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Is there any one that has this Disease? I Just found out i have it on june 17th and its very rare! I feel so alone. I hope i can find someone who has the same Disease so i understand what im going through. thanks
Exercise Down syndrome Cancer Appendicitis Back pain Colchicine Pneumonia TRAPS Whooping cough Lupus Rheumatoid arthritis Cortisol Stress Asthma PFAPA Arthritis Familial Mediterranean fever (FMF) Fever Pain Edema Ear infections Amyloidosis
I have never heard of it before. What are the symptoms?
Maybe i could find some others with it.
Fevers that last 24-48hrs that come fast. Sever stomach pain and joint pain. Some people only have one attack a month while I have selveral a week. Its very rare and there is no cure for it. I also have back pain, lack of blowl sounds, ridged stomach kidney infections and vomaiting. I hope you can help. Thank you
I havent been able to find anyone with this Disease, but i wont give up and if i find anyone then i will let you know.
I have found a site where you can get more about FMF and some Resources.
It is at the bottem of this site:
http://www.mazornet.com/genetics/familial_mediterranean_fever.htm
Hopefully this will help
My son (4) has FMF. He has been diagnosed for over 1year now. He takes an enbrel shot 2 times a week to keep the symptoms not extreme. He was having high fevers and many other symptoms every 15 days. lasting 5 to 6 days in length.
HI CHRISTIAN; I HAVE A RARE DISEASE MYSELF, WHICH IS TRAPS, IT HAS SIMILAR SYMPTOMS BUT MORE INTENSE. I WAS DIAGNOSED WITH TRAPS IN 2000 AND AM NOW GETTING REMICADE INFUSIONS EVERY SIX WEEKS. I HAD FEVERS FOR BETWEEN 2 TO 3 WEEKS,JOINT PAIN, RED BLOTCHES OVER MY BODY, ACHES AND PAINS ALL OVER MY BODY,IT ALMOST FELT LIKE A FLU, BUT IT WAS EVERY MONTH. I WENT TO ALL DOCTORS, SPECIALIST AND HOSPITAL HERE IN TORONTO, UNTIL I FOUND MY SAVIOR, MY DOCTOR. HE SENT MY BLOOD TO BATHESDA AND AFTER ALMOST EIGHTYEARS OF SUFFERING I GOT MY DIAGNOSES
FINALLY and am nowgetting treatment. if you want to chat just email me..graceanf@hotmail.com
Hi,
My daughter is 5 years old and has had fevers (up to 104.8), stomach pain, and headaches now for four months. The doctors have done so many tests and have come up with nothing. If you have any information that could help I would be very thankful!
Hi, My name is Krissi and since age 14 months my sons doctors have been searching for answers to his bizarre symptoms, which included high prolonged fevers, hive like rash, joint pain and swelling, neurological problems (siezure, balance, loss of motor control and reflexes and muscle function), severe dental caries and many others, but I'd also like to include pain, lots and lots of pain from mild to severe crisis. After an unbelievable amount of testing and several different diagnosis blunders, we found ourselves at the NIH in Bethesda, MD. After several visits, the doctors discovered he had the genetic marker for Familial Mediterranean fever. It was such a relief to finally have an answer, although some of his symptoms supercede this disease so they believe he has another underlying inflammatory condition that is complicating his diagnosis. However, they increased his medication in June and it'snothing short of a miracle for him. I've been doing 4 years of research on periodic fever syndromes, and oddly, the docs never thought to look for FMF because his symptoms were not totaly similar to this disease, but it's definetly what he has becasue he is responding so well to the medication, colchicine. SO I'm no expert but sometimes I know more than the doctors do during his visits. If you need help, advice, or someone to talk to who KNOWS what is like to live with this disease and has done their homework, please feel free tp contact me! I hope you find your answers.
Hi Mary,
have yoru doctors check her SED rate and CRP when she is having a febrile episode. ALso her fibrin levels, and possibly her Immune Globulins. It sounds like she is experiencing flares consistent with the periodic fever syndroms: NOMID/CINCA, TRAPS, Muckle Wells, Cold Uticaria, Familial Mediterranean Fever, PFAPA, and several others. They are mostly genetic although about 20-30 % have no genetic markers but hav eactive disease. Get a referral for a good rheumatologist and start pushing until you have answers and be prepared for some mighty egotistical doctors and some nice, genuine doctors, but don't give up. Good lock, plese keep me posted, as it took me 4 years to get a diagnosis and treatment for my 4 year old son!
