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Familial Mediterranean Fever

Posted by @dkmeow in Bones, Joints & Muscles, Jun 5, 2012

Hello everyone! I am new to this and am in desperate need of assistance. Since I was 15 I've been suffering with lower abdominal and lower back pain that spreads down to my feet. The pain would get so severe I would end up in the hospital time and time again. They could never figure out what was wrong. In 2009 I decided I needed to go to a geneticist. He did testing according to my background and found I have a mutated gene diagnosing me with FMF (Familial Mediterranean Fever). I've been on colchicine (a medication known to assist in the prevention of attacks) once a day till recently when the attacks would happen more often. It was increased to twice a day. I cannot find a doctor in my area familiar with it. I need help, I have questions. Are there certain activities I should refrain from doing? Special diet I should be on? Extra vitamins I should take? Anyone out there suffering from FMF as well?

Posted by Anonymous-c80b249b, Jun 8, 2012

Hi DKmeow,
Sorry to hear you aren't feeling well. I was diagnosed with FMF (via DNA sequencing and clinical symptoms) when I was in my late 20s. I've been symptomatic for over 4 years, but on Rx for FMF for a little over 2 years. I take 1.2mg of colchicine/Colcrys every day plus anti-inflammatory drugs. Stress is a contributing factor to FMF attacks, but sometimes attacks are unavoidable no matter how many preventive measures you take. I try to get a good amount of sleep each night (7-8 hours), exercise 2-3 times per week and learned to relax (as to not stress myself out!) I don't know where you live (US or abroad) but I live in a major metropolitan city on the west coast and none of the doctors I've encountered have ever treated a person with FMF. I think you should consider regularly seeing a Rheumatologist who can monitor your attacks and take regular blood labs. If something needs further review, they can refer you to a specialist depending on the organ/system involved. It's not perfect but you have to be your own advocate. I find it very frustrating when doctors I see don't know anything about FMF so I feel your pain. As for diet, I've heard that a low-gluten or no-gluten diet for people with FMF is a good idea - something about the gluten and inflammation. I went gluten-free for about 6 months and didn't notice a sizeable effect. But it's worth a try. Because very little research has been done around FMF and it's considered an orphan disease, everyone seems to have a different take on what's best (diet, doctors, drugs). I would encourage you to search out reliable research (NIH, Mayo, Journal of Rheumatology, UCLA FMF clinic etc.) that have papers/resources on FMF.

Feel better and I hope this helps you!


Posted by @dkmeow, Jun 9, 2012

Thank you so much for sharing! It's been very hard for me lately. I feel like I have been getting low grade attacks often and they last for almost a week. Stress definitely does bring on attacks, I try very hard to control it but it becomes overwhelming at times. I get horrible stomach aches as well and I have no appetite. I will also do more research as well. I take colchicine .6 mg twice a day but I think I need to up my dosage to three times a day and see if that helps.

Posted by Anonymous-c80b249b, Jun 9, 2012

I've been where you've been and you're not alone. The crazy thing, being sick and dealing with your health is stressful so it is a vicious cycle. Be sure to modify your Rx under a doctor's supervision. Colchicine can have toxic properties plus it is just good to have a doctor monitor blood labs while on Colchicine. The other drug you should speak to your doctor about if you haven't already is Prednisone. I was on this steroid for about a year and while it does have likely side effects, it got my flare ups under control. Take care of yourself!


Posted by @dkmeow, Jun 9, 2012

Thanks for your help! I was given prednisone once before, it did help. I will speak to my doctor about blood work and about being put back on it. Thanx again- it does help to hear from other people in my situation.


Posted by @nancysm, Jun 9, 2012

I'm Nancy and I have FMF. I am the moderator of the FMF_Support list at
Please join us
FMF Support mailing list:
You will find wonderful information and lots of support from others on the list. The problem with increased attacks MAY be Colcrys. We do not yet know why but quite a few members who were required to switch had sudden increases in flares. You CAN order colchicine from Canada and we can tell you how on the list.


Posted by @dkmeow, Jun 9, 2012

Thank you nancy. I recently switched back to colchicine through Canada. But now they are about 2 months apart (my attacks) and lasting longer... I will check out the support groups on yahoo. Thank you


Posted by @frankd696, Tue, May 17 at 7:34am CDT

Hi there I'm from Canada and I just learned two years ago that I have FMF - My parents are from Sicily, Italy in the Mediterranean so I was a candidate. Stress is a monster for me.. the attacks are very painful and cause swelling in left leg.. hands and abdominal pain.. I use colchicine when I feel a swell up. It's manageable.

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