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Saturday, December 24, 2005

Familial Mediterranean Fever (FMF)

Greetings netizens, I want to take a minute to talk about Familial Mediterranean Fever (FMF), an autosomal recessive genetic disease characterized by brief recurrent episodes of peritonitis, pleuritis, and arthritis, and usually associated with fever.

It afflicts tens, if not hundreds, of thousands of people of Mediterranean descent, specifically:
  • Armenians, who have the highest incidence, *with an estimated prevalence of 1 case per 500 (and a recessive gene frequency of 1:7)
  • one per 250-1000 Sephardic Jews (with a gene frequency of 1:8-16 )
  • one case per 1000 among the population of Turkey
  • one case per 2600 among Arabic people (1:50 gene frequency)
  • one per 73,000 Ashkenazi Jews (1:135 gene frequency)
*All figures are approximations, based on various population studies. Actual incidence may vary.

Unfortunately, my fiancée is one of these statistics, having inherited the recessive genes (though not necessarily the same gene, as there are numerous variants) from her parents. They, in turn, inherited it from one of their own parents, and so on and so on, back through the ages to one (theoretical) individual who first manifested the genetic mutation, and is essentially the ancestor of thousands of Armenians, Turks, Arabs and Jews (the irony, eh?)

Why the mutation developed, and why it was able to survive for what is probably several thousand years, is a mystery. Doctors believe carriers of the recessive gene (i.e., only inherited from one parent), produce a protein—marenostrin, Latin for "our sea" because of the Mediterranean connection—that may combat a certain type of inflamation or fever that affects people in that geographical area. This might have initially made it an "attractive" characteristic, since it would have helped people, and their offspring, survive.

Remember that minor illnesses we take for granted today used to kill most people before the advent of mass-produced pharmaceuticals—in the case of FMF, a drug called colchicine, which (in an amazing stroke of luck or Divine Providence) is synthesized from a flower that just so happens to be native to North Africa, where it had probably been put to good use as a herbal remedy by the local affected members of the population.

The tiny, unassuming yellow pills that my fiancée takes twice a day make all the difference in the world: taking them means she won't suffer kidney failure and the associated complications, since—if left unchecked—the excess proteins produced by disease eventually destroy the renal system, typically causing death by the age of 50.

Colchicine also helps reduce the severity and frequency of FMF attacks. When we first started dating, at age 19, when she was a smoker (a no-no for colchicine-takers), and juggling work, school and going out on weekends—like every other "normal" person else her age—my fiancée suffered three serious attacks.

In these instances, the pain from inflamation was so severe—she was completely incapacitated, throwing up bile and had a persistent fever—that she had to be hospitalized and administered a morphine drip. Since then, she has been taking life easier, doesn't smoke or drink, or stay out late, and usually takes her pills at least twice a day. She has recently been taking only one pill a day (as small as they are, the pills are hard on the digestive system), so perhaps that's why she had her latest bout of inflamation last weekend—peaking on the night of my sister's engagement party.

In a way, I'm glad that it happened now, because I was able to watch her mother take care of her in her moment of anguish, because it's a role that I'm going to have to assume once we're married. To be honest, I've never felt as useless as I did when watching the love of my life howl with pain, and not be able to do a damn thing about it. I'm talking about pain so bad, it caused her to throw up the contents of her barely touched dinner.

In the worst of it, she was even hallucinating and seemed to revert to a child-like state. I'm guessing that's a coping mechanism she's developped over the years, especially since she spent the better part of her childhood undiagnosed. Or rather, misdiagnosed: like so many FMF sufferers, she had her appendix taken out by mistake, since the symptoms are so similar to appendicitis.

We probably should have taken her to the hospital, where they could have given her some real pain-killers (to be able to make it through my sister's party, she popped more anti-inflamatory pills than I care to mention), but the prospect of possibly waiting several hours in the middle of the night before being seen put the kibosh on that idea.

I don't blame her for choosing to suffer at home, in her own bed—after enduring morphine and IVs, bad hospital food, and missing countless days of school as a child and teen (it still blows my mind that none of the teachers at her Armenian private school knew anything about her disease and many even thought she was faking... As if the stigma of being a "sick kid" wasn't bad enough!)

My brave little Rita lived through two hellish nights of FMF attacks that weekend. The following Monday, we were lucky enough to get an appointment with a specialist (a rheumatologist named Dr. Cohen, I forget his first name) who had seen her several years before, after he last rash of attacks.

He prescribed her a 12-day, post-FMF attack regiment of anti-inflamatory pills (Novoprednisone, or prednisone): four pills in the morning and four at night for the first three days, three in the morning and three at night for the next three days, etc., until the 12th day.

By treating her inflamation—the cause of her extreme pain during attacks—the doctor allowed her to function well enough that she was able to study properly for her management law final exam. I highly recommend a similar regiment for any FMF sufferer.

However, in the event that neither colchicine, nor anti-inflamatories, nor pain-killers have any effect on her condition, he also prescribed an immune system booster (Roferon-A, or interferon alpha. It's some sort of anti-viral drug that needs to be stored in a refrigerator, and injected when needed (she bought a batch several years back, but it's since expired).

Obviously, all these medications sound scary (rightfully so, if you check out the possible side-effects of inteferon alpha, which include suicidal thoughts and psychosis), but a necessary evil for someone suffering from FMF, not to mention their loved ones.

I hope someone will find this information useful. I know I have.

Anonymous Ara Pehlivanian said...

FMF needs a good roundhouse kick to the head by Chuck Norris.

6:42 a.m.  
Blogger Nathalie said...

Sounds traumatic.

11:34 a.m.  
Anonymous renee said...

Don't take prednisone. My sister and I both have FMF. I always took the "hard" route and suffered through attacks and then rested in bed for a week afterwards. I eat organic, avoid stress,avoid legumes and long chain fatty acids, live in Florida and exercise. My sister always went to the hospital, took all the pain meds and prenidsone and leukotrine inhibitors. I hate to say it, but at 40, she looks 55. She has heart failure, a pacemaker, lost her hair, has a hip replacement etc etc. I take only homeopathics, and my doctors say I am in perfect health. I have had as many painful, agonizing attacks as my sister. I am recovering from one now. As you get older, they decrease in frequency. You can have children, I have nine. Don't let any doctor tell you you can't have kids.

FMF is awful, horrible and I have spent many many agonizing nights. But in this case, so far, the "cure" is worse than the ailment.

4:46 p.m.  
Blogger giornalista said...

Hi Renee. If you happen to find your way back to this post, please e-mail me. My fiancée has never actually talked to anyone—let alone an adult with several children—living with the disease. It would be greatly appreciated.

12:43 a.m.  
Anonymous Anonymous said...

I am a 59 yr. old male of Armenian descent who was diagnosed with FMF at age 28. I had suffered virtually since birth but had remained undiagnosed until seen by a rheumatologist of Indian descent at 28. I would be very much interested in hearing from anyone else with FMF to share experience and perhaps offer some hope to those newly diagnosed.

4:37 p.m.  
Anonymous Anonymous said...

Hey there!

I am 17 years old, a freshman in university, and I am also one of the three in my family who suffers from FMF. Rita's story hit home to me.

It was like reading my own story. I had my appendix removed. However, I have had kidney failure, but recovered.

The thing that really helps and cuts down sick time once the FMF attack starts is IV fluids, since we generally try to avoid morphine drips. I can say that if you have IV fluids, the recovery time is massively cut short. :)

I would love to talk to a fellow FMF sufferer!

The funny thing is that I am of Indian origin, and my family is only now beginning to speculate that we might even have Turkish blood.

7:08 p.m.  
Blogger giornalista said...

From Rita

Hi anonymous.

I was only diagnosed with FMF when I was 10 and would have acute attacks, lasting 3 days and recurring, on average, every 3 months (sometimes attacks would reoccur more frequently, separated by a week or so). Before this, I would have almost weekly attacks.

I was started on colchicine therapy (originally 4 times daily, but now I usually take it twice a day) from 10-years-old. At first, I would still get sick with no real difference in terms of the severity of my attacks. Only the frequency improved. For reasons I can't explain, I stopped having attacks altogether between the ages of 19 and 23. Not one attack. Since then (I'm almost 27 now), I have had infrequent attacks. None of them have been serious enough to go to the hospital because a rheumatologist prescribed me prednisone, which I take as soon as I start having symptoms.

Prednisone has side effects. After a few days of taking it, I have insomnia, restlessness and get very emotional. The dosage is supposed to be tapered over a period of 12 days: 4 pills twice a day for three days, then 3 pills twice a day for three days, then 2 pills twice a day for three days, then one pill twice a day for three days. I followed this regimen once and didn't like the side effects. Now, I usually cut the treatment length by half, starting at four or three pills a day. It depends on how sick I feel.

If you want to talk more one-on-one (I'd love to hear more about how this affects you) just e-mail me at writersblogwriter@yahoo.ca, and my husband will direct the message to me.

All the best, Rita.

3:39 p.m.  
Anonymous Anonymous said...

Dearest Rita, dearest friends,

I also have FMF and I haven't been taking Colchicine because of my Nihilistic philosophy. But then, I met a girl, whom I love and who told me to take it, because of our love. Love is so important for those who suffer with FMF. It's beyond understanding, if one could imagine what we go through. The state that we are--while in pain--is itself suicidal. But love can prevent it.

One other thing that I find weird, is that this painful disease can't be treated. Well, I assume there is no even an attempt on financing scientists to work on a cure. And on this note, couple of days ago I was reading a news where it said that U.S. Government will give $3 billion dollars to FMF... Apparently that FMF stud for Financed Military Force... I guess killing people costs cheaper than treating people, but if they could just spend half of the money for killing people on treating people, I think the world be a brighter place.

In addition to this post, I'd like to say that there's a Group on Facebook.com that you can subscribe to. And actually, I spoke to my doctor who said that she will also join to give a professional advice to the members.

Anyway, I would like to say that I hope you feel better and bright and flourishing!

Much Love,

9:02 p.m.  
Anonymous Concerned Mother said...

