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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!
Replies to "Hi DKmeow, Sorry to hear you aren't feeling well. I was diagnosed with FMF (via DNA..."
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!
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.
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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.