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)
Sporadic
Usually appears on its own, not inherited from a parent
Late onset
Begins later in life, typically after age 50
FDA & Trial Timeline
10 eventsGABAPENTIN: New indication approved
GABAPENTIN: New indication approved
Beijing Tiantan Hospital — NA
GABAPENTIN: New indication approved
GABAPENTIN: New indication approved
Zhejiang Chinese Medical University — NA
Feng Gao
Li Zhao
Union Hospital, Tongji Medical College, Huazhong University of Science and Technology — NA
iN Therapeutics Co., Ltd. — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
4 availableLidoderm Patch
relief of pain associated with post-herpetic neuralgia
Horizant
Management of postherpetic neuralgia in adults.
Gralise
For the management of postherpetic neuralgia
Qutenza
Management of neuropathic pain associated with postherpetic neuralgia
Specialists
View all specialists →No specialists are currently listed for NON RARE IN EUROPE: Post-herpetic neuralgia.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
2 resourcesTravel Grants
No travel grants are currently matched to NON RARE IN EUROPE: Post-herpetic neuralgia.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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.