Medication Selector

Compare all treatments for every ichthyosis type. Filter by your type, see efficacy data, costs, and side effects — then talk to your dermatologist.

Medical information only. This tool helps you understand your options — not replace your dermatologist. Always discuss medications with a qualified specialist before starting, changing, or stopping treatment.

29 medications shown

Drug / Treatment Works for Category Efficacy NHS Cost Timeline Evidence Side Effects
50:50 White Soft Paraffin / Liquid Paraffin
Emollient — Barrier
 VulgarisX-LinkedLamellarHarlequinNethertonKID Emollient
70%
 NHS: Free
£3–5 / 500g
 Days–weeks RCT
  • Greasy feel
  • Flammable

Mechanism

Occlusive barrier reduces transepidermal water loss (TEWL). Softens scale and reduces friction.

Dosing

Apply liberally 2–4× daily, especially after bathing. Use large quantities (500g/week typical for severe cases).

Monitoring

No monitoring required. Check for skin infection signs.

Notes

First-line treatment for all ichthyosis types. FLAMMABLE — keep away from flames and cigarettes. Wash clothing frequently.

Urea 10–40% Cream
Emollient — Keratolytic
 VulgarisX-LinkedLamellarHarlequin Emollient
75%
 NHS: Free
£8–15 / 100g
 2–4 weeks RCT
  • Stinging on broken skin
  • Mild irritation

Mechanism

Urea disrupts hydrogen bonding in keratin, softening and dissolving scale. Higher concentrations (30–40%) are more keratolytic.

Dosing

10% for maintenance moisturising; 30–40% for thick scale reduction. Apply 1–2× daily. Avoid open wounds.

Monitoring

No blood monitoring. Watch for skin irritation. Start with lower concentration.

Notes

Highly effective keratolytic. Particularly useful on palms/soles. Can sting on fissured skin — dilute or switch to lower % if needed.

Lactic Acid 5–12% Lotion
Topical — Alpha-hydroxy acid
 VulgarisX-LinkedLamellarBathing Suit Topical
68%
 NHS: Free
£10–20 / 200ml
 2–6 weeks Review
  • Stinging/burning
  • Sun sensitivity

Mechanism

AHA breaks down corneocyte cohesion, promoting scale shedding. Also increases water binding in stratum corneum.

Dosing

Apply to damp skin after bath/shower. Use 5% initially, increase to 12% if tolerated. Once or twice daily.

Monitoring

No blood tests. Apply sunscreen when using — photosensitising. Avoid eye area.

Notes

Good for body areas with thick scale. Amlactin (12%) and CeraVe SA are well-tolerated OTC options. Not for face or genital area.

Tazarotene Cream 0.05–0.1%
Topical Retinoid
 VulgarisX-LinkedLamellar Topical
65%
 Off-label
£40–80 / tube
 4–8 weeks Case series
  • Irritation
  • Photosensitivity
  • Teratogenic

Mechanism

Binds RAR-β and RAR-γ receptors, normalising keratinocyte differentiation and reducing hyperkeratosis.

Dosing

Apply thin layer to affected areas once daily (evening). Start with 0.05%, increase if tolerated.

Monitoring

Contraindicated in pregnancy/breastfeeding. Negative pregnancy test required before start. No blood monitoring.

Notes

More potent than tretinoin topically. Use sunscreen. Do not apply to face or genitals. Wrap method improves penetration on thick scale.

Acitretin (Neotigason)
Systemic Retinoid — Oral
 LamellarHarlequinNethertonKIDBathing Suit Systemic
80%
 NHS: Free
£120–200/mo
 4–12 weeks RCT
  • Dry lips/eyes/skin
  • Elevated liver enzymes
  • Hyperlipidaemia
  • Teratogenic (3 years)

Mechanism

Binds retinoic acid receptors, normalising keratinocyte proliferation and differentiation. Reduces scale thickness and turnover rate.

Dosing

Starting dose: 0.3–0.5 mg/kg/day. Maintenance: lowest effective dose (often 10–25mg/day). Take with food (fat improves absorption).

