Fueling the Fight: Nutrition and Physical Recovery After SJS/TEN

Recovery from Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) does not end when the skin stops blistering. For many survivors, the weeks and months after hospitalization are defined by rebuilding strength, healing wounds, and restoring physical function. Two pillars of this recovery, nutrition and physical rehabilitation, are often under-discussed, yet they are central to healing.

This post explores what research and clinical guidance tell us about how food, nutrients, and movement support recovery after SJS/TEN, and why these elements matter just as much as medications and wound care.

Why Nutrition Matters So Much After SJS/TEN

SJS and TEN cause extensive skin and mucosal loss, triggering a hypermetabolic, catabolic state similar to severe burns. The body rapidly loses protein, fluids, and electrolytes while simultaneously needing large amounts of energy and nutrients to rebuild damaged tissue.

A multicenter review by Graves et al. (2016) emphasized that patients with TEN often experience:

·       Profound protein losses through open skin and wounds

·       Increased energy expenditure

·       High risk of malnutrition without early and aggressive nutrition support

Inadequate nutrition during the acute and recovery phases has been associated with delayed wound healing, increased infection risk, and prolonged hospital stays.

Calories and Protein: The Foundation of Healing

Multiple studies highlight high-calorie, high-protein intake as essential in SJS/TEN recovery.

·       Coss-Bu et al. (1997) demonstrated that patients with TEN have significantly elevated energy and nitrogen requirements, similar to patients with large-area burns. Without sufficient calories and protein, patients enter negative nitrogen balance, impairing skin regeneration and immune function.

·       Gingeri et al. (2019) reinforced that early nutritional intervention, preferably enteral feeding when oral intake is limited, supports faster epithelialization and overall recovery.

Protein is particularly critical. It supports:

·       New skin formation

·       Immune defense

·       Muscle mass preservation

In practical terms, many patients require protein intake well above typical daily recommendations, often guided by a registered dietitian.

Micronutrients and Wound Healing

Beyond calories and protein, specific vitamins and minerals play key roles in recovery.

According to Eating Well for Wound Healing from Alberta Health Services:

·       Vitamin C supports collagen formation and immune function

·       Vitamin A assists with skin repair and epithelialization

·       Zinc is essential for cell growth and wound closure

·       Iron supports oxygen delivery to healing tissues

Deficiencies in these nutrients can slow healing and worsen fatigue, which are both common challenges for SJS/TEN survivors. While supplementation may be helpful in some cases, guidance from a healthcare professional is important to avoid excess intake or interactions.

When Eating Is Hard

Many people recovering from SJS/TEN struggle with:

·       Painful oral or esophageal involvement

·       Altered taste

·       Dry mouth

·       Gastrointestinal symptoms

The multicenter review by Graves et al. (2016) notes that enteral nutrition (tube feeding) should be initiated early when oral intake is insufficient. Even during later recovery, strategies such as:

·       Soft or blended foods

·       Small, frequent meals

·       High-calorie oral nutrition supplements

can help meet nutritional needs without overwhelming the patient.

Physical Recovery: More Than Just Rest

Prolonged hospitalization, bed rest, and systemic inflammation often lead to muscle wasting, joint stiffness, and functional decline after SJS/TEN.

A 2024 case report by Kumar highlighted the benefits of early mobilization and functional training in a patient recovering from SJS. The report demonstrated that:

·       Gradual, supervised movement improved strength and endurance

·       Early physiotherapy reduced long-term disability

·       Functional training supported faster reintegration into daily activities

Importantly, rehabilitation was tailored to the patient’s pain levels and skin healing status, emphasizing safety and pacing.

The Role of Physiotherapy and Gentle Movement

Physical rehabilitation after SJS/TEN may include:

·       Range-of-motion exercises to prevent contractures

·       Progressive strengthening to rebuild muscle

·       Balance and endurance training

·       Functional tasks such as walking, stair climbing, and self-care activities

Even short periods of movement, when medically safe, can help counteract deconditioning. For many survivors, working with a physiotherapist familiar with burn or dermatologic injury recovery can be transformative.

Recovery Is Not One-Size-Fits-All

The nutritional and physical needs of someone recovering from SJS differ widely depending on:

·       Extent of skin involvement

·       Presence of mucosal or gastrointestinal injury

·       Age and pre-illness health

·       Ongoing complications or chronic sequelae

What the literature consistently emphasizes is the importance of multidisciplinary care that involves dietitians, physiotherapists, physicians, and nurses to support holistic recovery.

The Takeaway

Healing after SJS/TEN requires far more than time. Adequate nutrition fuels skin repair, immune recovery, and strength. Thoughtful physical rehabilitation restores function, independence, and confidence.

For survivors, caregivers, and clinicians alike, recognizing nutrition and movement as core components of recovery can make a meaningful difference in long-term outcomes.

The fight doesn’t end when the rash fades. Recovery is an active process, and the body needs fuel and movement to truly heal.

References

1.       Graves C, Faraklas I, Maniatis K, Panter E, La Force J, Aleem R, Zavala S, Albrecht M, Edwards P, Cochran A. Nutrition in toxic epidermal necrolysis: a multicenter review. Nutrition in Clinical Practice. 2016 Dec;31(6):836-40.

2.       Alberta Health Services. Eating Well for Wound Healing [Internet]. Alberta Health Services; 2017. Available from: https://www.albertahealthservices.ca/assets/info/nutrition/if-nfs-eating-well-for-wound-healing.pdf

3.       Kumar N. Early mobilization and functional training for early recovery after Stevens–Johnson syndrome: a case report. J Res Sports Rehabil. 2025 Dec;12(4): 143-147. doi:10.30476/jrsr.2024.98221.1353

4.       Coss‐Bu JA, Jefferson LS, Levy ML, Walding D, David Y, Klish WJ. Nutrition requirements in patients with toxic epidermal necrolysis. Nutrition in clinical practice. 1997 Apr;12(2):81-4.

5.       Gingeri C, Devi A, Qurathulain, Raj E. Nutritional management in Stevens–Johnson syndrome. IP J Nutr Metab Health Sci. 2019;2(1):20–22. doi:10.18231/j.ijnmhs.2019.005