Mary,
FMF symptoms start at that age! There is no test they can run but tell the doctor about FMF go to the mayo clinc web site type in FMF and it gives you a lot of info! You get fevers that last anywere from 1-5 days,stomach pain. I have asthma well its not asthma its the FMF,joint pain. Leg pain thats like growing pains, and more.Read about it. There is one teat but its not postive. Like lupus sometimes the test is postive and sometime neg and u do have it! Im on the only meds for it helps so much its calle corazine. Its for gout as well. But if he take that med and get better its FMF. Its treable and you can live with it and the early u get dignosed the better! Let me know I will send u info im in a FMF support goup and there is a lot of info..
Your sons symptoms sound more like NOMID which is also a perodic fever disorder. Has his Physician done a gene test? There is currently a trial going on through National Institute of Health and Novartis for a drug that is for NOMID. I have FCAS/MWS which is also a periodic fever. It took 50 years to get my diagnosis. I enrolled in a trial and the gene testing was part of the trial and it came back positive for the mutated gene. Please check out this web site for more information colcholine was the older treatment for FCAS . www.nomidalliance.net
Hi.I,m almost 43.I was diagnosed with FMF at the age of 10.I suffered through a lot of cramps and pain through it and was given colchicine. Which had side effects that I couldn't deal with.Lost a lot of school and work days.So,I decided to stop taking colchicine at the age of 17 because of the side effects .The pains stopped but, at the age of 36 in one month I lost 20 pounds.So, I went to the doctor and they thought it was Cancer.Did about of a month of different tests.It wasn't cancer it was Amyloidosis they said caused by not taking my colchicine.Anyway, I went back on colchicine and I also started getting high blood pressure so Im taking medicine for it now.Its been 7 years it hasn't gotten worse I haven't been sick and been watching what I eat.Tough part is the doctors say cut out the potassium and salt intake.Thats rough since almost everything has potassium and salt.So,I cant lie ,I cut down on it but there are certain things I cant stop eating certain foods that has potassium and salt, and I try to exercise 3 times a week.Keeping fit and eating semi healthy has kept me in good shape.Anything else you want to know let me know.Thanks
Hi Raz,
I was very interested to see that you had received a diagnosis of Amyloidosis but are not experiencing any further problems 7 years later. I have localized amyloidosis and have had two surgeries, received radiation treatments and am currently undergoing treatment with a KTP laser at the Boston University Amyloid Clinic. As an active member of the Amyloidosis Support Groups Inc., I would like to invite you to join our email list at www.amyloidosisonline.com. We have a few members like yourself that have been diagnosed with AA amyloidosis (also known as Secondary Amyloidosis). For further information about the disease you can visit our website at www.amyloidosissupport.com. You will also find the listings for our face to face meetings that are held in several different states throughout the year.
For Kristin: As you can see from Raz's posting it is VERY important for you to continue your meds. Secondary Amyloidosis is caused by long-term serious chronic infections or inflammatory diseases such as rheumatoid arthritis or FMF. The amyloid deposits in this type of amyloidosis are made up of AA protein, a protein that is markedly elevated in the body during inflammation. The disease progression is usually slow, and the treatment of the underlying chronic infection or disease can slow down or stop the progression of further amyloid deposits. In secondary amyloidosis the organ most often involved is the kidneys, but GI tract, liver and heart can be involved as the disease progresses. Symptoms include protein in the urine, edema, weight loss and fatigue. If you begin to experience any of these symptoms, you need to talk further with your physician to see if you need any additional testing.
Hello Sharper,
yes, I'm familiar with NOMID, which is what they initially thought my son had. The genetic test came back negative, although 50% of NOMID patients have no genetic mutation. We are patients of NIH, and there they did a lumbar puncture and tested for elevated spinal pressure and the presence of white cells which are indicative of NOMID, and both of those tests came out negative. He had mast cells and some other cell in his fluid, and they don't know why. Dr. Goldbach-Mansky calls Jorden "her little puzzle" because his symptoms don't exactly fit into any one specific category of periodic fever. THey did full scale genetic testing for all the periodic syndromes and the only link they found was the mutation on the MEFV gene for FMF. THey still have not officially diagnosed him, they wanted to do the colchicine trial (FMF patients are often diagnosed by their positive response to colchicine). The first 6 months Jorden did not respond to the med, but it did make his fevers more manageable and decrease his pain from crisis to manageable, so in June they increased his dosage and the results were noticeable within 24 hours. Nearly all of his symptoms remissed, save for some hives and very mild pain. NO fevers, no crisis, no swelling. Around September 16 or so, we started to see an increase in his pain, stiffness, hives and feeling"sick" again, but no real high fevers or swelling yet. Jorden may be the rare one who developes a resistance to colchicine, but for now it's still manageable and I'll take it compared to where we were before June. I appreciate your post, it was through the Nomid Alliance and Karen D. from San Francisco that connected us with the doctors at the NIH. I do like to connect with people living with these diseases and learning about how they manage, it's all helpful and I would to hear about your story and where you are now with meds, doct etc! Thank you!