Hi everyone, I am a 29 year old mother with a 4 year old son who also suffers from FMF. My husband and I both don’t suffer from FMF, but wish every single day that I had the disease instead of my son. We were lucky to diagnose him at age 1 when the reoccurring fevers without any other symptoms didn’t make any sense to me. We did a specific genetic test on him and the lab confirmed the FMF mutation. It has been a battle for us ever since to try to figure out a normal dosage of colchicine for a toddler who is starting preschool. Currently he takes one pill in the morning and a half a pill at night and it seemed to work for couple of months but now we are almost back to square one. Since January of 2008 he has been having episodes almost every other week, and when combining that with the regular cold and flu every 4 year old gets, it leaves him with 2-3 healthy days in a week. I think I feel more frustrated b/c this disease is so well hidden and taboo to talk about in the Armenian culture. I have been searching for parents who have kids with FMF and with such an early onset, but no one seems to want to talk about it. I’m considering opening a support group for parents and the people suffering from the disease. I would love to talk to anyone who has had the FMF from an early age and also the dosages of colchicine they have taken. Any comments would be appreciated.

Concerned Mother

3:00 a.m.  
Anonymous Anonymous said...

Hi everyone,
I am a 33 year old female who suffered from FMF since infancy. I come from Lebanon. The first attack I can remember I was around 13 or 14 years old.I was helping my mother clean the floor when I collapsed and fell screaming like crazy. They carried me to bed for few minutes then to see the family doctor. He diagnosed it as being colon problems. He gave me some laxatives and other medications and we were sent home. Miraculously I got better the following day. But my mother tells me that during infancy I used to get severe attacks of abdominal pain and no doctor knew why. Also, at the age of 10 I was hospitalized for kidney problems.
However, when I reached 15 my family moved to live in Montreal, Canada and obviously the col weather didn't help. Between the ages of 18 and 27 I got almost 3 or 4 attacks per year. They were so severe I would fall on a bed or a sofa and not be able to move an inch. If anyone touches me or moves me, it felt like turning a sword in my guts. I would scream so hard and high. To make a long story short I was only diagnosed of FMF at the age of 24. I was administered colchicine that worked miracles on me after suffering for years on hospital's beds, being administered morphine shots 2 to 3 times a day, having tons of tests, etc.
Living with FMF is not fun especially that there is so little known about this disease and no cure. It is such a painful and serious illness that I encourage that we create a support group that not only can support but inform and maybe lobby for more studies in this field. Between the ages of 27 and now (33), I only suffered 2 very mild attacks that I barely noticed thanks to Colchicine. Now, however, I am recovering from a severe attack. I am in bed trying to see what's new in regards to FMF on internet when I fell on this blog.
Here are my own observations in regards to this disease, please read them and confirm or deny some of them according to your own experiences:
1) Attacks happen more frequently when weather changes (usually in spring) or when I get cold and wet (during rainy cold seasons).
2) Attacks last 3 to 7 days and not 1 to 3 as I read on some technical websites.
3) Pain is in abdomen, but sometimes also in lower back.
4) Sometimes I vomit due to pain severety.
5) Medical personnel usually think you are making it up when they can't find anything wrong with you after they test you for all "normal-thought-of" diseases they could think of.
6) Need to be warm during attack or pain gets worse.
7) Need to especially warm feet during attack or pain gets worse too.
8) Attacks usually come after stress periods.
9) Colchicine has very bad side effects but works miracles with the pain/disease.
10) Having someone massage your abdomen with the palm of their hands exercing some sort of pressure helps alleviate the pain.
11) Exercising or even walking before an attack is completely gone will cause a relapse.

I am trying to understand what kinds (if any) of food are good to eat to lessen the attack or maybe what food to avoid all together.

My rheumatologist said that I need to have at least 1 colchicine everyday so as to protect my kidneys, my lungs and my hips, needless to say that my hips are now so bad that I need an operation. I wasn't too sure about this especially that colchicine has sever side-effects and it is some sort of a poison that I thought it might actually cause something else to go wrong in the body. Anybody has an input on this?

I hope that together we can learn how to live with this and what to do in order to diminish its problems.

Thanks to everyone who has or will contribute to this blog

1:20 p.m.  
Blogger LafnSu said...

Hope you still scan this blog. I have FMF and 3 children and 3 grandchildren. I'm pretty sure my daughter has it but not actually diagnosed because of her mental issues...long story. I wasn't diagnosed until in my 40's, but the change in severity and longevity of the flares is remarkable - however prednisone makes be swell more. I have developed cataracts from inflammation in my eyes from FMF, but after surgery the prednisone drops helped so far. I would highly suggest you get plugged in to one of the FMF groups - fmf_support at yahoogroups is for sufferers and/or family members and has been a true life saver for me emotionally and physically. There are also Spanish and Italian groups, but I'm not sure of the url's. Although I had several miscarriages, my three children are well worth it all;O)

8:44 p.m.  
Anonymous Bee said...

Hi everyone,

I hope you all are checking back here frequently so that you will see this. I want to echo lafnsu's (hi! Susy!) invitation to join our group. It just happens to be one of the best groups of people on the 'net. We are all a great big fmf family waiting to welcome you all in with UNDERSTANDING and commiseration and sharing of life experiences as well as fmf information. Check us out at fmf_support@ yahoogroups.com. See you soon! :o) Bee

1:04 p.m.  
Blogger Susannah said...

its all very interesting.
It came about 2,500 years ago in a small community in the middle east.

BTW I have the DEL M694V mutation. My mother is of strong english descent many generations back, and my father is of strong white russian descent...so go figure that one..it comes from my mum who is not of middle eastern origin at all!

I'm sure its part of a conspiracy! LOL! now I must have chocolate...

Oh BTW, I have found that Colonic Irrigation really does help relieve the attacks and helps to prevent further ones...ummm I better not eat too much chocolate then....
thank god for colchicine!

3:54 a.m.  
Blogger conerned in florida said...

dear concerned mother, where exactly did u have your child tested and how much was it?? what number might i call??

8:56 a.m.  
Anonymous Anonymous said...

I am very frustrated because my son has been having fevers that can last anywhere from 1 to 4 days with abdominal pain. Between these flare ups he is perfectly fine. He had blood tests that came back with elevated sed rate and elevated C-reactive protein. My husband and I are of middle eastern decent(Palestinian) but do not know of a family history of FMF. His doctor suspected FMF at first but wants to rule out an Inflammatory Bowel Disease first. My son is only 7 years old and I am very worried that he will be misdiagnosed. My son has lost 10 pounds over the last few monthes. Has anyone else experienced weight loss during their first episodes with FMF. He has also been very constipated. I have not seen weight loss and constipation in any data that I have read about FMF. Have any of you or your family members with FMF experienced this, and do all of you have a family history? Any advice would help during this hard time. I wish you all good health and a cure in your future.

12:54 p.m.  
Anonymous michigan mom said...

Hello Concerned in Florida,
I noticed you question and I just had my son tested. There is a website that helps you find genetic testing labs and doctors around the U.S and the World. It is:

Hope this helps you. We haven't got the results back for my son yet but at least we were able to find the professionals to do it.
Good luck!!

6:49 p.m.  
Anonymous Anonymous said...

Hi everyone, I'm 28 year old female, who recently married a man who has FMF since his childhood. Now my husband is 39 years old,also diabetic (1-st type).Now he is suffering from a severe pain attack,his last attack was 2 months ago, when he was hospitalized, and prescribed Co-Proxamol.His pain attacks are so severe that I can say I don't see him all these days, as he lays in bed suffering from pain, which lasts 7 up to 14 days.If anyone could advice me which pain killer work best in this case I would be very thankfull .
Any advice will be appreciated.

8:41 a.m.  
Blogger giornalista said...

Sorry I haven't kept up to date, but I only infrequently check the e-mail account that these comments get sent to.

To the anonymous person whose son is presenting with FMF symptoms, the only way to know for sure if it's FMF or some other illness is genetic testing (thank you michigan mom for the link you provided). My wife was misdiagnosed for years until they figured out it was FMF. And even after that, they still misdiagnosed an FMF attack as appendicitis, leading to a wholly unnecessary surgery.

As for the anonymous 28-year-old female, your husband's kidneys are already affected by his disease, and may be further affected by the Co-Proxamol. But, perhaps not. Your best bet is to have a rheumatologist with some knowledge of FMF see him. Whenever my wife has been hospitalized, she's given saline, to keep hydrated (dehydration prolongs the attacks) and codeine, to reduce her fever. Morphine has been tried on her, with terrible side-effects. Of course, she would continue to take colchicine, as prescribed. The only other drug she'll take, only at the onset of symptoms to prevent an attack, is prednisone, but the side-effects are sufficiently unpleasant that this is mainly a last-resort solution. Unfortunately, your husband will likely have to "ride out" his attack, but with all the pain medications available, there's absolutely no excuse for anyone to have to suffer the sort of pain you're describing.

Hope this helps.

12:32 p.m.  
Anonymous Anonymous said...

Reading this blog is very interesting, it seems like I could have wrote it, it's like looking into the mirror. I had my appendix removed when I was 12 because of abdominal pains. I'm now 22 years old and about once every 6 weeks I get an episode of FMF. Symptoms include pain while breathing near my last rib & sometimes upper back/shoulders. Motrin 800's help out alot along with hot showers. I went to the dr. and he had me get a cat scan of my chest because he thought it had to do with my lungs. I'm going to go back and have him check if it is FMF. I'm also from Armenian decent & my younger brother has the same symptoms as I do.

10:52 p.m.  
Blogger giornalista said...

I'm saddened and not surprised by this comment. The Armenian community needs to launch an awareness campaign about this — along with the Turkish, Arab and Jewish communities, which are all potential FMF gene carriers; nothing would bring together these traditionally hostile groups like the acknowledgment that a genetic disease they have in common is the result of a common ancestor!

If doctors don't know about FMF, these communities will have to give them a clue.

9:50 a.m.  
Anonymous Anonymous said...

Hey everyone, I'm 16 years old, female and I have a friend who is suffering from FMF, he's 15 yrs. old and he's egyptian.
He's my bestbuddy so I'm concerned of his situation.