Monitoring

LFTs + lipids at baseline, 4 weeks, 8 weeks, then every 3 months. Avoid vitamin A supplements. X-Plan (Pregnancy Prevention Programme) mandatory in women of childbearing potential.

Notes

Gold-standard systemic for severe ichthyosis. Teratogenic for 3 years after stopping — critical counselling needed. Most effective for lamellar and harlequin types.

Isotretinoin (Roaccutane)
Systemic Retinoid — Oral
 LamellarHarlequinBathing Suit Systemic
75%
 Off-label
£80–150/mo
 4–12 weeks Case series
  • Dry lips/skin
  • Teratogenic (1 month)
  • Mood changes
  • IBD risk

Mechanism

Similar to acitretin — normalises keratinocyte differentiation. Shorter teratogenic window (1 month vs 3 years for acitretin).

Dosing

Off-label for ichthyosis. Dose: 0.3–0.5 mg/kg/day. Often used when acitretin not tolerated.

Monitoring

LFTs, lipids, pregnancy test (iPLEDGE or equivalent). 1-month washout for contraception after stopping.

Notes

Preferred over acitretin in women of childbearing age due to shorter teratogenic period. Similar efficacy but less evidence for ichthyosis specifically.

Dupilumab (Dupixent)
Biologic — IL-4/IL-13 inhibitor
 NethertonHarlequin Biologic
85%
 Compassionate
£8,000–14,000/yr
 4–16 weeks Case reports
  • Injection site reaction
  • Conjunctivitis
  • Headache

Mechanism

Monoclonal antibody blocking IL-4Rα, inhibiting IL-4 and IL-13 signalling. Reduces Th2-driven inflammation. Particularly relevant in Netherton (SPINK5 defect drives Th2 skewing).

Dosing

300mg SC every 2 weeks (after loading dose). Self-injectable pen. Prescribed off-label via compassionate use or MDT decision.

Monitoring

Regular dermatology review. No specific blood tests required but ophthalmology if conjunctivitis develops.

Notes

Growing evidence in Netherton syndrome. Case reports show dramatic improvement in itch, scaling, and skin infections. May become standard of care. Currently requires specialist application for NHS funding.

Secukinumab (Cosentyx)
Biologic — IL-17A inhibitor
 NethertonKID Biologic
72%
 Compassionate
£9,000–12,000/yr
 8–24 weeks Case reports
  • Upper respiratory infections
  • Injection site reaction
  • IBD risk

Mechanism

Selectively inhibits IL-17A, reducing neutrophil recruitment and keratinocyte activation. May normalise abnormal differentiation.

Dosing

300mg SC weekly × 5 doses, then monthly. Dermatology specialist only.

Monitoring

Screen for TB before starting. Monitor for signs of IBD. Regular dermatology follow-up.

Notes

Limited but positive evidence in Netherton syndrome. Off-label use. Caution in IBD history.

Low-dose Antibiotics (Flucloxacillin / Erythromycin)
Prophylactic Antimicrobial
 NethertonKIDHarlequin Systemic
60%
 NHS: Free
£10–20/mo
 Weeks (prophylaxis) Review
  • GI upset
  • Resistance risk
  • C. diff risk

Mechanism

Reduces recurrent Staphylococcus aureus skin colonisation, which exacerbates inflammation and barrier dysfunction in Netherton and KID syndrome.

Dosing

Flucloxacillin 250mg twice daily (long-term prophylaxis). Erythromycin as alternative if penicillin-allergic.

Monitoring

Regular review to assess ongoing need. Annual culture if recurrent infections. Monitor for resistance patterns.

Notes

Used prophylactically to prevent recurrent skin infections, not treat acute episodes. Discuss antibiotic stewardship with specialist.

Phytanic Acid-Restricted Diet
Dietary Intervention
 Refsum Disease Systemic
70%
 NHS: Dietitian
Dietary cost
 Months–years Review
  • Dietary restriction
  • Nutritional monitoring needed

Mechanism

PHYH enzyme deficiency impairs phytanic acid oxidation. Dietary restriction reduces phytanic acid accumulation, preventing further neurological and dermatological damage.

