NON RARE IN EUROPE: Post-herpetic neuralgia

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Overview

Post-herpetic neuralgia (PHN) is a painful nerve condition that develops after a shingles (herpes zoster) infection. Shingles is caused by the varicella-zoster virus — the same virus that causes chickenpox. After a person recovers from chickenpox, the virus stays dormant in nerve cells. Years or decades later, it can reactivate as shingles, causing a painful blistering rash. In most people, the pain goes away once the rash heals. However, in some people, the nerve pain continues for months or even years after the rash has cleared. This lingering pain is called post-herpetic neuralgia. PHN happens because the virus damages nerve fibers during the shingles outbreak. These damaged nerves send exaggerated and confused pain signals to the brain. The pain is usually felt in the same area where the shingles rash appeared, most commonly on one side of the chest, face, or torso. The pain can be burning, stabbing, shooting, or aching, and the affected skin may become extremely sensitive to touch — even light clothing or a breeze can trigger intense discomfort. PHN is not considered a rare disease in Europe, as it affects a significant number of people, particularly older adults. The risk of developing PHN increases with age, and it is one of the most common complications of shingles. Treatment focuses on managing pain and improving quality of life. Options include medications such as anticonvulsants, antidepressants, topical treatments, and in some cases opioid pain relievers. Prevention through shingles vaccination is the most effective strategy to reduce the risk of both shingles and PHN.

Key symptoms:

Burning pain in the area where shingles rash occurredStabbing or shooting nerve painExtreme skin sensitivity to touch (allodynia)Numbness or tingling in the affected areaItching in the affected areaDeep aching painPain triggered by light touch, clothing, or windSleep disturbance due to painFatigue and low energyAnxiety or depression related to chronic painReduced ability to perform daily activitiesHeadache (if facial nerves are involved)Muscle weakness in the affected area (rare)

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Late onset

Begins later in life, typically after age 50

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Feb 2026

GABAPENTIN: New indication approved

FDAcompleted
Jan 2026

GABAPENTIN: New indication approved

FDAcompleted
Apr 2025Esketamine Combined With PRF for Trigeminal Postherpetic Neuralgia

Beijing Tiantan Hospital — NA

TrialNOT YET RECRUITING
Jan 2025

GABAPENTIN: New indication approved

FDAcompleted
Dec 2024

GABAPENTIN: New indication approved

FDAcompleted
Jul 2024The Treatment of Postherpetic Neuralgia in the Head and Face With Superficial Needling Combined With Electroacupuncture

Zhejiang Chinese Medical University — NA

TrialRECRUITING
Mar 2024Predictive Models for the Treatment of Recurrent Herpes Zoster Neuralgia Following Spinal Cord Electrical Stimulation.

Feng Gao

TrialENROLLING BY INVITATION
Feb 2024The Efficacy of High-frequency Short-time Spinal Cord Stimulation in the Treatment of Herpes Zoster-associated Neuralgia

Li Zhao

TrialRECRUITING
Feb 2023Clinical Trial of the Safety and Efficacy of Peripheral Nerve Stimulation in the Treatment of Peripheral Neuropathic Pain.

Union Hospital, Tongji Medical College, Huazhong University of Science and Technology — NA

TrialRECRUITING
Nov 2022A MAD Study to Evaluate the Safety, Tolerability and PK/PD of iN1011-N17 in Healthy Volunteers and PHN Patients.

iN Therapeutics Co., Ltd. — PHASE1

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

4 available

Lidoderm Patch

Lidocaine patch 5%· Teikoku Pharma USA, Inc.

relief of pain associated with post-herpetic neuralgia

Horizant

gabapentin enacarbil· Arbor Pharmaceuticals, LLCOrphan Drug

Management of postherpetic neuralgia in adults.