Just yesterday, we were about to hang out with our friends, but unfortunately he didn't show up. He told me that, he can't make it to our hang out coz he's in a serious situation and he can't move from his bed.
He said that he's feeling cold from his bones, he can't breathe properly and he can't even sleep or sit or even stand normally.
He also said that, he feels like vomiting. And the way he felt that time, is like hundreds of knives are stabbing his shoulders, his ribs and his stomach. And everytime he moves, it feels like someone is tearing his abdomen apart.

To be frank, I don't know anything about this disease or sickness, as you all know I'm just 16 years old. So, I decided to search on this disease or sickness on google and I found this blog. I'm glad to learn and know more about FMF through this blog. Thanks to you all.

But still I'm not contented coz I have a few questions going around my head and I'm really worried about his serious situation, so if anyone who reads this who knows about FMF, would you kindly answer these following 3 questions:
x-Does getting upset causes FMF attacks? If yes, will it occur immediately after getting upset or not?
x-Does getting tired and staying up late causes FMF? (coz my bestbuddy have extra classes everyday after school and he usually sleeps late.)
x-And lastly, is there any cure for this disease or sickness, other than pain relievers?

Your answers will be appreaciated.
Many thanks.

6:45 a.m.  
Blogger giornalista said...

Here are some answers for the 16-year-old anonymous commenter's questions:

Does getting upset causes FMF attacks? If yes, will it occur immediately after getting upset or not?

Getting upset by itself won't cause an FMF attack, though stress can help trigger it. Stress isn't good for anyone, so minimizing it's impact on your friend's life (say, through calming activities) may help reduce the frequency of attacks. It won't necessarily prevent it though.

Does getting tired and staying up late causes FMF? (coz my bestbuddy have extra classes everyday after school and he usually sleeps late.)

In my wife's case, being tired and not having enough sleep definitely increases the chances that she'll have an attack. When she was younger, she wasn't able to play sports or be in gymnastics very long because she kept getting sick (though some activities, like swimming or yoga/pilates seem to be OK and maybe even help). I would suggest your buddy cut back on some of his activities, or at the very least, get to bed earlier. Being well rested will help him avoid having attacks. Basically, if your friend's immune system is weak, through stress or sleep deprivation, he has a greater chance of having an attack.

And lastly, is there any cure for this disease or sickness, other than pain relievers?

Pain relievers are not a cure. Tylenol may help reduce fever and Advil may help reduce inflammation, but they don't deal with the cause of the disease, only the symptoms. Your friend needs to be taking a drug called colchicine: usually, one 0.6 mg pill twice a day (one in the morning and one at night) for the rest of his life. He'll need to visit a doctor, usually a rheumatologist or gastroenterologist or other specialist, who can prescribe the proper dosage.

Even with colchicine, he will still have attacks, but they won't be as often. Also, this drug will protect his kidneys, because FMF causes kidney damage that can be fatal if not treated with colchicine.

Most likely, if your friend has been diagnosed, he's already taking colchicine. The only other medication my wife sometimes takes, and only when she feels the onset of FMF attack symptoms, is prednisone, which is a strong anti-inflammatory drug. However, she prefers not to take it because of the terrible side effects. If she's having a severe attack, she prefers (if that is the right word) to go to the hospital, where they can put her on an IV (because it's important for a person having an FMF attack to stay hydrated, since it helps reduce fever) with demerol, a pain reliever that reduces inflammation and discomfort.

Good luck.

10:12 a.m.  
Anonymous Anonymous said...

Thank you so much for your help, and I hope someone will find a cure for this disease.

God Bless you all.

3:17 p.m.  
Blogger CONTACT said...

HI I have never spoke with someone with my disease.
I been taking the "yellow pill" for 24 years(& I feel great).
Feel free to email me anytime please.

10:41 a.m.  
Anonymous Anonymous said...

Hi all
my name's laith
i am 25 yrs old male ;from jordan
i am a physician ( surgery resident now)
i am in love with a 22 yrs old girl who suffer from FMF ...
i want to listen from a mothers with FMF to understand their experience of being mothers with FMF who have children who are carrier of FMF..
BTW i studied that FMF may affect fertility ... is that true?
please any advise concerning this..
"i love her ... wana marry her.. she has FMF " :(

1:41 a.m.  
Anonymous Anonymous said...


10:43 a.m.  
Blogger giornalista said...

While diet plays an important role in managing this disease, I think it's best not to make health decisions based on anecdotal evidence. Cooked green beans and laxatives may relieve symptoms, or the person taking them might just think they do — never underestimate the placebo effect!

Colchicine, on the other hand, is clinically proven to be effective in treating FMF.

10:56 a.m.  
Blogger zoe@neabeyrouth said...

This comment has been removed by the author.

2:15 p.m.  
Anonymous Anonymous said...

I am a mother of a 14 year old boy who has been suffering with chronic pain in the lower abdomen for the past 4 years, never accompanied by a fever. He has had every possible blood test,xray and scan you can think of and nothing. Perfectly healthy thank god.

He has had 3 attacks a year for the past 4 years. During one of the attacks he is always hospitalized. His attacks are very consistent and happen almost the same time of year each time.

He was finally diagnosed with FMF, reluctantly by a Rheumatlogist in the Summer and started taking Cholchicine one tablet twice daily.

Now this is where the interesting part comes in...his dad is from Lebanon and I am Canadian. He was genetically tested and the results were negative!!! Back to square one.

He has had two attacks since he started treatment of Cholchicine and his first attack was much shorter only 2 days in the hospital instead of 4. Now he is recovering from his second attack in 2 months and this one was much more painful and the recovery is longer and hospitalized again for pain management.

I am wondering if anyone else who suffers from FMF has had similarities to our story. How regular are the attacks and so on. Any info would be greatly appreciated

frustrated mom

5:23 p.m.  
Anonymous Anonymous said...

Frustrated Mom


Not much you can do or him just take the little pills.
Im a 29 year old male. I was diagnosed when I was 1.8 years by a really intelligent pediatrician who added up my parents backround:
Father-100% Palestinian
Mother-50% Saudi Arabian-50% 25%Italian and 25% Spanish
My mother recalls the attacks where once a week or so. Hopefuly I started with colchicine right away and the problem was solved.
Ive been taking the colchicine for more than 27 years.
My kidneys work fine my life is really good too.
Regarding attacks when I was a kid I had 2 or 3 a year since 13-15 I started having 1 a year and mostly because you forget your pills.
I bet your son hates taking them for the rest of his life but thes the only way to go.
I suspect he is getting attacks often because he need more colchicine.
Im 6,3 tall and weigh 200lb I take 3 pills a day of 0.6 by the way
You should expect diahreea anyway because colchicine do that but its nothing compared to the benefits of having a normal life.
If your son needs a friend to talk too about this ill be glad to help him out. This is not as bad as it seems. Jachs1980@gmail.com


8:11 a.m.  
Anonymous Anonymous said...

Here is an additional resource about the genetics of Familial Mediterranean Fever: http://www.accessdna.com/condition/Familial_Mediterranean_Fever/148. I hope it helps. Thanks, AccessDNA

2:42 a.m.  
Anonymous ArmoFMFguy said...

Hi All my fellow sufferers,

I am of Armenian descent and have just turned 23.

When I was a kid, I had periodic but infrequent stomach pain/fever attacks, but associated this with normal kids tummy ache. It was only after I left University at 21 and started to work, that I realised that these tummy pains were becoming more frequent.

At 22, I had a stress bomb of a boss, who drove us all insane. My symptoms:

1. Attacks occur exactly once a month and last between 2-10 hours (I can suffer some milder after effects for 24-48 hours).
2. I get excruciating tummy pain and vomit violently 1-5 times per attack.
3. Prior to every attack, I am tired (lack of sleep), stressed (due to my stress bomb boss), have been extremely busy (no free time to relax) and experience a number of burps.

I have had every test imaginable, and my gastroenterologist has found nothing wrong at all with my body. By the way, I don't smoke, do loads of sports and drink in moderation. After speaking to my grand-mother (the elderly seem to know about this), I informed my Gastroenterologist that I may have FMF. Being an English Doctor, he researched and advised me to take Colchicine (the UK expert appears to be Dr Hawkins from the Royal Free Hospital in North London). In the meantime, we conducted a DNA blood test which showed I have a single mutation (but this is apparently not fully conclusive). "Mutation identified: The DNA in the sample provided was heterozygous for the MEFV variant p.A744S in exon 10 (p.Ala744Ser, NM_000243.1:C.2230G>T). Most FMF patients have either 2 mutations in exon 10 of their pyrin gene or a single exon 10 mutation plus the very common exon 2 pyrin variant/polymorphism A148Q[...]" (quote: Dr Hawkins).

Important to note:
1. Fellow sufferes should engage a more relaxed lifestyle, take Colchicine, and ensure their parents immediately get their DNA checked => I am in the process of doing this.
2. I have upped the Colchicine in-take from one 0.5mg pill twice a day to two pills twice a day. The results of this test were one very mild attack (I was at home in a relaxed environment) and, one month later, one very strong attack (I was at work with my stress bomb boss).
3. I am currently experimenting by taking three pills twice a day (one weeks before the expected attack), which could be too much..? In the meantime, I have switched jobs and am back relaxing at home for a few weeks, prior to starting my new job :)

I will keep you posted and please don't hesitate to share your views and experiences in as much detail as possible. Whilst I am happy to give you my email adress, I feel it is more beneficial for everyone if we share our FMF experiences on this blog.

All the best,


8:14 a.m.  
Anonymous Anonymous said...

I'm wondering how often anyone has heard of a baby with no "mediteranean descent" contracting FMF??? My little girl turned 1 in Dec. and since Nov. has had periodic HIGH fevers, an elevated ESR and CRP with the fevers, lack of weight gain for 6 months, and anemia not associated with iron deficiency. Other varying symptoms include pain with movement, refusal to eat, and rashes. The next time she has an attack, we are going to just give her colchicine to see if it makes her better. Reading all the posts have me concerned if this IS what she has, but I still find it hard to believe that is what she has since my husband and I have English, Scottish and German backgrounds!

Any thoughts???

11:47 p.m.  
Blogger giornalista said...

