1. < Bones, Joints & Muscles

Familial Mediterranean Fever

Posted by DKmeow @dkmeow, 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?

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Becks | @becks | 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!

REPLY
3 replies
DKmeow | @dkmeow | Jun 9, 2012
In reply to @becks "Hi DKmeow, Sorry to hear you aren't feeling well. I was diagnosed with FMF (via DNA..." + (show)
@becks

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!

Jump to this post

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.

REPLY
NancySM | @nancysm | Jun 9, 2012

I'm Nancy and I have FMF. I am the moderator of the FMF_Support list at yahoo.com.
Please join us
FMF Support mailing list:
fmf_support-subscribe@yahoogroups.com
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.
Nancy

REPLY
2 replies
Becks | @becks | Jun 9, 2012
In reply to @becks "Hi DKmeow, Sorry to hear you aren't feeling well. I was diagnosed with FMF (via DNA..." + (show)
@becks

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!

Jump to this post

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!

REPLY
DKmeow | @dkmeow | Jun 9, 2012
In reply to @nancysm "I'm Nancy and I have FMF. I am the moderator of the FMF_Support list at yahoo.com. ..." + (show)
@nancysm

I'm Nancy and I have FMF. I am the moderator of the FMF_Support list at yahoo.com.
Please join us
FMF Support mailing list:
fmf_support-subscribe@yahoogroups.com
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.
Nancy

Jump to this post

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

REPLY
DKmeow | @dkmeow | Jun 9, 2012
In reply to @becks "Hi DKmeow, Sorry to hear you aren't feeling well. I was diagnosed with FMF (via DNA..." + (show)
@becks

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!

Jump to this post

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.

REPLY
frankd696 | @frankd696 | May 17, 2016
In reply to @nancysm "I'm Nancy and I have FMF. I am the moderator of the FMF_Support list at yahoo.com. ..." + (show)
@nancysm

I'm Nancy and I have FMF. I am the moderator of the FMF_Support list at yahoo.com.
Please join us
FMF Support mailing list:
fmf_support-subscribe@yahoogroups.com
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.
Nancy

Jump to this post

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.

REPLY
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