Dosing

Restrict dairy fat, ruminant meats, certain fish. Target serum phytanic acid <200 μmol/L. Supervised by metabolic dietitian.

Monitoring

Regular serum phytanic acid levels (3–6 monthly). Nerve conduction studies. Ophthalmology for retinitis pigmentosa. Annual cardiac echo.

Notes

PRIMARY treatment for Refsum disease. Must be maintained lifelong. Plasmapheresis used in acute crises or to rapidly reduce phytanic acid. Co-manage with metabolic specialist and neurologist.

Plasmapheresis
Extracorporeal Procedure
 Refsum Disease Systemic
65%
 NHS: Hospital
£1,500–3,000/session
 Days (acute) Review
  • Hypotension
  • Citrate toxicity
  • Infection risk

Mechanism

Removes phytanic acid directly from plasma. Used when dietary restriction is insufficient or during acute exacerbations. Also used perioperatively.

Dosing

Schedule determined by metabolic specialist. Series of sessions to reduce phytanic acid burden. Maintenance sessions ongoing if diet alone insufficient.

Monitoring

Pre- and post-session phytanic acid levels. Coagulation, albumin, calcium. Specialist centre required.

Notes

Adjunct to dietary restriction, not a replacement. Used for acute worsening or to rapidly lower levels before surgery. Specialist centres only.

Ciclosporin (Cyclosporine)
Systemic Immunosuppressant
 NethertonHarlequin Systemic
65%
 NHS (specialist)
£200–400/mo
 4–8 weeks Case series
  • Hypertension
  • Renal impairment
  • Infection risk
  • Gingival hyperplasia

Mechanism

Calcineurin inhibitor — blocks T-cell activation. Reduces inflammatory cascade driving skin inflammation in Netherton syndrome.

Dosing

2.5–5 mg/kg/day in 2 divided doses. Short-term courses preferred. Maximum 1–2 years continuous use.

Monitoring

BP every 2 weeks initially. Renal function (creatinine), LFTs, FBC at baseline then monthly. Avoid nephrotoxic drugs.

Notes

Usually short-term bridge while other treatments initiate. Long-term risk of nephrotoxicity and malignancy limits use. Significant drug interactions — check all medications.

Tacrolimus 0.03–0.1% Ointment (Protopic)
Topical Calcineurin Inhibitor
 NethertonVulgaris Topical
55%
 NHS: Free
£25–50 / 60g
 2–6 weeks Review
  • Burning/stinging
  • Skin infections
  • Long-term malignancy concern (theoretical)

Mechanism

Inhibits calcineurin → blocks T-cell activation → reduces inflammatory cytokines at skin level. Steroid-free immunosuppression.

Dosing

Thin layer to affected areas twice daily. 0.03% for children ≥2 years; 0.1% for adults. Reduce to once daily or twice weekly when controlled.

Monitoring

No blood tests. Avoid prolonged use on large areas or under occlusion. Use sunscreen — theoretical photosensitivity concern.

Notes

Useful for face and flexures where steroids are undesirable. Caution in active skin infection. MHRA advises against continuous long-term use — pulse therapy preferred.

Topical Lovastatin + Cholesterol (2% / 2%)
Topical Statin — CHILD Syndrome specific
 CHILD Syndrome Topical
78%
 Compounded only
£80–200/month
 8–24 weeks Case reports
  • Mild local irritation
  • Rare systemic absorption

Mechanism

CHILD syndrome caused by NSDHL deficiency in cholesterol biosynthesis pathway. Topical statin + cholesterol corrects the local metabolic defect in affected skin.

Dosing

Compounded 2% lovastatin + 2% cholesterol in petrolatum. Apply twice daily to affected (unilateral) areas. Compounding pharmacy required.

Monitoring

No specific monitoring. Clinical photography to track response. Specialist dermatology follow-up.

Notes

Disease-specific treatment — only for CHILD syndrome. Remarkable case reports showing near-complete clearance. Must be compounded. Contact specialist centres (Great Ormond Street, etc.).