To the last anonymous commenter, it is possible, if unlikely that your girl has FMF. However, to be sure, she would need to be diagnosed by a doctor (probably a rheumatologist) with FMF expertise. There are genetic tests that can determine for sure whether she has the disease.

I would strongly suggest not to give your girl colchicine without a prescription, since it could do more harm than good, especially to her kidneys.

God bless.

12:36 p.m.  
Blogger Joe Teeny said...

Great to find a place to share about FMF. I had suffered bouts of abdominal pain and fever for 3 years My pain began at the age of 34. Being a guy I refused to go to the doctor...Then when my wife finally made me go in...They did a CT Scan of my abdomen as my lab results were bad with very high liver enzymes and things. The MISS-Diagnosis was that they told me I have Diverticulosis and that I needed to refrain from fatty foods and avoid nuts and popcorn...Some of my favorite snacks. I had figured out that the pain always went away and that rest would help. The bouts continued from once every 3 weeks or so to eventually every week...Then one day the pain changed...It became a pain like that of getting kicked in the groin...but the pain did not stop. After calling the advice nurse and was told to get to the ER...Blood test showed Eosinophelia (VERY High White Blood Cell Count) They thought I had Cancer and I had to have an MRI and Endoscopy and Colonoscopy...before I met a doctor who had studied at the MAYO Clinic where an FMF Study had occurred...He listened to my story and asked where my parents were from...When I said Lebanon...He paused and said..."I think you have a very rare disease...I've never seen it and no one in this hospital has either...but I studied this at the Mayo Clinic" He was right! and for the last 2 years I have been on Cholchicine and have only had 2 or 3 bouts of pain that was not nearly as bad as I was able to double my dose of Cholchicine and head off a full blown episode. Now I seem to have a lot of arthritic pain in my shoulders, hip and hands...I'm taking Diclofenac for the pain and it is helping. Anyone else have the arthritic pain? at only 39 yrs old I sometimes feel much older than I am.

3:08 a.m.  
Anonymous Anonymous said...

What side effects have you all experienced while taking colchicine?

5:05 p.m.  
Blogger worried said...

hello, i have a niece who is 2 years of age. her grandmother on her dads side was diagnosed with FMF, and this women's grandchild's daughter whos about 4 years old was diagnosed with FMF. My niece has been having mild symptoms, including abdominal pain, fevers, constipation, and insomina. Although her abdominal pain has not yet been \ severe. I wanted more information from anyone who knows symptoms and severity of fmf in such a young age.

2:23 a.m.  
Anonymous Anonymous said...

Hi, I'm a 21 year old woman with FMF. I was diagnosed about 4 months ago. We never did any genetic testing for it or anything only the clinical testing. I have the same symptoms as everyone in here, it's amazing. For so long we've been trying to figure out what is wrong with me. I've been sick and having problems since i was 9 years old but no one could ever figure out why. I got really bad about two years ago. I was always in and out of hospitals and they were always running the same tests always thinking it was gall bladder disease or my appendix but all the tests always came back normal or only a little skewed. I was actually hospitalized for 6 days in February of 09. Last July I hit a doctor who believed in my pain and tried testing me for another rare genetic disorder called Porphyria. The prelim test came back positive so they tried treating me for that but nothing they did ever helped. When they came out with the genetic testing for Porphyria I did it and it came back negative for any strain of the disease and we had to start back at square one. Everything was getting so bad I was hospitalized in January, 2010, this year but they still couldn't figure out what was wrong. I was continually going about my life unable to do anything or go anywhere and had to take off from school because I was so sick.

Eventually my doctor finally asked where my family was from on both sides, something no one had ever done before, and the answers were that my dad side was Jewish from all over northern Europe and my mom's side was Europe and all over the Mediterranean. They put me on Colchicine to see if it would work and after three weeks of the 0.6mg dose twice a day I started to get better and then I kept getting better till I was finally able to go to the movies and go back to school. I feel amazing now. I still have some pain and I actually just had a pretty bad attack last week but I was able to take care of it at home instead of going to the hospital and I'm recovering faster than I ever did before. But because of going so long without treatment I actually did have problems with my gall bladder and my appendix and had the surgery to remove them in April, '10. I do have some questions though for the people that have been diagnosed for longer. And I would appreciate any answer you have.

1. Does anyone else have chronic pain between attacks? I have chronic pain in my abdomen and back even between attacks and nothing helps but pain killers.

2. Do the fevers fluctuate on a day to day basis or stay pretty stable at one degree for the whole attack and recovery?

and finally, do any parts of your body stay swollen all the time even with the colchicine treatment and between attacks? My ankles and stomach tend to stay swollen a lot longer then I think they should with the colchicine.

I appreciate this forum so much. It was nice to hear other people are dealing with the same stuff I am. I felt so alone. No one knows about it here in Florida and we are all kind of scrambling to understand it. Thank you so much for your stories and I'm sorry that anyone should have to go through this. My heart goes out to all of you.

3:33 p.m.  
Blogger giornalista said...

Hi Anonymous,

Glad to hear a doctor managed to figure out what was wrong.

The condition itself is chronic, so the pain that goes with it will be too. That said, there are things you can do to relieve the symptoms.

Try to reduce mental and physical stress to a minimum, reduce consumption of foods that promote inflammation (eggplant, green peppers, tomatoes, red meat, etc.) or that cause a lot of gas. Cutting down on alcohol might be a good idea too.

If you need to take pain killer, take Advil (or any ibuprofen), since it reduces inflammation.

You may need to increase your dose of colchicine when you feel an attack coming on. You should see a rheumatologist who has experience treating FMF (or at least gout) patients.

My wife's fevers fluctuate during her attacks. The same treatments for regular fever should help: cold compress on the forehead, Tylenol, and NOT covering the person with blankets. As much as they claim to be "freezing," uncovering them, so their body can cool off is best.

Fortunately for us, healthcare is "free" in Canada, meaning my wife can walk into the emergency room when she's having an attack without having to worry about any out-of-pocket cost. She usually gets triaged right away and hooked up to an IV within 15 minutes. If she's been throwing up (from the pain), they'll give her Gravol (which also knocks her out) and saline, to rehydrate her. Then, it's demerol for pain, until the attack passes. And lots of colchicine. Her last attack, she got eight 0.6mg pills in 24 hours.

As for swelling, my wife's ankles get swollen from time to time, sometimes for no reason. Again, a good reason to see a rheumatologist.

4:26 p.m.  
Anonymous Anonymous said...

Hi anonymous,

My doctor discovered i had FMF when I was 1.8 yr.
Ive been in colchicine ever sincd and i live a normal life with attacks every 2 years or so.

Im glad you feel better know.

Drop me a line if you want to talk: jachs1980@gmail.com


4:48 p.m.  
Anonymous Anonymous said...

Thank you so much for answering my questions. I was wondering about going to see a rheumatologist but unfortunately there aren't any here that specialize in FMF. I guess I should try anyway.
My body is very sensitive to medications and my body seems to want to reject the colchicine. If I take any more than the 2 pills of 0.6 mg a day then I am so sick with the symptoms it's not even worth it. Also, I do take Ibuprofen but I have had an ulcer and kidney stones in the past from taking the Ibuprofen so often to control the pain, so my doctors are hesitant about me taking too much of the NSAIDs.
I wish I lived in a country with Universal Healthcare, it has cost us thousands of dollars because of the hospital trips and specialists. That is why I don't want to go to the hospital unless I absolutely have no choice and my doctors are understanding enough to give me Vicodin for when I have attacks and I also have Darvocet for the chronic pain I have.
I appreciate your answers so much. I'm so glad I stumbled upon this forum.

7:49 p.m.  
Anonymous Anonymous said...

I posted a comment about my 1 yr old displaying the symptoms of FMF but not being of Meditteranean descent. I forgot to check back until today! Since I last posted, we have been in constant contact with her ped. and a ped. rheumatologist. They put her on colchicine and while it seemed to be lessening the severity of her fevers at first (they come once a month now), this last fever she had went back up to over 104 and she was in great pain somewhere. We'll keep trying the colchicine for one more fever cycle, but if it doesn't help with the next fever, the dr. will take her off of it and we'll have to try another route. I'm discouraged at how long it is taking to diagnose her, since these febral episodes knock her out for 2 weeks and come once a month! I guess we will try to be patient as they keep trying to find out what's wrong............

11:07 a.m.  
Blogger giornalista said...

FMF also affects people of non-Mediterranean descent. Genetic testing would provide a conclusive answer. If it is FMF, colchicine is the only treatment (other drugs, like pain killers and anti-inflammatories only treat the symptoms).

That said, even colchicine isn't 100% effective. Flare ups and attacks can and likely will still happen, unfortunately.

2:00 p.m.  
Anonymous Anonymous said...

hi my husband from the middle east (egypt)suffers with fmf and he is too taking colchicine.but i was hoping if anyone in western Australia (Perth) would know who to see a specialist,that we could see?.please email.me @ mariebuttons@y7mail.com

9:54 a.m.  
Anonymous Anonymous said...

From reading all the emails, i can sure see that each individual has their own symptoms and things they do that make them feel better. I have been sick since 3 mos. old. I was told I had possible Rheumatoid Arthritis and Fever of Unknown Origin, with sever bouts of abdominal pain. I wasn't diagnosed until the age of 21 and was put on colchicine. I went into remission for 10 years with very few flareups. Then the colchicine seemed to stop working and from that point on I have been on steroids on and off and very sick with frequent flareups. Stress and lack of sleep sure don't help. I have seen a number of rheumatologists over the years. I was on Enbrel for 2 years with great results, but had to stop taking it because the insurance company stopped covering it. I have tried Humira with no effect. I am now starting Kineret but have not been on it long enough to see if it works. But have found papers on the internet showing that it is supposed to stop flareups and control the disease. A Dr. Daniel Kastner at National Institutes of Health in Washington, DC, is an expert in the field also. I am seeing a new Rheumatologist in Jacksonville, Florida at Shands. I suggest that people go to places like Cleveland Clinic, May Clinic and other research and teaching hospitals like Shands for diagnosis. Most regular Rheumatologists don't know anything about treatment of this disease. To everyone on this blog suffering from FMF, just a suggestion: Don't take any other persons symptoms and cures at face value.....they are different for everyone!!!!! I am 56, have been sick all of my life, I am still here and except for the side effects of the steroids (and not my illness) I feel good and enjoy life. And I've been through everything you all have been through.....constant inflammation, severe abdominal paid, hospital admissions, pain medications, etc. Make sure you have good family and friend support and keep a positive attitude. They help me get through everything. Good luck to everyone!

