Familial Mediterranean Fever community

Familial Mediterranean Fever (FMF) is a hereditary autoinflammatory disorder.

My life with the FMF and AA amyloidosis

Written by toyre, published 18 days ago.

Testimony of Camille

Greetings to all,
I am writing on the EURORDIS and NORD Rare Disease Communities forum for the first time because I felt it was important to let you know about the issues that might punctuate your life with this disease, Familial Mediterranean Fever.

My name is Camille, I am 65, I have FMF (homozygote mutation M694V ATG>GTG) as well as AA amylose (verified by a renal biopsy), my dose of colchicine is currently 1.5mg per day (1 morning, 1/2 evening).

Be careful, the dose of colchicine must be measured exclusively by your doctor, because all FMF cases do not require the same dosage, but a daily intake is always compulsory, since it slows down the development of AA amyloidosis for which, as you know, there is no cure.

Before being diagnosed in 1989 of this chronic disease defined as such, since then confirmed in 2001, I suffered in my youth of acute abdominal crises which would last three days, sometime four.

Now, and since 1989, following the colchicine treatment, these crises are aborted and replaced by spaced-out fever crises which, except for some rare crises during the day or in the early evening, come out at night.

Four years ago, I went to the hospital after suffering from two strong FMF crises in a row in a short time. I suffered from arrhythmia and tachycardia which led to a pulmonary edema (which was treated properly). It required an intake of iron and two transfusions to treat a very low blood pressure as well as extreme weariness.

The tests conducted during that hospitalization revealed themselves to be correct except that the AA amylose detected at the level of the kidney has also infected the small intestine, no dialysis since the evolution was not significant but the proteinuria was progressing

During the seven months I spent at the hospital I started suffering from nausea and perpetual vomiting that did not allow me to eat properly - nothing went down, I felt excessively weak (-9kg), I felt it was impossible for my digestive system to find balance again so that I would again have an appetite, which I needed badly.

It was decided to put into place a central tunnel channel for parenteral feeding 24/7.

When I returned home and for a year I was on a drip every night, following all these nutritional drips and others, I finally recovered my appetite, of course, it took me a long time to find a normal daily routine, gain back weight and in particular build back muscles through exercise and physiotherapy, which is fundamental. (NB the colchicine dose was then of 2.5mg/day).

AA amyloidosis was making me weak, so my doctor offered me enbrel shots (twice a week, 25 mg) starting in the beginning of 2009; enbrel is usually offered in cases of rheumatoid arthritis.

This treatment showed good results which were visible in blood analyzes and in the renal proteinuria, but after a few months, problems of muscular fatigue appeared in the legs.

Hence a three-month stop of the enbrel followed by a muscular biopsy to control the supposed effects of the enbrel, what results of this is that the enbrel is not the problem but the analyzes show a dose of colchicine that is too high.

So we lowered the dosage of colchicine to 1.5 mg a day (my current dosage) to balance the renewed intake of enbrel, which brought back weak FMF crises.

This episode of FMF/AA amylose shows us that it is important to fight even more so that a medicine against AA amylose be designed very quickly. Here is what I wanted to share about my current experience and the use of these two medicines.

Warmly to all,

Written by toyre, published 18 days ago.

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