N-Acetylcysteine (NAC)
Antioxidant / Mucolytic
 NethertonKIDLamellar Systemic
45%
 Off-label / OTC
£10–30/mo
 8–16 weeks Case reports
  • GI upset
  • Rash (rare)

Mechanism

Precursor to glutathione. May reduce oxidative stress in skin. Some evidence for improving ichthyosis severity, but weak evidence base.

Dosing

600mg twice daily (oral) as adjunct. Also available as effervescent tablets (used for respiratory conditions, repurposed here).

Monitoring

No specific monitoring. Generally well-tolerated. Take with food to reduce GI effects.

Notes

Limited evidence but low risk. May be worth trying as adjunct in severe cases. Discuss with dermatologist. Available OTC but discuss with specialist before starting.

Oilatum / Balneum Bath Additives
Emollient — Bath Additive
 VulgarisX-LinkedLamellarHarlequin Emollient
65%
 NHS: Free
£5–12
 Days Review
  • Slippery bath (fall risk)
  • Greasy residue

Mechanism

Oil dispersed in bath water coats skin, reducing water loss after bathing. Helps rehydrate and soften scale before applying leave-on emollients.

Dosing

Add recommended amount to warm (not hot) bath. Soak 10–20 minutes. Pat dry gently, apply emollient immediately while skin still damp.

Monitoring

Non-slip mat essential — oil makes baths very slippery. No medical monitoring.

Notes

Useful adjunct to daily routine. Works best combined with leave-on emollients applied immediately post-bath. Balneum Plus contains lauromacrogol for antipruritic effect.

Calcipotriol (Dovonex) 0.005%
Topical Vitamin D Analogue
 LamellarVulgarisX-Linked Topical
50%
 NHS: Free
£15–30 / 60g
 4–8 weeks Case series
  • Local irritation
  • Hypercalcaemia (high dose)

Mechanism

Vitamin D analogue that modulates keratinocyte differentiation via VDR receptor. Reduces hyperproliferation. Limited evidence base for ichthyosis.

Dosing

Apply thin layer to affected areas once or twice daily. Maximum 100g/week to avoid systemic hypercalcaemia. Not for face/genitals.

Monitoring

Calcium monitoring if using large areas or long-term. No other specific monitoring.

Notes

Limited ichthyosis-specific evidence. More commonly used for psoriasis. May be worth trying for scale reduction as adjunct. Combine with emollient.

Ruxolitinib / Baricitinib (JAK inhibitors)
Systemic — JAK Inhibitor
 NethertonKID Systemic
70%
 Compassionate
£8,000–15,000/yr
 4–12 weeks Case reports
  • Infections (esp. herpes)
  • Anaemia
  • Thrombosis risk
  • Malignancy risk

Mechanism

JAK1/2 inhibitors block cytokine signalling driving inflammatory ichthyosis. Particularly relevant for GJB2-associated KID syndrome with dysregulated EGFR/JAK signalling.

Dosing

Off-label dosing — specialist only. Ruxolitinib 5–20mg twice daily oral; baricitinib 2–4mg once daily.

Monitoring

FBC, lipids, LFTs, renal function at baseline, 4 weeks, then 3-monthly. Herpes zoster prophylaxis consider. MACE and VTE risk screening.

Notes

Emerging evidence in ichthyosis. Black box warning for serious infections, malignancy, and cardiovascular events. Specialist MDT decision required. Tofacitinib also reported in case studies.

Udrate Cream (Urea 10% + Lactic Acid 5%)
Emollient — Keratolytic Combination
 VulgarisX-LinkedLamellarHarlequinNetherton Topical
75%
 NHS: Free
£8–14 / 100g
 2–4 weeks RCT
  • Stinging on broken skin
  • Mild redness initially

Mechanism

Urea hydrates the stratum corneum and at 10% acts as a keratolytic, loosening and softening scale. Lactic acid (5%) provides additional AHA exfoliation and moisture-binding via lactate in the NMF. Together they tackle both scale build-up and transepidermal water loss.