4:57 p.m.  
Anonymous Anonymous said...

I have a few other comments about FMF that I just forgot to post. I am the 56 year old female, sick since 3 months old and now on Kineret. I have no mediterranean background either. Family is of German, Polish and Irish descent. There is also another illness called FHF (Familial Hibernian Fever, which is essentially the same, but with different family backgrounds involved). It is also referred to as TRAPS. Also, the reason I have been given, Enbrel, Humira and Kineret is that I was tested for Rheumatoid Arthritis and also have that disease. There are foundations out there willing to give you those medications for free since they are so expensive or if you have no insurance. I hope I've included everything that I wanted to after reading all your emails.

5:03 p.m.  
Anonymous Anonymous said...

Hi, I am a 33 year old mexican female who was adopted. I have 4 children and was diagnosed about 4 years ago with fmf. I went thru 2 to 3 years of being in and out of the hospital as I would be running high fevers of 104 and no reason as to why. i had my appendix taken out and was diagnosed with tubal infections. i usually would be hospitalized for 2 to 3 days and on morphine pump. my doctor finally diagnosed me with fmf. I have been taking colchine and when my pain gets bad encouh i either have to take pain pills or end up in the hospital getting morphine or dilant. both of course make me extremely nausea. i will feel great and then like a snap of a finger im hurting and sick. as i have gotten older when i have flare ups my blood pressure begins to drop and i become unaware of my surroundings at times. Usually this is what i have noticed.

- severe abdominal pain
- fever
- blood pressure drops
- pain meds or anti inflammatory

the doctor that diagnosed me stated when i have flare ups that i should the following:
- for the 1st day take 2 colchine and then take 1 every hour upto 3 pills
2nd day thru symptoms are better to take 2 colchine every 12hrs.
this seems to help some, but sometimes it gets bad enough im visiting the er. so frustrating.
im so glad that i found this as know one here in the central illinois area knows anything about this disorder.

9:01 p.m.  
Anonymous Anonymous said...

I'm thinking my 2 1/2 year old son might have FMF. I'm Italian and my husband is Armenian. My son suffers from high fevers with no other symptoms since 6 months old. I've been told its a virus. Now that he starting to talk he tells me his tummy hurts. So far his symptoms don't seem to be as violent as what I'm reading, however a doctor at Sick Kids hospital said it could be a chance its FMF. Do the symtoms have to be that bad, do most attacks need hospitialization? Last fever he threw up some bile. I've noticed he seems to sleep more a few days before the fever hits and he also has a loss of appetite. We live in Ontario Canada and I would like to have (me and my husband esp) tested to know if we have the gene. Does anyone know where we can have that done. I'll also speak to his pediatrician again; he insists its a virus everytime, but my gut tells me otherwise. Any advise? Please e-mail me at sabrina_grillo@hotmail.com
Sabrina Shirinian

2:41 p.m.  
Blogger raffis13 said...

This comment has been removed by the author.

6:43 p.m.  
Blogger raffis13 said...

Hi, I am a 17 year old Armenian male and I have had FMF for my whole life.

My story starts out when I used to live in Armenia and I remember having to take all kinds of medicines as a child and not knowing what was wrong. My mom tells me that when i was younger I used to get pains almost every week (young as in a baby to 2 years old) but as I got older I remember getting pains once a year or so. I was diagnosed with FMF at around 11 or 12 don't remember exactly how old but it was in Boston and turned out both my parents were carriers and lucky me I get the FMF :). As a teen I only got attacks on random occasions with no patterns whatsoever. I remember once going for like two years without a single attack but once the attacks did happen They would last for a week to a maximum of 3 and than go away. At that time my symptoms at the start of the attack would be around my heart ( which would be the inflammation of my chest cavity) and shoulder pain. Then the pains would increase and usually the pains would be separate where only certain parts of my body ached during the attacks. And of-course the fever. As far as foods go I have not yet realized what helps me and Sleep Deprivation for me doesn't seem to be the main cause of the of the attacks until recently. Since my whole junior year of high-school I barely got any sleep and only had one attack around the end of the school year which lasted for almost two weeks and caused me to fail my math exam. But recently around the Start of my Senior year I am getting attacks almost exactly once a month and even though a pattern of attacks has developed the colchicine that i was put on and rarely took ( because i didn't see the point in taking a pill with the side effects for attacks that i would get like once a year) has become a big player in the attacks and though the attacks only last 3-5 days I still cant see any big reasons why they happen though some people claim it's sleep deprivation or eating the wrong foods but for me there seems to be no real reason behind It. Also I can't really tell if the colchicine is helping or not since now i get attacks every once a month and only have crappy tylenol to curb the pain with. I also was put on Prednisone once and after trying it once and not being able to go sleep I stopped taking it. My doctor also coined that I might have Familial Hibernian Fever also known as TRAPS if I'm unlucky I probably have both. I'm Actually on the second day of an Attack as I type this and this latest attack seems to be fairly mild. Some of the more recent symptoms are absolute inflammation of my abdomen and chest and lungs to the point where doing anything ( even breathing anymore than at a light rate) hurts and also does anyone else have a problem walking upright? when I get attacks I have to almost walk bent over and I also loose appetite and loose wait < these too probably go hand in hand. I'm starting to wonder how I'm supposed to go through college if my symptoms happen on such a constant scale.

6:55 p.m.  
Anonymous Anonymous said...

How are you? I have had FMF my whole life too. Im 30 and it started when I was 1.2 years.
Ive done all my school and college fluently and when I didn't owned my own business I went to work for 10 years straight with no problems at all.

My attack frecuency is 1 once a year and sometimes ive gone 2 years straight with out no attack.

Recently this year Ive had 4 attacks and I think its because West-Ward colchicine is nott that good.

Maybe Israel or turky or armenia have better colchine that the USA.

I take 3 tablets of 0.6 a day and my attacks last for 3 to 4 days never a complete week.

Drop me a line to my email we can chat more:jachs1980@gmail.com

Never quite colchicine bro. its the only way to go.

7:07 p.m.  
Blogger giornalista said...

Colchicine helps prevent attacks and amyloidosis, which can lead to kidney failure and death. Apparently, the variant of the gene that afflicts Armenians is less likely to lead to amyloidosis, but I wouldn't count on that, unless you've had genetic testing done to confirm this.

The side effects of colchicine are usually diarrhea, but there are various remedies that can combat this.

Colchicine is a generic drug, and I doubt there is any difference between brands or countries of origin.

Stress and diet can definitely be factors, but the disease can also flare up for no reason at all. It's annoying like that.

8:15 p.m.  
Anonymous Anonymous said...

Giornalista Hi,
You dont have FMF and you cant tell if there a difference or not. Watson brand is much better with your stomach I know you gf has FMF and you are aware of everything related to it but dont speak that lightly because there plenty of other FMF patients that say watson is different than west ward and so on.

8:32 p.m.  
Blogger giornalista said...

My apologies. I defer to your experience. I was thinking even though there are different brands, since it's a generic, they'd all have the same formula, but I may be wrong.

Thanks for adding your two cents, albeit anonymously.

7:26 a.m.  
Anonymous Jaime said...

Hi Giornalista,
I didnt want to sound rude but theres plenty of mothers and close relatives that assume different kind of fact that are not even close to reality.

I really dont care If you dont believe theres different qualities of Colchicine but I really care about you saying stuff that someone can mistake them for facts.

If I where you I will be very careful on what you type here.

I know about many FMF patients that go through life complaining about there this problem. I never tell them look at me I feel fine for years I really dont believe you cant have a normal life because in my experience I am perfectly normal and healthy....because thats my situation and not others.

So theres plenty of uncertains things about FMF and you should have a more open mind. In the FMF yahoo support forum I recently read theres a Asian kid with FMF so thats odd right?
How does colchicine work like this is uncertain too.
You have 1 close case of FMF and you ignore to much to be talking about it.

I hope you reread you post to this 17 year old kid you sound like a patient or like a doctor and you are not. You dont even say hello to him. What do you think you are!?

Jachs1980@gmail.com (anonymouse dont leave emails bro)

12:16 p.m.  
Blogger giornalista said...

Sorry I've offended you Jaime. I appreciate how delicate an issue this illness is to its sufferers. And I'm sorry if I come off sounding like a know-it-all, but really, I'm not. Just a guy with a wife who has FMF.

I'm not surprised that an "Asian kid" might have FMF. It's a genetic disease, and who really knows what's lurking high up in the branches of our family trees?

I don't have a closed mind at all, believe me. And I don't claim to be a doctor or patient. I also don't think I'm being "rude" by not saying "hello." Most of the comments here don't start with greetings, because, really, who knows if the previous commenter will ever even read whatever you write as a response.

But I agree that I could be more sensitive and conscientious of the words I use here. Cheers.

12:43 p.m.  
Blogger Lina said...

hi laith and all
i am 52 years old i had fmf since i was 3 years old got marreid to a wonderfull man have 4 kids all healthy and fine ,,, so laith dont worry about her fertility and having kids ..go ahead and marry her and may god bless you both

5:35 p.m.  
Anonymous Anonymous said...

hello lina
may i ask you if u continued on taking colechicne during pregnancy and Brest feeding ?? how many tablets ?? please reply me here or on my email
and i really wanna talk to u so can u plz send me ur email address
thank u

5:13 a.m.  
Anonymous Ashley said...

