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Living with FMF

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Understanding FMF

FMF is an inherited condition that causes repeated episodes of fever and painful inflammation in the belly, chest or joints.

It is caused by changes in the MEFV gene and is usually inherited from two parents who each carry a change. Episodes often start in childhood or the teen years, and without preventive treatment a protein buildup called amyloidosis can harm organs such as the kidneys.

Signs & symptoms

Episodes usually last 12 to 72 hours and often come about once a month, though timing varies.

  • Fever
  • Belly pain
  • Chest pain
  • Joint pain or swelling
  • Muscle aches
  • Rash or headache during some episodes

Tell your care team about new or changing symptoms.

Diagnosis

  1. Pattern of episodes

    Doctors look for repeated attacks of fever with belly, chest or joint pain, with times in between when you feel well.

  2. Blood tests

    Blood tests may show a high white blood cell count and other signs of inflammation.

  3. Genetic testing

    Testing of the MEFV gene, alone or as part of a panel for periodic fever conditions, can help confirm the diagnosis.

Care & treatment

Prevention
Taking preventive medicine regularly, as prescribed, helps control episodes and is key to preventing amyloidosis.
Treatment
There is no cure, but symptoms can largely be managed, and other options exist if the first treatment doesn't work well or isn't tolerated.
Monitoring
Regular checkups with blood and urine tests, at least once a year, help check inflammation and kidney health.

Discuss benefits, risks and follow-up with your care team.

Everyday life

Keeping track of episodes helps you and your team see how well your plan is working.

  • Log each episode: start date, how long it lasted, any fever and where the pain was.
  • Note how you take your preventive medicine and any side effects to discuss at visits.
  • If you are planning a pregnancy, talk with your care team about your medicines ahead of time.
Bring these questions to your next doctor visit
How well is my treatment controlling my episodes and inflammation?
How often should my kidneys and urine be checked for signs of amyloidosis?
Should my family members consider genetic testing or counseling?
Sources: NIH GARD — FMF · MedlinePlus Genetics — FMF · NIH/NLM GeneReviews — FMFPage drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

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Explore research for FMF

Explore actively recruiting FMF studies with HealthSpark.

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  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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