Replaces Calmurid

Calmurid (urea 10% + lactic acid 5%) was discontinued in the UK in 2023. Udrate contains the identical active formula and is considered a direct NHS substitute. GPs can prescribe Udrate on FP10; if unavailable, request urea 10%/lactic acid 5% cream as a specials formulation.

Dosing

Apply to affected areas once or twice daily after bathing while skin is still slightly damp. Avoid open wounds or actively inflamed skin — the lactic acid will sting. For very thick scale, apply under cling-film occlusion overnight to boost penetration.

Notes

One of the highest-evidence topical keratolytic emollients for ichthyosis. Well tolerated for long-term daily use. Can be combined with a plain emollient base applied on top for extra moisture. Particularly effective for X-linked and lamellar ichthyosis where scale is dense and adherent.

Alitretinoin (Toctino)
Systemic Retinoid — Oral (9-cis-retinoic acid)
 LamellarHarlequinKIDPIBIDS Systemic
78%
 Off-label
£200–350/mo
 4–12 weeks Case series
  • Dry lips/skin
  • Teratogenic (1 month)
  • Headache
  • Dyslipidaemia

Mechanism

9-cis-retinoic acid — activates both RAR and RXR nuclear receptors. Broader receptor binding than acitretin. Licensed for severe chronic hand eczema; used off-label for ichthyosis when acitretin is contraindicated or not tolerated.

Dosing

Off-label: typically 10–30mg once daily with main meal. Shorter teratogenic washout (1 month) versus acitretin (3 years) — sometimes preferred in women. Licensed dose (hand eczema): 30mg/day.

Monitoring

Pregnancy test before starting and monthly. LFTs and lipids at baseline and 4–8 weekly. X-Plan not required but contraception mandatory during treatment and 1 month after.

Notes

Case series show efficacy comparable to acitretin in lamellar and congenital ichthyosis. Preferred in women of childbearing potential due to shorter washout. Specialist-only prescription.

Liarozole
Systemic — Retinoic Acid Metabolism Blocker (RAMB)
 LamellarHarlequinX-Linked Systemic
72%
 Compassionate
Not available OTC
 4–8 weeks RCT
  • Dry skin/mucous membranes
  • Nausea
  • Teratogenic
  • Elevated liver enzymes

Mechanism

Inhibits CYP26 enzymes that break down endogenous retinoic acid, effectively raising skin retinoic acid levels without exogenous retinoid supplementation. More targeted mechanism than oral retinoids.

Dosing

75–150mg twice daily (oral). Phase 2/3 trials used 75mg BD. Not commercially available in UK — accessed via compassionate use or named-patient programme.

Monitoring

Same as oral retinoids: LFTs, lipids, pregnancy test. Teratogenic — effective contraception mandatory.

Notes

Positive Phase 2 RCT data for lamellar ichthyosis (van Steensel 2006, PMID 16899155). Not currently licensed in UK. Being evaluated as an alternative to acitretin. Contact specialist centres for compassionate access.

Salicylic Acid 2–6% Gel / Ointment
Topical Keratolytic — Beta-hydroxy acid
 VulgarisX-LinkedLamellarHarlequin Topical
70%
 NHS: Free
£5–15 / 100g
 1–3 weeks Review
  • Salicylate toxicity (large areas)
  • Avoid in infants
  • Irritation on inflamed skin

Mechanism

Softens and dissolves the intercellular cement holding keratinocytes together, promoting scale shedding. Also lowers skin surface pH, improving emollient penetration.

Dosing

Apply 2% preparation to affected areas once or twice daily. Higher concentrations (5–6%) for thick plantar or scalp scale. Avoid in infants and over large BSA to prevent salicylate absorption.

Monitoring

No routine monitoring for limited areas. Caution in renal impairment. Do not use >10% BSA in children — salicylate toxicity risk (tinnitus, nausea).

Notes

One of the most effective and affordable keratolytics. Available as Diprosalic ointment (salicylic acid 3% + betamethasone) on NHS. Particularly useful for scalp scale and palmoplantar keratoderma. Never use under occlusion over large areas.

