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Colchicine side effects

Hello everyone,

I am 21 year old female living in the US but originally from Morocco. I recently submitted my DNA for analysis with 23andme to find out more about my ancestry. Today, I decided to run my data on a SNPedia (out of curiosity since I am genetics PhD student). I found out that I carry both mutant alleles of the MEFV gene, and I am also a carrier for another gene associated with FMF. I have had joint pains in my knees growing up which were dismissed by parents as "growing pains". When I was around 17 I started having severe abdominal pains which required hospitalizations every few months. Doctors in Morocco, US, and Switzerland were unable to diagnose what I had. I haven't had an attack since age 19. However, recently, I have been experiencing periodic headaches/fevers as well as a rash on my thighs. Although severe, I find I can easily manage the rash, and the fever does not last more than a few hours. The abdominal pain was the worst symptom but seems to have stopped happening. I would like to know what the colchicine side effects are? Is it worth taking it even if my symptoms are not currently very bad? I am also concerned with sub fertility; from what I have heard colchicine can help with the amyloid buildup and improve fertility. What have been your experiences with that? Thank you!

Attaques Sévère FMF

Bonjour,

J'ai 46 ans et je souffre de fièvre familiale méditerranéenne.

Mes symptômes inclus des douleurs abdominales, douleur pleurétique à la poitrine, endolori, articulations enflées, douleurs musculaires, vomissements, gonflements, péricardites, douleurs pelviennes et de l'arthrite.

Je prends de la Colchicine depuis mes 20 ans et ça fonctionne plutôt bien. Il y a quelques mois, j'ai commencé à avoir des symptômes listés ci-dessus, et ils ne sont pas modérés mais plutôt sévères.

Comme je suis couché avec les symptômes sévères, ma fille écrit cette histoire à cause des inflammations que j'ai dans mes poignets.

Quand je prends des médicaments non stéroïdes anti inflammatoire, ça me produit des ulcères et je dois malgré tout y faire face.

Est-ce que quelqu'un à des suggestions ou des remèdes qui pourraient m'aider? Est-ce qu'il y a une chose qui peut aider contre l'inflammation ou la douleur?

Aussi, est-ce que quelqu'un est en handicap à cause de cette maladie?

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

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....