Weight Loss with Castleman Disease in South Africa

Castleman disease is one of the rarest conditions you may encounter in South Africa — yet in a country with a high burden of HIV and HHV-8 (human herpesvirus 8), it is more prevalent here than in many other parts of the world. This lymph node disorder causes severe systemic inflammation that can ravage body weight and nutritional status, leaving patients struggling not with excess weight but with dangerous muscle and fat wasting.

This guide covers what happens to body weight with Castleman disease, how to eat well when IL-6-driven cachexia is stealing your nutrition, and what to do when corticosteroids swing the pendulum in the other direction.

Castleman disease is a complex, rare condition requiring specialist haematology or oncology care. This article is for information only — all treatment decisions must involve your specialist team.

Understanding Castleman Disease: Two Very Different Forms

Castleman disease is not one single condition. It is a group of disorders united by abnormal lymph node enlargement and excessive cytokine activity — particularly interleukin-6 (IL-6). The two main forms have very different implications for body weight and nutrition:

Unicentric Castleman Disease (UCD)

• Single enlarged lymph node or lymph node cluster in one region
• Often discovered incidentally on scans done for other reasons
• Typically treated with surgical excision — frequently curative
• Systemic symptoms are usually mild; weight loss is uncommon
• Post-surgical recovery nutrition is the main dietary focus

Multicentric Castleman Disease (MCD)

• Widespread lymph node involvement across multiple regions
• Driven by excessive IL-6; causes severe systemic inflammation
• Symptoms: high fevers, drenching night sweats, extreme fatigue, weight loss, anaemia, enlarged spleen and liver, peripheral oedema
• Two subtypes in SA: HHV-8 positive MCD (strongly associated with HIV co-infection) and HHV-8 negative / idiopathic MCD (iMCD)
• Life-threatening if untreated; requires systemic therapy

The South African Context: HHV-8 and HIV

South Africa has one of the world's highest HIV prevalence rates. HHV-8 — which is transmitted through saliva and sexual contact — infects up to 40–50% of HIV-positive individuals in sub-Saharan Africa. When HHV-8 infects lymph nodes in a person with HIV-related immune suppression, it can trigger HHV-8-associated MCD.

Key points for SA patients:

• HHV-8-associated MCD typically presents in HIV-positive individuals, often with a CD4 count below 200 cells/µL
• It can co-occur with Kaposi's sarcoma (also HHV-8 driven)
• Antiretroviral therapy (ART) is essential and must be optimised — viral suppression reduces HHV-8 replication
• Rituximab (anti-CD20) is the preferred treatment for HHV-8-positive MCD in HIV+ patients; available at most academic hospitals and on ART programme
• Weight loss in this context is often multi-factorial: MCD cachexia + HIV wasting syndrome + opportunistic infections

Why Castleman Disease Causes Weight Loss

In MCD, the lymph nodes produce massive amounts of IL-6, which dysregulates nearly every metabolic pathway:

• Cytokine-driven anorexia: IL-6 suppresses appetite centres in the hypothalamus — food becomes unappealing even when the body desperately needs calories
• Muscle catabolism: IL-6 activates ubiquitin-proteasome pathways that break down skeletal muscle protein for fuel, independent of calorie intake
• Elevated resting energy expenditure: Chronic fever and systemic inflammation raise the number of calories the body burns at rest
• Anaemia: Inflammatory anaemia (anaemia of chronic disease) reduces oxygen delivery to muscles, causing fatigue that limits physical activity and food preparation
• Night sweats: Repeated drenching night sweats increase calorie expenditure and disrupt restorative sleep, worsening fatigue and appetite

The result is inflammatory cachexia — a form of wasting that cannot be fully reversed by eating more alone, because the underlying cytokine storm must be controlled first. This is why treating the disease (with siltuximab or rituximab) is the most powerful nutritional intervention.

Nutrition in Active MCD: Preventing Cachexia

During active MCD, the nutrition goal shifts from weight loss to weight preservation and nutritional rescue. For most patients in this phase, the challenge is eating enough — not eating less.