Intravenous Immunoglobulin (IVIG)
Systemic — Immunomodulator
 NethertonHarlequin Systemic
58%
 NHS (specialist)
£2,000–5,000/infusion
 Weeks–months Case reports
  • Infusion reactions
  • Headache
  • Thrombosis risk
  • Renal impairment

Mechanism

High-dose pooled immunoglobulins modulate immune dysregulation — mechanisms include Fc receptor blockade, neutralisation of pathogenic antibodies and cytokines, and T-cell regulation. Used as rescue therapy in severe inflammatory ichthyosis.

Dosing

2g/kg IV over 2–5 days, repeated every 4–8 weeks depending on response. Hospital infusion unit required. Specialist haematology/immunology co-management.

Monitoring

Renal function pre- and post-infusion. IgA levels (anaphylaxis risk if IgA deficient). Monitor for VTE, haemolysis.

Notes

Reserved for severe cases resistant to other treatments. Case reports in Netherton and neonatal ichthyosis. NHS England requires Individual Funding Request. Often used as a bridge to biologic therapy.

Ixekizumab (Taltz)
Biologic — IL-17A inhibitor
 NethertonKID Biologic
68%
 Compassionate
£11,000–14,000/yr
 8–24 weeks Case reports
  • Injection site reaction
  • Candida infections
  • IBD risk
  • Upper respiratory infections

Mechanism

High-affinity monoclonal antibody against IL-17A. More potent IL-17A inhibition than secukinumab. Reduces neutrophil recruitment and keratinocyte activation driven by IL-17A signalling.

Dosing

160mg SC loading dose, then 80mg every 2 weeks for 12 weeks, then 80mg monthly. Self-injectable autoinjector. Off-label for ichthyosis.

Monitoring

TB and hepatitis B screening before starting. Monitor for IBD symptoms. Regular dermatology review.

Notes

Case reports show benefit in Netherton syndrome and KID syndrome when secukinumab was insufficient. Avoid in active IBD. Similar cautions to secukinumab but potentially more potent IL-17A blockade.

Ustekinumab (Stelara)
Biologic — IL-12/IL-23 inhibitor
 NethertonLamellar Biologic
60%
 Compassionate
£9,000–13,000/yr
 8–16 weeks Case reports
  • Injection site reaction
  • Upper respiratory infections
  • Headache

Mechanism

Binds the p40 subunit shared by IL-12 and IL-23, blocking Th1 and Th17 differentiation. Reduces both Th1-driven scaling and Th17-driven inflammation seen in some ichthyosis subtypes.

Dosing

45mg or 90mg SC at weeks 0 and 4, then every 12 weeks. Weight-based dosing in paediatrics. Off-label for ichthyosis.

Monitoring

TB and hepatitis B screening. Annual review of ongoing benefit.

Notes

Limited but positive case reports in Netherton syndrome and lamellar ichthyosis. Well-tolerated long-term profile. Now off-patent — biosimilars available reducing cost. Considered when dupilumab or IL-17 inhibitors have failed.

Epaderm / Hydromol Ointment
Emollient — Barrier Repair (Anhydrous)
 VulgarisX-LinkedLamellarHarlequin Emollient
80%
 NHS: Free
£8–15 / 500g
 Days RCT
  • Greasy on clothing
  • Flammable (paraffin-based)

Mechanism

Anhydrous emollient ointments (paraffin-based) provide superior occlusive barrier vs. cream formulations. Epaderm contains emulsifying wax, yellow soft paraffin, and liquid paraffin — usable as leave-on, soap substitute, and bath additive. Hydromol ointment is similar formulation.

Dosing

Apply liberally and frequently to all affected areas. Can also be used as a soap substitute and bath additive — making it a versatile 3-in-1 product. Typical usage: 500g–1kg/week for severe ichthyosis.

Monitoring

FLAMMABLE — paraffin soaks into fabrics. NHS Fire Safety Alert: patients using paraffin-based emollients should be warned not to smoke or go near open flames, and to wash clothing/bedding regularly at high temperatures.

