dose while reassessing GI motility or tube patency.

3. Post-ICU Syndrome (PICS) Mitigation

Patients recovering from SJS/TEN are at extremely high risk for PICS. Early identification and proactive implementation of the ABCDEF bundle and structured mobilization are crucial to reducing long-term physical, cognitive, and psychiatric sequelae.

A. Identification of High-Risk Patients

• Key risk factors include: mechanical ventilation >7 days, high cumulative doses of opioids or corticosteroids, and the presence of ICU delirium.
• Use validated screening tools such as the CAM-ICU for delirium and the ICU Mobility Scale to establish a baseline and track functional progress.

B. The ABCDEF Bundle

The ABCDEF bundle is a proven, evidence-based strategy to improve ICU outcomes, including survival, and reduce delirium and weakness.

C. Early Mobilization & Physical Therapy Protocols

• Initiate within 48 hours of ICU admission if the patient is hemodynamically stable.
• Progress through functional milestones: passive range of motion → active range of motion → sitting balance → standing → ambulation.
• Use pressure-relieving surfaces and non-adherent, protective dressings to prevent shear injuries and skin tears during movement.

4. Medication Reconciliation & Discharge Counseling

The cornerstone of safe discharge is preventing re‐exposure to the culprit drug. This requires meticulous medication reconciliation, robust patient education, and clear handoff communication to all outpatient providers.

A. Comprehensive Drug-Allergy Histories

• Document all medications taken in the 8 weeks prior to symptom onset, including prescriptions, over-the-counter drugs, and herbal supplements.
• Apply a validated causality tool, such as the ALDEN algorithm, to systematically assign causality scores for all suspected agents.
• Explicitly list and document known cross-reactive drug classes (e.g., aromatic anticonvulsants, sulfonamide antibiotics).

B. Patient-Centered Education & MedicAlert Use

• Provide the patient and caregivers with a concise, clearly written list of the confirmed offending agent(s) and any related drugs to avoid for life.
• Strongly encourage enrollment in a MedicAlert service and obtaining a bracelet or wallet card that details the specific drug allergy and reaction type.
• Involve caregivers in all teaching sessions to reinforce avoidance strategies and ensure understanding.

C. Communication with Primary & Specialist Teams

A structured discharge summary is essential to prevent prescribing errors. It should clearly include:

• Patient identifiers and final diagnosis (SJS, TEN, or SJS/TEN overlap).
• The confirmed culprit drug(s) and a list of cross-reactive classes to be avoided.
• A detailed schedule for tapering any remaining immunosuppressants.
• Specific instructions for ongoing wound, oral, and ocular care.
• All scheduled follow-up appointments with dermatology, ophthalmology, and other relevant specialists.
• Information on how the event was reported for pharmacovigilance purposes.

5. Long-Term Follow-Up & Surveillance

Recovery from SJS/TEN extends far beyond hospital discharge. Coordinated, multidisciplinary outpatient care is necessary to monitor for and manage chronic cutaneous, ocular, and psychological sequelae, while also assessing quality-of-life and functional recovery.

A. Dermatology & Ophthalmology Clinics

• The first outpatient visit should occur within 2–4 weeks of discharge.
• Dermatology: Monitor for post-inflammatory hyperpigmentation, scarring, and nail dystrophy. Consider topical retinoids or laser therapy for severe dyspigmentation.
• Ophthalmology: This is a critical, non-negotiable follow-up. Assess for chronic dry eye (sicca syndrome), symblepharon (adhesions), and corneal ulceration. Management includes aggressive lubrication, topical steroids, and potential surgical interventions.

B. Psychological & Social Support Referrals

• Systematically screen for mental health sequelae using validated tools (e.g., PHQ-9 for depression, GAD-7 for anxiety, PCL-5 for PTSD).
• Provide warm handoffs and referrals to psychology or psychiatry for cognitive behavioral therapy (CBT) or pharmacotherapy as indicated.
• Involve social work to address ongoing needs related to finances, housing, and caregiver support.

C. Monitoring Chronic Sequelae & Quality-of-Life

• Utilize patient-reported outcome measures like the Dermatology Life Quality Index (DLQI) and EQ-5D at 3 and 6 months post-discharge to track recovery from the patient’s perspective.
• Address chronic pain, a common sequela, with multimodal analgesia, physical therapy, and rehabilitation programs.
• Facilitate connections to SJS/TEN survivor support groups, which provide invaluable peer education and emotional support.