I have a response for Jaime. I know I'm not really part of the conversation that you and giornalista were having but I find that you were a little to abrasive and sensitive about his comment to the anonymous person. I have left posts here in the past with questions and giornalista answered to the best of his ability and from his experience with his wife. As someone with FMF and is engaged to an amazing man who has been with me through the whole diagnosis process I can honestly say that to live with someone and help someone and constantly be there for someone with a disorder like this or just sick in general, these people learn the same amount as the person that has the illness themselves. They may not know exactly how it feels or how the medication helps or if there is a difference but he never told anyone that he was a doctor or that he had FMF, so if someone thinks that they can get true medical facts from a forum like this then they shouldn't have internet access. It upsets me that you would think that just because he doesn't have this disorder that automatically means that he doesn't know anything about it or it's treatments. My fiancée has learned when I am going into an attack, when I am running a very high fever, and he knows the medications and doses of these medications I need to deal with this disorder. He also knows the same amount about this disorder as I do. I also have to agree with giornalista about the differences between the different brands of colchicine. I don't think that there is a difference in the pills other than the brand name. In the US the FDA has changed the make up of colchicine anyway. It used to be that the drug colchicine was mixed with another drug that helped push the built up uric acid out of your kidneys. This second drug mixed with the colchicine was mainly for people taking it for gout since it's the build up of uric acid that causes gout. Now the only colchicine pills we will be able to get is a pure compound colchicine pill. Colcrys company now has control over the production of colchicine and the pill will now be pure colchicine, no other medications mixed in. So, do you think that the reaction for different people will be different when they are getting the exact same kind of medication? I am grateful to giornalista for sharing his wife's story and hosting a forum where FMF sufferers and their family members can come and tell their stories and ask questions and maybe give some answers. You should be grateful, too.

11:09 p.m.  
Blogger giornalista said...

Ashley to the rescue! Thank you, kind lady, but I think the point of the exchange you were referring to (or, at least, my take away from it) is that this disease's emotional component requires handling that is as delicate, if not more delicate, than the disease itself.

My wife has been going through a rough patch lately. Lingering symptoms building into full blown attacks, then back to lingering symptoms for the past few months. She has barely had any symptom-free time for a while, and it's been affecting her ability to lead a normal life (let alone her self-esteem). It's tough on both of us, but as someone who barely ever gets a cold, I still can't really relate. Sympathize, for sure. But empathy isn't easy, if I have nothing to relate it to (other than the mental pain of watching your dearest loved one suffer constantly).

Lately, we've been avoiding the usual ER trip, thanks to a supply of drugs we've accumulated: supeudol (oxycodone) for really bad pain; Advil or Aspirin for less serious pain; prednisone, occasionally, for inflammation; Gravol for nausea; Tylenol for fever; and the occasional ativan (lorazepam) for anxiety/stress (for her, not me). We're hoping it will just resolve itself and provide a bit of respite, but starting to lose hope. The only thing keeping me from bringing her to the hospital, other than the thought of her having to spend the night in an ER, is that the doctors can't really do anything, other than give painkillers and Gravol. The only difference is the IV to keep her hydrated, but she's able to drink water or, more likely, ginger ale.

I'm not sure if she'll even be able to make it, but next week is her last week at work, thankfully. We've decided (with my insistence) that it's best if she doesn't have that pressure anymore, even though she's only been working three days a week and has very understanding bosses who let her take off all the time she needs. It will put a bit more pressure on me, but I'm OK with that. Anyway, she'll be able to do some work for me from home. Knowing her, she'll go nuts if she doesn't have something to do.

At the same time, there's still the hope that we might start a family. We're convinced her hormones play a big part in her illness, since attacks seem to coincide with her monthly cycle (which invariably gets delayed). Pregnancy, if it happens, whether naturally or artificially, would help solve that. Otherwise, there's adoption and going back on the pill, which might help her situation a lot.

Have I mentioned that, when she was on the pill (prescribed after having an ovarian cyst removed) that she had no attacks for five years? It might be because she was in her early 20s and was more resistant/resilient.

Honestly, who knows... It's late and I'm over-sharing.

One other thing that we're happy to report is that we've finally (maybe) found an MD in Montreal with specialized knowledge of FMF. His name is Dr. Portenoy, and he specializes in infectious diseases, though I'm not sure if it's David or Joseph, since both are listed with the same specialty by RateYourMD.com. He wants her to submit to a gene test, which she'll be having in April. I don't think it's possible for her to have anything other than FMF, but if it allows this doctor to help in a way that other doctors haven't been able to in the past. Granted, I usually have to explain to doctors what FMF is and how to treat it, so the bar isn't very high. Maybe he'll surprise us...

12:06 a.m.  
Blogger gulshie said...

Hi all FMF sufferers,

I am new in this board.

I am from Turkey and 36 and female. I’m suffering FMF too. I was diagnosed when I was 19.

Glad to say I haven’t had bad FMF attacks for 2-3 years. Sometimes I get mild attacks but not as bad as my old attacks.

Im having problem with conceiving. Doctors can’t find anything wrong with me and with husband.

My question is; has anyone suffered fertility problems due to FMF or colchicine?
Has anyone had unexplained fertility like me and find out later on that FMF, colchicine was the reason?

7:23 a.m.  
Blogger Deanna said...

My daughter is 7 years old and was diagnosed almost 2 years ago. As probably many of you, she has been through alot of testing and some were very invasive. She had fevers that would come every 23-28 days and last 3-5 days. With the help of mortin, tylenol, praying and crying...we got throught it. We only finally got the diagnosis after she was sick twice in a month and we were fed up and wanted answers. We saw a Rheumatologist and within 5 minutes she told us he thought it was fmf. I thought he was crazy but yet 6 wks later it was confirmed. We started the colchacine and havent have a fever since. She does have the abdominal pain, headaches and occasional joint pain. We only took her to the hospital once and that was after the diagnosis but her abdominal pain was so bad i was worried it was something else. The Physician we saw that day just so happened to have fmf himself. He was the only one who really took time with us and explained everything. He had suggested that we "
play around" with the amount of colchacine we give and try a smaller dose. Apparently the medication can actually cause stomach pain. We now only have to give her 1/2 a pill every other day. If she seems to be having an increase in symptoms then we may give it to her everday for a few days.
Theres not alot of information on fmf that i have found. Is there a diet that should be followed? Any information you have would be greatly appreciated.
We were told that as long as she takes the medication that she will be fine and have very little symptoms. Until coming upon this site we were not aware that the symptoms could be as bad as what some of you have experienced.
Please email me if you have any information..


3:36 p.m.  
Blogger giornalista said...

Found an interesting study on FMF therapies that included info on colchicine and fertility, as well as pediatric dosing.

Here's an excerpt:

Colchicine was not found to cause female infertility; it is highly recommended to continue the drug during all phases of pregnancy, since peritonitis resulting from an acute attack may induce premature contractions of the uterus and eventual abortions.

Solid data concerning the teratogenic potential of colchicine is lacking; Rabinovitch et al. reported four newborns with trisomy 21 out of 2000 (1:500) deliveries in FMF patients, which is twice the expected rate of a compatible normal population. It is not clear whether colchicine therapy itself plays a role with this increment; our policy is to perform an amniocentesis at 4-5 months of gestation. We do not find a substantial reason to recommend ceasing therapy with colchicine prior to conception as well. Regarding the outcome of offspring of FMF males who are on chronic treatment with colchicine, no differences were observed compared with a matching cohort of healthy males. Colchicine can be safely taken during lactation and can be safely given to children; the prevention of acute attacks is associated with a growth spurt following the commencement of therapy. In children the dose is adjusted according to their weight. The minimal dose is about 0.25 mg daily in 1-2 year old babies. From the age of 6-7, children can be treated with the full dose of 1.0 mg daily.

10:42 a.m.  
Anonymous Anonymous said...

Hi laith, as for your fiance, I feel for her.i was diagnosed with fmf since the age of 2. Im 27 now and still suffer. I have three healthy children. To answer your question, fmf does not cause inferitility. I got pregant three times with no problems. I have 13 women suffering realtives in my family and none had problems with getting pregant. Hope this helps!

10:21 a.m.  
Blogger gulshie said...

hi giornalista and anonymous,

I am having treatmants for 3 years so i can get preagnant but no succes yet.so i wondered if my FMF would be the reason of my unexplained fertility. giornalista and anonymous I've read your messages and seems like FMF doesnt cause interfility problems.So hoping to have a baby soon :)

11:25 a.m.  
Anonymous Kristen said...

I wanted to reach out to the mother of the 1 year old... My 8 year old has just been unofficially diagnosed based on the exact symptoms you have mentioned: CRP, Sed. rate, anemia, refusal to eat, etc. Our insurance has just approved the genetic testing, so that's our next step. We have absolutely NO known genetic link to the Mediterranean area, but like you, we have Scottish and German in our lines. Did you see the blogger who mentioned very similar diseases that affect people who are not of Mediterranean ethnicities? I'm definitely going to look into that, as I am just learning about FMF for the first time. Please keep posting obout your little one. I would love to compare notes and progress.

2:32 p.m.  
Blogger Nadia said...

This comment has been removed by the author.

2:45 p.m.  
Blogger Nadia said...

This comment has been removed by the author.

2:53 p.m.  
Anonymous Fady said...