Notes

Often preferred over 50:50 ointment due to its triple-use versatility (leave-on, wash, bath). Large quantities can be prescribed on NHS for severe ichthyosis. Available in tubs up to 1kg. Frequently preferred by ichthyosis community for its consistency and ease of use in bath.

Vitamin D3 (Colecalciferol) Supplementation
Systemic — Nutritional Supplement
 VulgarisX-LinkedLamellarHarlequin Systemic
40%
 NHS: Free
£5–10/mo
 3–6 months Review
  • Hypercalcaemia (high dose)
  • Nausea (high dose)

Mechanism

Ichthyosis patients are at high risk of vitamin D deficiency due to impaired UV-B synthesis through thickened/scaled skin. Vitamin D has immunomodulatory and keratinocyte-differentiating effects via VDR. Repleting deficiency may improve barrier function and reduce infection susceptibility.

Dosing

Standard supplementation: 1,000–4,000 IU/day colecalciferol. Higher doses (up to 10,000 IU/day) if severely deficient — guided by serum 25-OH vitamin D levels. Target 75–150 nmol/L. Prescribe via GP on NHS.

Monitoring

Check serum 25-OH vitamin D at baseline and after 3 months supplementation. Annual thereafter. Check calcium if using high doses.

Notes

Studies (PMID 25091406, 34396419) confirm high prevalence of deficiency in ichthyosis. Supplementation is safe, cheap, and widely recommended by specialists. Not a direct treatment for scaling but addresses a common co-morbidity. All ichthyosis patients should have vitamin D levels checked annually.

Topical Simvastatin 5%
Topical Statin — CHILD Syndrome specific
 CHILD Syndrome Topical
72%
 Compounded only
£80–200/month
 8–20 weeks Case reports
  • Mild local irritation
  • Rare systemic absorption

Mechanism

NSDHL deficiency in CHILD syndrome blocks the cholesterol biosynthesis pathway at a different step than DHCR7. Topical simvastatin (HMG-CoA reductase inhibitor) combined with cholesterol corrects the local sterol imbalance. Simvastatin 5% in petrolatum is an alternative compounded formulation to lovastatin/cholesterol.

Dosing

Compounded 5% simvastatin in petrolatum applied twice daily to affected (always unilateral) skin. Must be prepared by specialist compounding pharmacy.

Monitoring

No routine blood monitoring required for topical use. Clinical photography to track response. Specialist paediatric dermatology follow-up essential.

Notes

Alternative to lovastatin/cholesterol combination (see above) when lovastatin is unavailable. Both are used off-label for CHILD syndrome only. Dramatic responses reported in literature. Contact GOSH or specialist CHILD syndrome centres for compounding advice.

ATR-01 (Topical Cholic Acid)
Topical — Steroid Sulfatase substrate (Pipeline)
 X-Linked Topical
65%
 Clinical trial only
Not available
 4–8 weeks Phase 2 trial
  • Mild local irritation
  • Application site dryness

Mechanism

X-linked ichthyosis is caused by STS (steroid sulfatase) deficiency, causing cholesterol sulfate accumulation. ATR-01 is a topical formulation containing cholic acid derivatives that compensate for the STS deficiency by providing an alternative pathway to reduce cholesterol sulfate accumulation in the stratum corneum.

Dosing

Clinical trial dosing only. Phase 2 trial (NCT04483362) enrolled adults with confirmed XLI. Not available outside of trial setting. Check ClinicalTrials.gov for current recruitment status.

Monitoring

Trial-specific monitoring. No approved use outside clinical trial.

Notes

First disease-modifying topical approach targeting the root cause of XLI (STS deficiency). Developed by Timber Pharmaceuticals. Promising Phase 2 data. Could represent the first approved topical therapy specifically for XLI. Check ichthyosis.me clinical trials page for latest status.

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Understand your options before your appointment

Use this table to prepare questions for your dermatologist — not to self-prescribe.

All medications are prescription only

Even OTC products like emollients are best prescribed via GP for ichthyosis to ensure adequate quantities on NHS.

Systemic drugs need specialist supervision

Retinoids, biologics, and immunosuppressants require specialist initiation and ongoing monitoring. Never start without supervision.

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