Calorie Density First

When appetite is suppressed by IL-6, every bite must count. Focus on calorie-dense foods at small volume:

• Avocado: 160 kcal per 100 g; mash onto bread or add to smoothies. South African avocados are excellent quality and relatively affordable at R5–R15 each
• Nut butters: Peanut, almond, or cashew butter — R50–R120 per 400 g jar; add to porridge, fruit, or toast
• Full-cream dairy: Full-cream yoghurt, amasi, or maas; fortified with honey or banana for extra calories
• Olive oil or coconut oil: Drizzle onto cooked food, soups, and vegetables to add calories without volume
• Eggs: Easy to prepare in many ways, complete protein, affordable at R30–R50 per dozen

Protein Targets

Aim for 1.2–1.5 g of protein per kg body weight per day to slow muscle catabolism. Distribute protein across 4–5 small meals rather than 2–3 large ones — this is better tolerated when appetite is poor and maximises muscle protein synthesis per meal.

Anti-Inflammatory Support

While food cannot replace siltuximab or rituximab, some dietary choices may modestly reduce IL-6 activity:

• Omega-3 fatty acids from oily fish (pilchards, sardines, snoek, salmon)
• Turmeric (curcumin) — add to food or golden milk; modest IL-6 inhibitory activity in studies
• Rooibos tea — quercetin content; anti-inflammatory and caffeine-free
• Avoid: excess alcohol (worsens inflammation), processed meats, deep-fried foods

Nutrition During Remission: Managing Steroid Weight Gain

Once MCD is controlled — either post-surgery (UCD) or with systemic therapy — some patients are maintained on corticosteroids or have gained significant weight during treatment. The approach here mirrors other steroid-related conditions:

• Low sodium diet (under 2,000 mg/day) to reduce fluid retention
• Low-GI carbohydrates: oats, sweet potato, brown rice, lentils
• Continue high protein intake to protect muscle during weight loss
• Aim for 0.3–0.5 kg/week fat loss — avoid aggressive restriction
• Monitor blood glucose — steroid-induced diabetes is common

Exercise with Castleman Disease

During active MCD, significant fatigue, anaemia, and systemic illness mean that formal exercise is usually not appropriate. The focus should be on maintaining basic mobility and preventing deconditioning:

• Gentle walks (5–10 minutes, 1–2 times daily) as tolerated
• Light stretching and range-of-motion exercises
• Seated chair exercises for very deconditioned patients

During stable remission, gradually reintroduce moderate aerobic activity (walking, swimming, cycling) and light resistance training. Work with a physiotherapist to set a graded return-to-exercise programme. Many SA government hospitals have physiotherapy outpatient departments that provide this service at low or no cost.

Treatment and Costs in South Africa

Treatment depends on Castleman disease subtype:

• Surgical excision (UCD): Cost varies widely — from R15,000–R50,000+ in private hospitals; covered by medical aids under surgical PMBs
• Rituximab (HHV-8-positive MCD): R15,000–R40,000 per infusion; given at academic hospitals on HIV programmes; sometimes available through the public sector ARV programme
• Siltuximab / Sylvant (iMCD): R40,000–R80,000+ per infusion every 3 weeks; one of the most expensive treatments in SA — requires specialist medical aid motivation or compassionate access application to Johnson & Johnson
• Corticosteroids (bridging therapy): Prednisone R30–R100/month
• Tocilizumab (off-label IL-6 receptor blockade): R8,000–R20,000 per infusion — sometimes used where siltuximab is inaccessible

Mental Health and Support

Castleman disease — especially MCD — is frightening. It is rare enough that many South African GPs will never have seen a case, which often means a lengthy diagnostic journey. The uncertainty, the expense of treatment, and the physical debilitation create significant psychological burden.

• CANSA (Cancer Association of South Africa): cansa.org.za — 0800 22 6622 (toll-free); support for rare lymphoproliferative conditions
• Castleman Disease Collaborative Network (CDCN): cdcn.org — international patient registry and research; patient community forums
• SADAG: sadag.org — 0800 21 22 23; mental health support during chronic illness
• ADSA: adsa.org.za — registered dietitians experienced in oncology and chronic inflammatory conditions

Related Reading

• Weight Loss with Systemic Mastocytosis in South Africa
• Weight Loss with Hemochromatosis in South Africa
• Anti-Inflammatory Diet in South Africa
• Weight Loss with Myositis in South Africa