Familial Mediterranean Fever community

Familial Mediterranean Fever (FMF) is a hereditary autoinflammatory disorder.

Recently diagnosed with FMF

Written by Tata, published 5 months ago.

Hi All,
This site is great and provides a lot of vey important information for FMF patients.
Here is my story. My family is of Armenian descent and now leaves in US. My 10 year old son had recurrent episodes of peritonitis and fever since he was 5, but despite multiple doctor and ER visits nobody could give us a clear answer on his condition. A few months ago his knee got very inflamed after a minor injury and, when we took him to a rheumatologist (who happened to know about FMF), she recommended doing a genetic test for FMF. He turned out to be M680I homozygous. Last week we started 0.6 mg colchicine twice a day. It was a great relieve for our family to finally get the diagnosis and start the preventive treatment.

However, I am still very concerned about my son’s high blood ESR (60-70 mm/hr) in the last three months and the fact that his knee inflammation is persistent despite daily Diclofenac for the past 3 months.
I’ve read that although in the majority of FMF patients arthritis is self-limiting within several days or weeks and might not require any medications, small percentage of FMF patients can have a chronic, destructive arthritis.

Does anyone else have similar experience with high blood ESR and long-lasting arthritis?
How long does it take for the blood indicators to return to the normal levels after the initiation of colchicine treatment? Any feedback/information would be greatly appreciated.

Thank you!

Written by Tata, published 5 months ago.

3 comments for «Recently diagnosed with FMF»

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  • scandy

    Can anyone offer their help or comments please?

    My daughter is 8 years old. I am an American and my husband is an Arab from Saudi Arabia. There are no known cases of FMF in either side of our families. When she was 4 years old she was hospitalized for 5 days with hyperpyrexia. Her temp was 40.2-41. There was no known diagnosis as to why she had this high fever, abdominal pain finally just to please me they diagnosed her with acute UTI. She was on IV therapy with IV antibiotics. Nothing worked! A year later, she mysteriously developed the same symptoms. I then took her to a different hospital ( well known American hospital) and yet again it resulted in several doctors hovering over her. They diagnosed her with an upper respiratory infection- yet she was not admitted having any symptoms of a cough just the very high fever with abdominal pain ( 3 days later she developed the cough) 5 days later she was discharged. A few months went by with her still complaining of abdominal pain- above the belly button ( I assumed it was something that she ate, changed food around or possible lactose intolerant, but she didn’t have the S&S) and at times her “bones” hurt (I assumed that she had been playing too hard and was having the common growing pains that my other children once had.)
    6 months ago she was having an attack daily for 3 weeks- worried I took her to a gastroenterologist who had some knowledge of FMF. He suggested that we run some tests and send her blood to France ( because Saudi Arabia doesn’t run this genetic test) to check for the gene FMF. He prescribed her the Colchine and some how it helped!!! 3 weeks had passed and we received the results. Difficult to understand ( I am a nurse) but finally understood that the results were NEGATIVE! Back to ground zero...

    Took her back to the doctor, his explanation was she isn’t positive and wanted to run more tests. I am at a stale mate. After researching FMF...I AM SURE this is what she has! The doctor believed so until the results came back - . The medicine does help however, he advised me NOT to use it daily just in case she is not FMF positive. I will be in Arizona in June and plan on getting her medical care there. She is having attacks weekly. Sometimes once sometimes 3-4 times. Now her complaints besides severe abdominal pain are her joints, back and neck in the vertebrae. The only thing that helps her is taking 25 mg of Diclofenac and hot water bags on her abdomen. A close friend of mine has a sister in law with FMF and told me to check her temperature at the time of the attack.... I did and in fact found it to be elevated slightly at 37.8- 37.9 once the attack was gone....the fever was gone.

    Please advise me what to do, and if you know of ANY specialist for FMF in Arizona.

    Any comments would be greatly appreciated.

  • toyre

    Read this page on AFFMF site

    affmf.jimdo.com/les-publications/les-publi...

  • AllieFreitas

    Hi Scandy-

    I did some research and someone suggested a doctor in California may be able to point you in the right direction. Her children have Familial Cold Autoinflammatory Syndrome. I would suggest contacting Dr. Hal Hoffman (not sure if he's still at University of CA - San Diego) to see if he knows of anybody or knows of any developments in the treatment of FMF.

    Here is an article he wrote: www.rxpgnews.com/rheumatology/Clinical_stu...

    And a link to his credentials and how to contact him: www.cssd.us/body.cfm?id=264

    Hope that helps!

    Allie

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