Gralise

gabapentin· Golf Acquiror LLCOrphan Drug

For the management of postherpetic neuralgia

Qutenza

capsaicin· Averitas Pharma, Inc.Orphan Drug

Management of neuropathic pain associated with postherpetic neuralgia

Clinical Trials

6 recruitingView all trials with filters →
Phase 11 trial
A MAD Study to Evaluate the Safety, Tolerability and PK/PD of iN1011-N17 in Healthy Volunteers and PHN Patients.
Phase 1
Actively Recruiting
· Sites: Adelaide, South Australia · Age: 1875 yrs
N/A3 trials
Closed-Loop Deep Brain Stimulation for Refractory Chronic Pain
N/A
Actively Recruiting
PI: Prasad Shirvalkar, M.D., Ph.D (University of California, San Francisco) · Sites: San Francisco, California · Age: 2280 yrs
Clinical Trial of the Safety and Efficacy of Peripheral Nerve Stimulation in the Treatment of Peripheral Neuropathic Pain.
N/A
Actively Recruiting
· Sites: Wuhan, Hubei · Age: 1899 yrs
The Treatment of Postherpetic Neuralgia in the Head and Face With Superficial Needling Combined With Electroacupuncture
N/A
Actively Recruiting
· Sites: Hangzhou, Zhejiang · Age: 5080 yrs
Other2 trials
The Efficacy of High-frequency Short-time Spinal Cord Stimulation in the Treatment of Herpes Zoster-associated Neuralgia
Actively Recruiting
· Sites: Zunyi, Guizhou · Age: 4085 yrs
Predictive Models for the Treatment of Recurrent Herpes Zoster Neuralgia Following Spinal Cord Electrical Stimulation.
Enrolling by Invitation
· Sites: Wuhan, Hubei

No specialists are currently listed for NON RARE IN EUROPE: Post-herpetic neuralgia.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Financial Resources

2 resources
Horizant(gabapentin enacarbil)Arbor Pharmaceuticals, LLC
Qutenza(capsaicin)Averitas Pharma, Inc.

Travel Grants

No travel grants are currently matched to NON RARE IN EUROPE: Post-herpetic neuralgia.

Search all travel grants →NORD Financial Assistance ↗

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What treatment options are best for my specific type and severity of nerve pain?,Are there side effects I should watch for with the medications you are recommending?,How long should I expect the pain to last, and is there a chance it will go away completely?,Would a topical treatment like a lidocaine patch or capsaicin patch be appropriate for me?,Should my family members get the shingles vaccine to protect themselves?,Are there non-medication approaches like physical therapy or nerve blocks that could help me?,When should I come back for a follow-up, and what signs should prompt me to call sooner?

Common questions about NON RARE IN EUROPE: Post-herpetic neuralgia

What is NON RARE IN EUROPE: Post-herpetic neuralgia?

Post-herpetic neuralgia (PHN) is a painful nerve condition that develops after a shingles (herpes zoster) infection. Shingles is caused by the varicella-zoster virus — the same virus that causes chickenpox. After a person recovers from chickenpox, the virus stays dormant in nerve cells. Years or decades later, it can reactivate as shingles, causing a painful blistering rash. In most people, the pain goes away once the rash heals. However, in some people, the nerve pain continues for months or even years after the rash has cleared. This lingering pain is called post-herpetic neuralgia. PHN hap

How is NON RARE IN EUROPE: Post-herpetic neuralgia inherited?

NON RARE IN EUROPE: Post-herpetic neuralgia follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does NON RARE IN EUROPE: Post-herpetic neuralgia typically begin?

Typical onset of NON RARE IN EUROPE: Post-herpetic neuralgia is late onset. Age of onset can vary across affected individuals.

Are there clinical trials for NON RARE IN EUROPE: Post-herpetic neuralgia?

Yes — 6 recruiting clinical trials are currently listed for NON RARE IN EUROPE: Post-herpetic neuralgia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

What treatment and support options exist for NON RARE IN EUROPE: Post-herpetic neuralgia?

1 patient support program are currently tracked on UniteRare for NON RARE IN EUROPE: Post-herpetic neuralgia. See the treatments and support programs sections for copay assistance, eligibility, and contact details.