Communauté Fièvre Méditerranéenne Familiale

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My journey with FMF (thus far)

I am the mother of a 7 year old boy with FMF. He has only 1 mutated gene with symptoms of illness.

He currently takes colchicine twice a day. He has had 2 medication increases this year due to breakthrough fevers. This scares me so much for the type of mutation he has can lead to hemodialysis. His cousin is on dialysis due to it and she has both genes with mutations.

FMF - conseils

Expliquez la maladie aux frères et sœurs de l’enfant – Demandez-leur d’être compréhensifs et attentifs et répondez du mieux possible à leurs questions.

Joignez-vous à un groupe de support aux parents – cela peut vous apporter beaucoup de réconfort et aussi aider à en savoir plus sur la maladie.

robpleticha
modérateur

Accès colchicine aux USA

Est-ce que vous êtes malade du FMF aux Etats-Unis avec des difficultés pour trouver une bonne marque de Colchicine? Nous aimerions que vous nous contactez, envoyez moi un message ici ou à robert.pleticha@eurordis.org

Note: Ce contenu a été traduit automatiquement par un service tiers.

Your issue with fertility is not the colchicine or medicine, it is the fevers that you have if not on the medication. It destroys the sperm. My wife and I adopted 3 children as my low sperm count would not allow her to get pregnant. After I began to take medication and the fevers were controlled my sperm count increased and after 17 years of marriage she delivered our Youngest daughter.

My daughter has just been diagnosed with a heterozygote form of FMF, which is very unfortunate, since we will be moving to the US for 3 years next Thursday (30th July 2015). We haven't started any medication yet and I just checked the prices for colchicine in Germany and in the US: roughly $27 for 50 tablets (0,5) in Germany vs. $169 for 30 tablets in the US. Are you kidding me!!

Are there any news on the "prices-down" and more choices front in the US?

Kind regards
Marion

Hi Ma-RS, Welcome to the US (soon). What state will you be living in? I live in Virginia. The problem of colchicine access is one of our most complicated ones. The answer to colchicine in the US depends on what kind of health insurance you have. If you have health insurance then that should pay for the expensive colchicine on the US market (the brand “Mitigare” has less reported side effects and is the preferred brand for now). Lots of FMF patients in the US get their colchcine from Canadian online pharmacies. One such pharmacy is canamericaglobal.com. You still need a drs prescription. Insurance won’t cover it but the cost is much less than the brands on the US market. It costs about 1$ per 1mg plus shipping. That is approximate and depends on which brand you choose. But the first thing to try is to get your doctor to prescribe a one-year supply before you leave so you don’t have to think about it for awhile. Your doctor probably doesn’t know this but patients know this very well – FMF patients can have very different responses to different brands of colchicine – so when you get a good response you want to keep taking that brand. We can help you with all these details. E-mail me at fmfpatients@gmail.com and we can connect you with any resources you need. When you first get an FMF diagnosis and are just starting treatment, it is VERY helpful to be in touch with other patients. There is a lot of trial and error when first starting treatment, and no one has more experience with this process than the hundreds of patients who gather online to offer a hand. Having communication and support from other patients will probably be the most important factor in getting the best treatment outcome. There are very few doctors in the US who know anything about FMF. By the way, many FMF patients benefitted greatly and reduced their symptoms from a gluten-free diet – a few have even had remission, so that might be worth trying, some people have had dramatic results. Get in contact with us, and don’t worry – for every problem there is a solution. Janine Jagger

Kaan 6 Monate Jung

Benötige dringend Vergleichsdaten für die Behandlung meines Sohnes.

Hallo zusammen. Zuerst möchte ich mich bei den Leuten bedanken die mit dieser Seite Menschen zusammenführen die das gleiche Schicksal teilen und auch denen die bereit sind ihre Erfahrungen zu teilen und helfen.

Für mein Sohn der bis jetzt nur einmal einen Fieberschub erlitten hat brauche ich dringend Vergleichsdatenblätter. Denn viele Symptome sind bis jetzt nicht aufgetreten und die Werte im Blut, ausgewertet in Tübingen, geben nur einen Verdacht auf das familiäre Mittelmeerfieber.

Ich würde mich daher sehr freuen wenn ich von einigen Betroffenen Auswertungen erhalten kann.

Zuschriften oder/und Bilder an aydoganferhat@gmx.de.

Für eure Bemühungen bedanke ich mich im Voraus.

Mittelmeerfieber?????

Ist es Es wirklich?Hallo zusammen ich bin Mutter zwei Töchter 5j. und 3j.

Meine ältere Tochter bekommt seit ihrem 3 Lebensjahr ( seit dem sie bei der kita ist) alle 2-4 Wochen fieber. Der Kinderarzt hat es immer für normal gehalten wegen der kita, nur letztens hat er gesagt das es fmf seien könnte aber er noch gern warten würde mit den ganzen untersuchungen. Ich bin schon total verzweifelt und weiss nicht weiter, ein anderer Kinderarzt hat sofort mit "nein" geantwortet, weil sie nicht so starke Bauchschmerzen usw... hat. Sie hat immer leicht Bauchschmerzen bis ich sie streicheln tue dann ist es wieder vorbei sonst hat sie auch keine anderen Anzeichen ab und zu Halsschmerzen aber dann dauert das Fieber auch über 3 Tage . Extrem starke Schmerzen hat sie zum glück noch nie gehabt kann es trotzdem sein das es fmf ist? Würde mich auf antworten freuen und bedanke mich im voraus....

need answer

i will ask aquestion but i really need answer from all member
by the way i dont have girlfriend and didnt want till now because of fmf
if you want to marry
Will you tell your girlfriend that you have fmf or not ?
Do you think she will accept you ?

If she is the right one, absolutely. I have friends that are wheel chair bound, or blind, or have MS who are all in loving and caring relationships. I have anticoagulant lupus and have still manged to find a great person to share my life with. You will too!

you are right but its not easy to find agirl how can approciate that
so i hope i can find agirl like me have fmf

24 week pregnant and getting constant attacks for the last 3 weeks.

Hello, I was diagnosed at age 5 and have been taking colchicine since then. My brother has it as well.

After 2 years trying to conceive thank G-D we got pregnant thru IVF.

The first four months of my pregnancy I was fine but 3 weeks ago I started getting severe attacks. I take 2.0 mg of Colchicine but it doesn't help with my attacks. My attacks persist for 3 days starting at my abdomen then moving to the side and it ends at my shoulders. After this I'm fine for 2 days and then it all stars again.

I'm desperate and afraid something is going to happen to my baby. All ultrasounds I've done show that my baby is healthy THANK G-D. I live in Miami, Florida and don't know of any doctors here that know anything about FMF.

All the help I can get is very much appreciated.

I don't know that I can help but just know I said a prayer for you and your little one. I have lupus and they worked hard to get my kids as far along as possible. They can also give Lung boosting shots. Get them.