I was dignosed in june with FMF Im 24. I have had fever and pain sence I was 5 years old. But they told my mom It was because I was born early! When I became a teen they said it was endometerosis! Bye the age 20 I was so sick from then to now I had 17 oporations for my apdix and gall-bladder! Which FMF can make those go bad! But no one could conect the dots! I have had 4 misscarges no live births and my right ovary was remoived in jan it had Giant Cells and Limphnotic cells. Which was from the FMF. They still did not know what to do! Then After a years of infections low white counts and all the other stuff I found a great doctor and he new what it was! Put me on cotratine 2 a day and im down to 2 flairs a month!!! But I still hyave pain in my joints and stomach! doc said i may always have that! Been on the meds since june. Good lick on everuythng! They say if I would have know of the FMF at a early age It would be easer to live with be3cause no im cronic and it takes time to get the meds to work
hi Kristen,
Wowo you have been through so much, what a relief to finally get diagnosed after all this time. I just found the FMF support group on yahoo groups and I think I just read about you there, I've been surfing the posts and there is alot of interesting stuff there. Jorden has a lot of stomach aches, usually with his fevers, but he had 3 flares that the pain was so bad he was screaming and doubled up, they thought he was having appendicitis or bowel obstruction all three times, but ultra sounds show differently, now we know why and I usually don't even take him to the ER anymore, they are kind of naieve there, and a lot od docs don't really want to losten to what you know because they can't stand the fact that a regular person knows more asbout a condition than they do.
B efore the right dose of colchicine, Jorden flared every 6 weeks with severe pain and high fevers lasting 10 days, but then he would spike low grade 100 degree fevers almost EVERY DAY inbetween those strong flares, and his pain was so bad he wole up crying every morning and could not get out of bed, I had to carry him, medicate him, put him in warm water and rub him. Sometimes I could not massage him because the pain was to strong.
Jorden has had blood in his stool at times, and a lot of infections= many staph and strep infections, pneumonia, and whooping cough. He gets middle ear infections all the time, and they usually lead to eardrum ruptures due to the over active inflammatory process. He has had no internal operations, I hope we don;'t have to. I wonder if women with FMF have stronger inflammatory flares in the abdoman due to the ovaries and utrerus? I notice most of the women seem to have very severe abdomenal issues compared to the men..................please, lets keep in touch! What dose of colchicine are you on, and do youtake any other pain meds or anti inflammatory meds?
Hi everyone,
My doctor is far away and there is no way to find her...
I have been diagnosed with FMF last month after suffering from it for around 40 years. I feel great now since I started taking Colchicine. I take just a pill a day, 0.5 mg, and feel quite all right, no fever, no killing pain in the belly. But I am afraid 0.5 mg a day can not prevent amyloidosis. Does anyone have idea about the minimal effective dose of colchicine? I combed the net but could not find an answer to my question...
Thanks everyone.
You can email me if you prefer that way
scsbo@yahoo.com
Hello everyone who has responded to this page on fmf. I have recently just joined. My boyfriend has fmf. he has had since he was eight. Years of being sick and missing school, loosing jobs because of it. A few yrs ago he had a test done. And was(dianosed) with fmf. He has an attack atleast once a month if not more. Since I met him. He has gone two and half months with out an attack then had a bad one. His attacks can last up to 12 hrs if not more, and when he is done he goes to the hosp. His stay in the hosp can last up to a few days or weeks depending on wether he gets an infection or not. I do know if anyone is sick they can not come around or it will put him into an attack. I have looked all over the net on this and really can not find anything about it. its all the same thing. I also know his fmf i believe has caused chronic vomiting. I know he goes through alot with this disease. It also takes alot out of the people around them. When he was younger his mom helped him alot through his attacks i believe by rubbing his back in circler motion.
Hi Midgit,
It's always sad to hear FMF stories...we have all gone through it.
But what is your question?
Cheers
Arthur
Was wondering if there is anywhere here on the web to learn more about fmf than what I know. It seems that every page I go to on here is the same. They don't really know much about it. Let alone some of the doctors.
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