Communauté Fièvre Méditerranéenne Familiale

Discutez ensemble avec d'autres malades touchés par Fièvre Méditerranéenne Familiale, leurs familles ou dites-nous juste ce que vous avez sur le cœur.

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karend
modérateur

How to use the Comparative Chart of Systemic Autoinflammatory Diseases

Our Comparative Chart of Systemic Autoinflammatory Diseases (SAID) has become a leading tool for doctors and other medical professionals worldwide. Did you know that you can search content on the chart with a simple keyword search bar when you click "command-f" on your keyboard? Want more tips? Take a look at this blog post that will help you to best access and utilize this chart if you are a doctor, or a patient seeking more information on these diseases. You can download a copy from our website (the link is in this blog post), but take a look at this article first. http://saidsupport.org/how-to-use-the-comp...

If you need a printed copy, there are instructions in this blog post, but you can also email us at karen@autoinflammatory.org to request a copy to be mailed to you. Doctors and patients are thanking us all the time for this resource, and we are working on developing a more interactive, multilingual, easier to search version that we hope to launch by early next year. We are so thankful for grants from Novartis and Sobi that have helped this chart to be available in print, and online to increase awareness for these diseases worldwide, in addition to the support from many in our patient community. Thank you!

Thank you Karen for this resource. I am one of the people from the patient community who regularly uses the chart (an refer other people to it) and appreciates the effort you put into developing it - well worthwhile.

Janine Jagger

martacampabadal
modérateur

Comunicado de la Asociación Española de FMF sobre la disponibilidad de Colchicina

Este comunicado lo he copiado de la página de Facebook de la Asociación Española de FMF

"Hola a todos,

Nos comunican que, debido a un problema con la distribuidora del medicamento, la Agencia Española del Medicamento ha inmovilizado todos los lotes de COLCHIMAX y COLCHICINE HOUDE que existen en el Laboratorio que los fabrica. Esto ha provocado que, desde hace 2 semanas, en todos los almacenes de farmacia de España se haya agotado el medicamento. Desde dicho laboratorio me han informado que, conocen nuestra problemática y están tratando de solucionarlo cuanto antes pero que no pueden dar una fecha concreta. Al parecer están esperando a conseguir una máquina que necesitan pero que no acaba de llegar.

En una farmacia me han dado la solución temporal de pedirle al médico de cabecera una receta para que, en la propia farmacia, nos fabriquen una fórmula magistral pero que saldrá más caro.

Os aconsejo que, si no tenéis el medicamento en casa, salgáis a comprarlo cuanto antes donde todavía quede. En cuanto sepa algo más os lo diré.

Os mantendré informados.
Un saludo.
FMF ESPAÑA"

martacampabadal
modérateur

Parece que ya hay novedades sobre el tema de la disponibilidad de Colchicina en España.

Aquí va el comunicado:

"Acabamos de hablar con los laboratorios SEID. Han dicho que a partir de la semana próxima podremos encontrar, sin problemas, COLCHICINA SEID (lo que antes era COLCHICINE HOUDE) en cualquier farmacia.

Respecto al tema del COLCHIMAX de momento no hay fecha para sacarlo a la venta de nuevo ya que les falta una máquina micronizadora. La que tienen les da para COLCHICINA SEID pero para COLCHIMAX necesitan una más grande.
Han asegurado que no van a dejar de fabricarlo y que esto es sólo temporal.
A ver si todo se soluciona cuanto antes.
Un saludo.
FMF ESPAÑA"

FMFSPAIN
modérateur

Hola a todos,

En la página web de la Agencia Española del Medicamento se informa del problema actual de desabastecimiento de COLCHIMAX y COLCHICINA SEID y se da una fecha prevista para el fin del problema. Esta fecha es el 11 de abril del presente año, en el caso de la COLCHICINA SEID y del 16 de abril del presente año, en el caso del COLCHIMAX.

http://www.aemps.gob.es/cima/fichasTecnica...

http://www.aemps.gob.es/cima/fichasTecnica...

http://www.aemps.gob.es/cima/especialidad....