I'm a 26 years old male and I have had FMF for about 14 years now. Been to all kinds of doctors, hospitals, tried everything anyone through at me, some helped for a bit others did nothing. I'm gonna try to share all I was given or told maybe something will help someone around. I have a sever case of FMF meaning all the symptoms at a high level, unlucky me I also suffer form all the side effects of colchicine, in addition to that it didn't really reduce the frequency of the attacks; I some times get 3 consecutive attacks in the same month and the longest period I have gone through without an attach was 3 month and that only happened like twice. colchicine is pretty harsh on the digestive system specially if you are talking a double dose of 1mg a day, a way to help with this is to take a pill of Zantac 150mg 15 min before every pill of colchicine. A substitute for Zantac would be Pariet 20mg but just one pill a day cause its stronger, this help in a lot of ways when it comes to your digestive system. NEVER take colchicine on an empty stomach. I was told by a lot of doctors that attacks happen more frequently during weather changes and none of them told me if there was any kind of food that helps trigger it. I don't know if that happens with everyone one or not but I always have a burning sensation in my kidneys during attacks and otherwise, a great way to work around this is to drink at least 4 litres of water everyday, this have helped me a lot through the past year. Something that you have to watch out for is that after every attach your immune system will be very venerable that you would easily get a cold right after it so try to get at least a 2 day bed rest after each attack. A thing that you should do is go to your doctor and figure out a treatment for your bowels cause if you have had FMF for as long as I have you will need it. Now things that you should get constantly checked out is your cholesterol level, mine reached 630 at a point, and do a sonar on your liver for time to time to check for fat accumulation. I'll not be talking about what you should be talking as painkiller during attacks cause it varies from on person to the other, doctors usually recommend anti-inflammatory injections which help with the fever but these don't work for me in anyway. What I can tell you to do and have worked for me for some time is that the second you think you are going to have an attack, which is usually 4 hours before the real pain starts, get a good meal in you mainly fibbers and as soon as the real pain kicks min take a laxative. Keep your feet elevated at a 45 degree angle by putting pillows or under it or something cause it help with the stomach cramps a bit. I usually get sever back pains during attacks I would suggest taking a pill of Voltaren 100mg once a day for 3 days but again they don't work for me however the did help with one of my friends, I usually take tramadol but I don't suggest taking that cause it very addictive. Now for the good news, they have been doing a study on FMF in the Cleveland clinic and they say that they have came up with a new recreational drug that would be much better than colchicine and with much fewer side effect, it should be available in pharmacies around november, so day say. I hope that I have helped in anyway cause I believe that no one can really understand what we go through unless they also have it. And please if any way can help me out by providing any mind of information please contact me on vadem@live.com specially if you can tell me what to take as painkillers during the attacks cause nothing really works with me anymore and I am truly suffering.

12:06 a.m.  
Anonymous Anonymous said...

I can input some good info regarding helpful hints in living with thiis disorder...
1. Live in a climate that is around 20 degrees year round. A stable climate with not too many sharp drops in temperature means your body will be operating a lot happier,
2. Have as much a s possible a stress free life. Take steps to ensure you are happy. Stress brings on attacks.
3. Be careful about eating beans such as broadbeans etc. I cannot eat them as it brings on an attack...also have a low fat diet...drink plenty of good quality water.
4. Listen to your body and when you need to rest do so...
5. I have found that if you feel an attack coming on...go to bed, take a nurophen zavance capsule and a colchine WITH a small amount of food...and rest....take another nurophen zavance in 4 hours time....
6. Re swollen and sore legs/ankles/feet....elevate higher than your head....place facewashers rinsed in cold water with ice packs around the sore areas and REST.
7. Colonic Irrigation really does help a lot...when I was first diagnosed I was having attacks every month, had massive stress in my life and I honestly thought I was going to die....I changed my life considerably to remove the stress and had a bout of 6 colonics with Bianca James at St Leonards at her colonic clinic....one colonic once a week for 6 weeks...after the first one I felt so much better, after the 6 I felt amazing......and I didn't have an attack for over a year....then its just having a follow up colonic every now and then....say one every 6 nonths or so...it really does help.
8. Positive affirmations...make it a way of life...ou can have this disorder and still have a good and happy life...make sure you are doing what makes your heart sing...becuase if you are not you will get attacks a lot more often.

7:18 a.m.  
Blogger aisha said...

Subaru Forester Turbocharger
Thanks for honestly relating your experiences and opinions and good luck to you.

3:12 a.m.  
Anonymous Anonymous said...

My wife started getting better after eating OATMEAL every day.

2:47 p.m.  
Anonymous Anonymous said...

Well I am seriously fed up with the doctors/specialists at Westmead Hospital. I have DELM694. And so do 2 of my 4 kids. All of my kids even the ones who don't have this mutation are now showing sign of illness that no one seems to know what it is. After being informed that I am related to the only other family in the world that have it and they are "running the show"...and basically none of my questions will be answered either historically or more importantly medically, for me and my children so we know what to look out for, what to do and what not to do.... I have walked away. I don't feel that we are being treated well at all and to me, there is a complete lacking in integrity a bout it. I feel that there is another thing happening worldwide with this condition and that is they are tracking and monitoring us without giving us the benefit of full disclosure ...especially from a medical point of view.I need a specialist in this field who will be above board and keep us fully informed. I now live at Coffs Harbour with my 4 kids....please if anyone knows a good doctor who is experienced in this condition who lives in this area please contact me on: goldenpuma33@hotmail.com

Thank you and stay well.

12:42 a.m.  
Anonymous Anonymous said...

I am 50 next month,female, Sephardic Jew. My doctor just started treating me for fmf. The colchicine has helped me feel so much better. We are waiting for the DNA tests. My question, does colchicine work if you don't have fmf?

12:29 a.m.  
Blogger giornalista said...

Colchicine is for gout or FMF. If you didn't have one or the other, it wouldn't have any effect.

7:41 p.m.  
Anonymous Anonymous said...

Hello Everyone
- I had left a comment a little over a year ago. - Raffis13- here

I just want to say that after my last post. A lot has happened, I have gotten some new specialists and some new medications. I think I have some great information for people out there. Now to start off colchecine does not work for me there was some study I read somewhere that said 10% of FMF sufferers do not react to colchecine. After my old doctor was not able and didn't seem to give a shit, and just kept pushing colchecine and didn't even bother trying to help treat the pain I switched. My new specialist who has had one other FMF patient immediately put me on painkillers ( which actually allowed me to not miss school on a regular basis thank god.) Afterwards my mom by chance happened to come across a medication called Anakinra also known as Kineret and after talking it over with my specialist and the insurance company I got the medication shipped. Now Kineret is for people who suffer from a pretty bad case of arthritis, They are single use syringes ( yes it's a shot.) This medication worked wonders for me once I sense an onset of an attack I will usually give myself two shots which will stop the attack and reverse it allowing me to go about my day in minimal to no pain in most cases. This seems to be the only medication that is working for me, Colchecine did nothing, Prednisone did nothing, Dieting did nothing , etc.

As far as attacks I have found there are two different varieties I get one is the usual inflammation for me it usually starts in the lungs or liver area. The second variety is an inflammation of the intestines which is much harder to get rid of with Anakinra ( I am on the fence whether this is fmf or something else.)

I would suggest talking to your doctors and insurance companies about this medication if colchecine is no good.

Some things I have realized is the more I am physically active
( exercise, walking etc..) The less attacks I get. I would also like to say that giving yourself a shot is no walk in the park but its the lesser of two evils so consult your doctor.

For the mothers who are curious as to what there children might be going through or anyone else with questions please feel free to email me at raffis13@yahoo.com

12:14 a.m.  
Anonymous Anonymous said...

Hi fady im 34 & I've had fmf since i was 5 yrs old.. my attacks are as u mentioned sometimes twice a month ��yet during these past 4 years my attacks were once every couple months .i sometimes skip colchicine & been under alot of stress lately. Lost many opportunities in life because of this pain ... i have a question i don't always get a high fever or abdominal pain it usually hits my chest area .where i can't even dare to sleep on my side untill the attack is completely gone , do you get such pains in the upper area such as chest etc? & which November will this medication be in pharmacies? Thank u & i wish you much health

7:35 a.m.  
Blogger Unknown said...


I also have chest pain and no abdominal pain. I have recently been diagnosed as most likely having fmf, altho still waiting on genetic testing. I had a few episodes this year (I am 24) of high fever, severe chest pain, and even some nausea. The last episode was the worst and brought me to the hospital, where they found that I had severe pericarditis and pleural effusion (liquid around the heart and in the lungs). I started colchicine a couple months ago but have had almost a continuous attack since then with a small break in the middle, and have been taking prednisone to deal with the pain and inflammation. Some people (like us) have chest pain and no abdominal pain, and some people (like me) are resistant to colchicine. So, I am going to start kineret/akinra as its called here in the netherlands, and i hope I works.

Has anyone here taken kineret/akinra for a long time?

Also, I am Ashkenazi, with eastern european origins.

Thanks to everyone for sharing!

10:13 a.m.  
Blogger giornalista said...

Hi all. Apologies for the delayed response. I realize an update to the main post is long overdue. I will try to get to that shortly. Kineret (anakinra) can be very effective for colchicine-resistant FMF. For some, it's the only alternative. There are other injectable medicines, such as Arcalyst (rilonacept) that are also being studied, but I'm not as familiar with those. I would suggest seeking out a specialist or enrolling in a clinical trial (these medicines aren't cheap, especially if you have to take them daily).

No medicine is without side effects, but you have to weigh those against the effects of the disease.

9:33 p.m.  
Blogger giornalista said...

I completely forgot my wife, Rita, posted her experience with Kineret (anakinra) back in 2012 (it wasn't showing up on my mobile browser when I tried replying to the recent comments).

A lot has changed in our lives since then, the main one being that we live in California, and the hotter, drier weather compared to Canada, and possibly the abundance of fresh produce, seems to really help reduce inflammation and her FMF attacks. And having a supply of anakinra helped, too.

That said, there was a period when Rita was having a hard time taking more than one colchicine pill a day. The NIH put her on a new treatment protocol: anakinra once daily, instead of on an as-needed basis only at the onset of an FMF attack. Unfortunately, she wasn't able to tolerate the many side effects. She hasn't done as well with anakinra since then, and has a love-hate relationship with it: although it's very effective, she considers the side effects (diarrhea, bone pain, rash, vision problems, and headache, to name a few) almost as bad as an full-blown attack.

With changes in diet and the help of prebiotic fiber, probiotic keffir, hemp protein, fish oil, and plant-based iron supplements, Rita's digestive system is able to handle two colchicine pills a day. She maybe has two flare-ups and maybe one attack a year, which she'll stop with an injection of anakinra. A huge difference to her and our quality of life.

To quote that old line at the end of pharma ads: ask your doctor if Kineret (anakinra) is right for you.

11:57 p.m.  
Anonymous Natalia said...

Hi Renne please contact me. My son has FMF. We treating him with homeopathy, but it's not helping. Please contact me.

7:01 p.m.  
Blogger giornalista said...

Natalia, I strongly suggest seeing a rheumatologist, preferably with FMF experience. Untreated FMF (homeopathy won't do anything for your son) can be debilitating and, long-term, it can be fatal, since it may cause amyloidosis, which can cause kidney failure. Colchicine or anakinra have side effects, like any drug, but the benefits out-weigh the risks. Otherwise they wouldn't get approved for use.

