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Treatment Basics#

Medical Disclaimer

This guide is for informational purposes only. It is not medical advice. Read the full disclaimer.

DH treatment has two pillars: a gluten-free diet (GFD) that addresses the underlying disease, and dapsone that provides rapid symptom relief while the diet takes effect. Most patients use both initially.

Pillar 1: The gluten-free diet#

The GFD is the only treatment that addresses the root cause of DH. Everything else manages symptoms.

What it does#

  • Stops the immune cascade that produces the antibodies depositing in your skin
  • Allows your intestine to heal
  • Over time, allows your skin IgA deposits to slowly clear
  • Reduces your long-term risk of lymphoma (an important reason for strict compliance)

What to expect#

Timeframe What happens
1-6 months Skin rash starts to improve
6-24 months Many patients can reduce or stop dapsone
~2 years Average time for diet alone to control the rash
Up to 10 years IgA deposits fully clear from the skin

This is slow. The gap between starting the diet and seeing skin improvement is the hardest part for most patients. That's why dapsone exists — to bridge that gap.

Key facts#

  • 93% of patients on GFD were able to reduce their dapsone dose
  • 28% achieved complete dapsone discontinuation on strict GFD
  • Only 16% on a normal diet could reduce dapsone
  • The diet must be strict and lifelong — even small amounts of gluten can trigger flares

GFD details: Gluten-Free Quickstart

Pillar 2: Dapsone#

Dapsone is the only FDA-approved medication for DH. It provides dramatic itch relief, often within 1-3 days.

What it does#

Dapsone works by blocking the neutrophils (white blood cells) that cause the inflammatory damage in your skin. Specifically, it:

  • Inhibits the myeloperoxidase (MPO) enzyme system
  • Blocks neutrophil adhesion and migration
  • Reduces the chemical signals that recruit neutrophils to your skin

What it does NOT do#

  • It does not address the underlying autoimmune process
  • It does not clear IgA deposits from your skin
  • It does not heal your intestine
  • If you stop taking it without being on GFD, the rash comes back

Dapsone is a bridge, not a cure. The GFD does the real work.

Typical dosing#

  • Starting: 25-50 mg/day
  • Maintenance: 50-150 mg/day
  • Goal: Find the minimum dose that controls your symptoms, then reduce as GFD takes effect

Required monitoring#

Dapsone requires regular blood tests because of its side effects:

When Tests
Before starting G6PD level (mandatory — G6PD deficiency is a contraindication), CBC, liver function, kidney function
Weekly for first month CBC
Monthly for 3 months CBC, liver function
Quarterly ongoing CBC, liver function, methemoglobin level

Common side effects#

  • Hemolytic anemia — dose-dependent breakdown of red blood cells. Very common. Causes fatigue.
  • Methemoglobinemia — reduces oxygen-carrying capacity. Causes fatigue, headache, blue-tinted skin.
  • GI upset — nausea, stomach pain
  • Fatigue — the most consistently reported complaint. Likely from anemia + methemoglobinemia combined.

Serious side effects (rare)#

  • Agranulocytosis — dangerous drop in white blood cells (reason for CBC monitoring)
  • Dapsone hypersensitivity syndrome — fever, rash, organ involvement (2-5% of patients)
  • Peripheral neuropathy — weakness in hands/feet with long-term use
  • Hepatotoxicity — liver damage

What patients actually say#

Patients frequently call dapsone a "miracle drug" for its speed — but the side effects are real. The most common complaint is persistent fatigue. Many patients find that lower doses (25-50 mg) work with fewer side effects than the commonly prescribed 100 mg.

Full details: Treatments & Clinical Trials and Patient Experiences

If dapsone doesn't work or isn't tolerated#

Alternatives include:

  • Sulfapyridine (500-1500 mg/day) — less effective but better tolerated
  • Sulfasalazine (1000-2000 mg/day) — another alternative
  • Potent topical corticosteroids — temporary itch relief only, not disease-modifying
  • Emerging options — JAK inhibitors and biologics are being explored in case reports

The treatment timeline#

Here's what a typical treatment path looks like:

Diagnosis
    ├── Start dapsone (symptom relief in 1-3 days)
    ├── Start strict GFD (same day)
    │
    ├── Months 1-6: GFD + dapsone together
    │   └── Rash improving, dapsone still needed
    │
    ├── Months 6-24: Begin reducing dapsone
    │   └── GFD taking over disease control
    │
    └── Year 2+: Many patients off dapsone
        └── GFD alone maintaining clear skin

Not everyone follows this timeline. Some patients need dapsone longer. Some achieve diet-only control faster. Severe rash at diagnosis predicts a longer path to clearance.

Next steps#

Learn the practical details of going gluten-free:

Gluten-Free Quickstart