Esperemos que sea así.
Un saludo.

FMF ESPAÑA

robpleticha
modérateur

Research and Information About FMF Patients with Only One Mutation

This new blog from the Autoinflammatory Alliance contains links to Familial Mediterranean Fever (FMF) studies regarding symptomatic patients who only have one mutation found for FMF.

http://saidsupport.org/research-informatio...

Alguien embarzada con FMF

Hola tengo 26 años y tengo FMF, tomo colchicina desde el 2011 y no me han dado ninguna crisis mas.Quiero quedarme embarazada pero mi especialista me dice que es peligroso, por un lado si siguiera tomando la colchicina es toxico para el feto y por otro si la dejo, tendria el riesgo de darme crisis y esto perjudicar al feto y que venga mal el niño.Por favor necesito ayuda si alguien a pasado por esto, le agradeciria quebme xobtara su experiencia

martacampabadal
modérateur

Bonjour mrodriguez26,

Bienvenue à la communauté RareConnect. Les sujets concernant le FMF et la grossesse est un thème récurrent de cette communauté. Il y a plusieurs conversations sur ce thème datant de quelques mois.

D'après ce que j'ai lu, la majorité des personnes atteintes par le FMF arrêtent la prise la colchicine une fois qu'elles apprennent leur grossesse.

Je t'envoies ces liens qui pourraient t'être utiles.
https://www.rareconnect.org/es/community/f...

https://www.rareconnect.org/es/community/f...

https://www.rareconnect.org/en/community/f...

https://www.rareconnect.org/es/community/f...

https://www.rareconnect.org/es/community/f...

D'où viens-tu? Tu peux demander une deuxième opinion si tu le souhaites. Ce document liste les médecins spécialistes du FMF en Espagne et en Amérique latine
https://www.rareconnect.org/es/community/f...

Salutations,
Marta

Bonjour
J ai eu deux grossesses en prenant la colchicine
Il faut éviter l allaitement du bébé car cela peut lui donner des diarrhées.....
Et si tu veux vraiment le mieux c est de prendre la colchicine le soir et de ne pas allaiter tout de suite.....

Bonjour, j'ai aussi FMF et j'ai une superbe fille en bonne santé qui a 5 ans aujourd'hui.
Pendant la grossesse, mon docteur, un spécialiste de FMF, m'a fait prendre de la colchicine régulièrement, 1 cachet par jour.

colchicine resistance and amyloidosis

I have a question for everyone. How is colchicine resistance defined? I believe my 8 year old daughter Sama (diagnosed hetero for M680 and homo for M694) may be colchicine resistant.

Despite taking 1.5mg daily, she continues to experience a crisis on average every 3-6 weeks. Is the colchicine still functioning in terms of preventing amyloidosis? If not, should she be on Anakinra or another alternative and what are there side effects?

Does amyloidosis take place during FMF crisis only, or always? Does reduction in frequency of FMF crisis mean that formation of amyloidosis is also being reduced?

martacampabadal
modérateur

Long-Term Efficacy of Canakinumab in Childhood Colchicine Resistant FMF

For the colchicine-resistant FMF patients. (who have tried different brands of colchicine, etc and still have not had their disease controlled.)

This study demonstrated the longterm therapeutic effect of canakinumab in pediatric patients with CR-FMF: http://onlinelibrary.wiley.com/doi/10.1002...

Colchicine for Familial Mediterranean Fever: The Stephen E. Goldfinger Story

Some FMF patients have expressed their interest in honoring Dr. Stephen Goldfinger, who is credited with the first documentation of colchicine as an effective treatment for FMF, on his 79th birthday which will take place during the first week of March 2014. We would like to offer all FMF patients the opportunity to join this event. Attached is the story of the discovery of colchicine in the treatment of FMF, and the first publication that clinched it's role in becoming the standard treatment in 1972. We are sending personal messages to Dr. Goldfinger at an e-mail address that we have created for this occassion. On his birthday Dr. Goldfinger will receive the password to this address where he will find a treasure-trove of thoughts and stories from FMF patients who wish to tell him what his discovery has meant to them.