8:31 p.m.  
Blogger A.A said...

Hi everyone. I'm wondering if anybody experienced more than one attack in the same week?

7:01 p.m.  
Anonymous Anonymous said...

I have had FMF since birth I have suffered through every imaginable symptom and pain level and have been on every possible medication none of which work. Demerol was the only drug that seemed to help a little with the pain.....up until now. I now have medical percription for marrijuana. I take the cannibos oil and it takes all the pain away and it is 100% natural . If you are suffering I urge all of you to try it. Dont be skeptics talk with your doctor and tell him/her you want to try........God bless you all

3:34 p.m.  
Anonymous Anonymous said...

hii all am so happy to speak up and share my experiences..I have been suffering for 15 years and lately been mostly diagnosed with FMF although the genetic test was negative..
I want to ask some questions plz?
1.Does anyone has FMF with negative genatic test ( my lab examines 12 mutations only )?
2.please describe clear symptoms because beside the abdominal pain , I always have back pain and sever shoulder pain and don't know if it is relevant or not?
3. Most of the time i feel cold especially my hands and legs when everyone beside me is not, does anyone feel the same ?
thank you

10:59 p.m.  
Blogger Lara said...

Hello everyone,

I am so happy that I found this blog.

I am an Armenian woman of 45, born in Canada. Both parents are Armenian from Lebanon.

My symptoms started at the age of 3, with severe bouts of abdominal pain, fever, and on occasion with chest pains and feet rheumatic pains (to the point of not being able to walk).

Up until the age of 18, none of the medical experts in Canada were able to identify the problems, so I was in and out of hospitals most of my childhood life. Doctors had diagnosed so many different illnesses, including appendicitis, cancer and even mental illness. Teachers even thought I was having these bouts as a way to capture attention since one minutes I would be healthy and playing, and within minutes/hours, I would be crying and screaming from the pain.

At the age of 18, an Armenian doctor saved me by putting me on Colchicine, and since then, I have had severe bouts only 2-3 times a year.

Throughout my life, I have researched extensively about FMF. When I got pregnant with my first child, my doctor told me to stop taking colchicine out of fear that it would harm the fetus. As soon as I stopped, I had the worst FMF attack in my life, and the doctors feared that if I did not miscarry, then the child would be born with severe illness or defects, due to the 3-day fevers and pains (thankfully, my child was born healthy).

I have had 3 healthy children and have had them assessed for the FMF gene, and they are only carriers of the gene through me and not my husband. Apart from the severe attack I had during my first pregnancy where I had halted the colchicine, I never stopped taking colchicine throughout the rest of my pregnancies. Colchicine or FMF did not give me any fertility problems.

I still have severe attacks 3 times a year, but I have assessed the reasons behind these, despite the fact that I religiously take colchicine daily (1 mg twice a day) and identified a variety of mechanisms to help halt any potential attacks:

1. stress and nutrition are major factors that trigger the attacks. I have altered my nutrition to exclude milk products, gluten and processed sugars. Keeping healthy intestines are a major advantage. I use probiotic tablets which also help extensively.

2. I also have tried to lead a stress-free life (not always possible, but consciously, I make great efforts to not allow daily problems to strain me like they used to.

3. Whenever I sense an oncoming attack, I immediately take a tablet called Dicloberl Retard (a derivative of Diclofenac), which is a steroidal anti-inflammatory agent. I have noticed that this has greatly helped to avoid an oncoming severe attack.

4. I have also noticed that I feel much better in warmer climates (coming from Canada or living in Armenia has not helped).

I hope that this helps anyone and I would be happy to take part of any further discussions.

All my best to my fellow FMF-sufferers.

2:02 a.m.  
Blogger bookem5 said...

My daughter suffered with FMF from before grade 1 through grade 6. It always seemed a different problem. Intense knee pain one year. Intense stomach cramps and pain another year. Missed school and dropping out if dance and figure skating. Became the norm. We saw every specialist for every part of the body. Our Dr. was at his wits end because every year she seemed to have a new ailment and no one ever found a reason. Finally around grade 5 or 6 she suddenly started suffering from pluersy attacks. Having had it once after a surgery it killed me to see her suffer. By the greatest of luck the physician on call at our little hospital was originally from the Mediterranean region originally. As he came in the room he was looking through her giant file. Have any of these specialist ever found anything he asked. No I said. Well she has FMF he said without even getti g within 10 feet of her. I was speechless, how did he know what was wrong g and what was FMF. He explained that it was common enough in his home country but rarely recognized in Canada. He said that he had spent 20 min looking through her file before coming in and that it was obvious seeing the big picture instead of each symptom. He perscribed colchicine and we never saw him again.
Everything went well for 2 years.
Then came a winter flu. Throwing up and all the rest. She never got better though. Day after day she could only keep down small amounts of water. A 12 year tiny girl can't keep that up. Once again we were at the hospital daily. Ivs kept her fluids up but she was asleep 28 hrs a day or more and mention of food would make her vomit. Specialist again. No answers. One on call doctor actually dbled her colchicine claiming it wS an FMF flare up. When I exolainec that the symotoms werent consustent with FMF and FMF fkate ups dont last for 4 weeks he told me there was much about medicine I didn't know and I should leave it to the professionals. Our Doctor stayed up all hours and called us at home several times to see if any changes. Finally after 25 days of no food and a loss of 18 lbs I had a weekend off work. We had tried and researched everything. Late at night I suddenly wondered what is colchicine anyway. Within 20 mins I found out that nobody knows why it does what it does but it does so great. The mayo clinic said it was a toxin and recommended stopping medication if there was gastric distress for any reason. I put the pills on a high shelf that night. 24 hrs later she ate her first bit of food that stayed down. 36 hrs later she went to a school volleyball game and cheered the whole time. Within 48 hrs she was back on her feet, eating and like her old self. Our family doctor was the only one not to lecture me about diagnosing and treating without their knowledgeable consent. They hadn't done anything for 4 weeks so I didn't take their advice lol.
Our family doctor felt bad and exited that he had never been told of the FMF diagnosis and knew very little about colchicine and less about FMF. Her dosage was cut back to .3mg a day from
.6 and she has been great until this past month. It started as occasional sharp kidney pains but after 2 months the pain is there steady and increases occasionally. Blood in the urine. Specialist again and our long time family doctor has left the area. There seems to be little knowledge on the subject and no health care worker will even think about listening to a 6 ft 260lb biker with a big beard. If anybody has seen these latest symptoms I'd love some help or advice. The internet is great but I can't cram a specialist degree in rare disease into coffee break internet searches.
Thx again

7:39 a.m.  
Blogger bookem5 said...

My daughter is almost 17 and she went through the whole line up of specialist before one doctor happened to see all the files together and was familiar with FMF. Colchicine takin daily breaks up the protein in your blood that is produced by the liver. Thus protein left unchecked will build up in the kidneys and can eventually cause kidney failure. There are theories that as the proteins build up in your kidneys more of the protein gets through causing more frequent attacks. This may be the issue you are experiencing as you have been without colchicine for some time. I won't speak to which brand or company logo u should use, as long as it's FDA approved you should be fine. There will be some fine tuning as to how much is needed to prevent attacks in ratio to how much causes and gastric side effects. Best of luck. With this disease you will find the more research you do the better prepared you will be for the medical staff who think FMF is the new cable channel like HBO.
As to what race it affects. Well I'm German Scottish and my wife is Canadian French. My daughter still has it though and even the experts admit that not being able to detect the gene responsible does not mean the person doesn't have it. FMF and colchicine both are somewhat if a mystery to the medical profession and there aren't enough people with it to make research profitable.
Feel better

7:53 a.m.  
Blogger bookem5 said...

I'm German Scottish and my wife is Canadian French. My daughter has FMF and spent several of her very young years having attacks, seeing specialist, being doubted by her friends and teachers. It's very possible but please speak to a doctor u trust first. Take documentation from trusted medical sites. There are still a few health care providers that are will I g to admit they might not know everything lol

7:59 a.m.  
Blogger bookem5 said...

It's not an exact science unfortunately. If you can document every attack. Time length, severity. At that age any medication has a risk and their bodies change so quickly that what works today may not be enough next month or vice a versa. The more documentation you have and data to compare the easier it may be to find a pattern.
Good luck

8:04 a.m.  
Blogger bookem5 said...

With my daughter I learned after awhile that a doctor who continually insists that it is one thing and never cured that thing should be discarded for a second opinion. My daughter didn't go to the hospital as often as she stayed home and suffered through it till she was diagnosed. We live in Sk now and have lived all over Canada. As to DNA testing, it's not conclusive and we were told only done in special cases as the cost is prohibitive. I suggest trying to find the doctor at the suck kids hospital again. I've found doctors who work full time in children's hospitals very approachable and very helpful.

8:12 a.m.  
Blogger giornalista said...

Finding a specialist, usually in rheumatology, who has experience with treating FMF is key. Sick Kids Hospital in Toronto is a good place to start for a pediatric patient, but I’m sure they could refer an adult to the right doctor too. For anyone who isn’t responding to colchicine or who is experiencing severe side effects to the point that it isn’t tolerable anymore, I would strongly suggest looking into clinical trials. There are a few ongoing ones being run out of the National Institutes of Health (NIH) in Bethesda, Maryland, which is just north of Washington, DC. Some of the top FMF specialists in the world run the trials and will probably meet with the patient and family members. That’s been my experience for my wife, who was given free supplies of anakinra, a daily injectavle anti-inflammatory medicine that she takes as needed when she feels an attack is coming. There are other such medicines being studied.

This is the main, open-ended trial: https://www.clinicaltrials.gov/ct2/show/NCT00001373

The main investigators are Dr Kastner and Dr Ombrello, who we’ve met with and who are very knowledgeable about all things FMF. I highly recommend getting in touch with their clinic and seeing what if anything they can do for you or your loved one with FMF. The hospital has a residence for visiting patients and family (they treat people from all over the world). I forget if there’s a cost associated, but the main thing you’ll pay for is airfare to get there. The consultations, any tests or exams and and treatments are free.

10:41 a.m.  

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