Read: Colchicine for Familial Mediterranean Fever: The Stephen E. Goldfinger Story
https://www.rareconnect.org/uploads/docume...

Dr. Goldfinger lives in Boston where there are few FMF patients. His first observations were on just 5 patients and even today, Dr. Goldfinger treats a handful of FMF patients in his medical practice. But there are thousands of FMF patients he has never met around the world and in other locations in the US who have been granted a healthy and pain-free life because of his observations and his determination to bring this into medical practice. There was no major research program behind this - it was just a doctor who made an observation that he believed was important. If you wish to express your thoughts to Dr. Goldfinger on his birthday then please leave a message before February 28, 2014 at the following address (you can write this in your own language and feel free to send pictures if you wish) : thankudrgolgfinger@gmail.com

Hi Janine,

I recently joined Rareconnect and noticed what a great resource you are for the members. I wanted to seek your support and advice concerning my daughter, Sama (whom will be eight this April). Sama was diagnosed with FMF when she was 2 (with a diagnosis of heterozygous for mutation M680I +/- and homozygous for M694I +/+). She is on colchicine, and her attacks continue to range between 3-6 weeks in frequency (with occasional attacks two weeks between another) and lasting a day or two. The pain is usually isolated in her abdominal region, but sometimes it is accompanied with a headache or chest pain, and usually with a slight fever. Occasionally the pain is so unbearable that I have to carry her to the bathroom. Her doctor recently suggested that we increase her dose of colchicine from 1mg to 1.5 mg (3 pills) daily. Between attacks, she is a happy, health, and exceptionally bright girl.

If I may, I would like to ask you the following questions;

•Does her frequency of attack (despite being on colchicine) mean Sama is colchicine resistant? If so, is the colchicine still doing its function in terms of the health of her organs?

•We live in the Palestinian Territory, and thus rely on the colchicine coming in from Israel. You mentioned to someone that it is possible to get better symptom control with another brand of colchicine. Is there any particular brand you recommend we have our doctor order? Also, is ordering through idispharma.com a straight forward process, or do you have any advice on how we can assist our physician in this regard?

•Zara from Rome mentioned that she takes an extra colchicine at the onset of an attack to mitigate it, and if that doesn’t work she takes an anti-inflammatory as deflamat or voltaren? What are your thoughts on introducing anti-inflammatories, in general, and these medications, in particular? Would they be doing more harm than good?

•Also, another member (Yara) mentioned two other medications, anakinra, and canukinumab? Do you know as to their function, pros/cons, or if they are taken in place of colchicine or along with it?

•Lastly, you mentioned dietary changes (i.e. going Gluten and/or dairy free) which may work in managing the frequency of attacks. Honestly, this gives me a sort of silver lining to this whole ordeal. I mentioned to Sama that you have been 1 ½ year attack free, and she was very happy for you and was excited to one day try herself. In the territory we live in (the West Bank), Gluten free products are not so readily available nor are soy products (beyond soy milk), unless consistently purchased in Israel (which is not so easily accessible to us). This can be managed if we chose to commit to this diet. However, my husband has concerns about limiting Sama’s childhood. She was lactose intolerant as a baby (until she was about 2), so she hasn’t really acquired a fondness for dairy products anyway. Is merely cutting back (for instance, consuming 0% milk, Turkish yogurt, flat breads, etc.) helpful? Any advice in this regard would be great.

I know I bombarded you with an absurd amount of questions, but you know how someone can be concerning the welfare of a loved one. I would love any advice on how to start taking the needed steps in getting Sama living a nearly FMF-free life.

I look forward to learning from you.

May thanks,

Mai Farsakh