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  Anna | Colchicine | published 25 days ago | Originally written in English Alopecia areata and colchicine

  Dear friends, I would like to know if someone of you, is having alopecia areata problems (NOT simple alopecia/hair loss), caused by colchicine treatment.
  I need to know for an italian patient with FMF. He is not having improvements with the common treatments for alopecia areata. He has asked informations to the Italian FMF group, but any other member has the same problem.
  I am looking for any feedback, to see if there is a connection with colchicine.
  Thanks for what you'll be able to tell me. Greetings from Italy -Anna-
  3 replies to the topic — see all replies

  • 
    toyre published 25 days ago | Originally written in English

    Hi Anna,
    I found this in the literature:
    Effluvium drug;
    1. Telogen Effluvium: Hair Loss abundant occurring a few months after taking the drug
    a. Immunosuppressive and anti osteoarthritis: azathioprine, colchicine, auranofin, methotrexate, penicillamine
    Telogen effluvium may indicate the support of a deficiency (iron, vitamin B12) or a thyroid problem but they often heal without treatment after 3 to 4 months (after pregnancy, fever, surgery ...). Telogen effluvium induced by the one taking medication (isotretinoin, cholesterol, anticoagulant ...) require whenever possible replacement therapy with another molecule.
  • 
    toyre published 25 days ago | Originally written in English

    INFORMATION: Odan Laboratories Ltd. of Colchicine.
    Most side effects listed below do not happen very often, but they could lead to serious problems if you do not receive medical care.
    • hair loss;
    • a decrease in sperm production;
    • muscle soreness;
    • frequent infections (eg. Of colds might reveal a decline in white blood cells);
    • reduced production of urine;
    • blood in urine;
    • tingling, tingling, or numbness in the arms or legs;
    • signs of liver problems (eg. Nausea, vomiting, diarrhea, loss of appetite, weight loss, yellowing of the skin or whites of the eyes, dark urine, pale stools );
    • signs of bleeding (eg. A nosebleed, blood in urine, coughing blood, cuts that will not stop bleeding).
  • 
    Anna published 22 days ago | Originally written in English

    Hi toyre. I've found the same article one day after :-)
• 
  melirubin | published about 1 month ago | Originally written in Spanish fmf patient from Argentina

  Hello, my name is Melisa I'm 18 years old and I'm from Argentina. I was diagnosed FMF a year ago. Here in Argentina there is no doctor treating this desease. I sent the studies to Germany and there I was diagnosed the illness. Do you know any doctor in Argentina or any cuontry that I could contact?
  I don't have much information about the desease and I don't live in Buenos Aires and in my city this desease is not known.
  Thank you

  Notice: This text content has been translated automatically by a third-party service.

  One reply to the topic — see all replies

  • 
    toyre published about 1 month ago | Originally written in Spanish

    Hola Melisa,
    Le sugiero que se acerque a la siguiente página
    El AFFMF española
    Lea la versión en español de la AFFMF sitio fácilmente?
    www.microsofttranslator.com/bv.aspx?from=&...
    Y los foros
    ar.groups.yahoo.com/group/fmfargentina/
    es.groups.yahoo.com/group/fiebre_mediterra...
    buena lectura
    Jean-Pierre toyre
    moderador de la comunidad francesa de las enfermedades raras: Fiebre mediterránea familiar
• 
  Irisassayag | Finding a doctor, Pregnancy, Patient Advocacy | published 2 months ago | Originally written in English Pregnancy with FMF

  Hi my name is iris and I was born in Israel,I live in NY for the past 10 years and I have fmf since I born due to the family history. I am currently 5 months pregnant with my first baby. All the years here in America my fmf was stable and control since I got pregnant my fmf condition become worse with non stop attack.
  I will be happy to get any advise and if any body know a doctor in NY area that knows how to handle with fmf. Any doctor that I want to don't know fmf or afraid to accept me as a patient. And the only 2 doctor that I found that they familiar with fmf don't accept insurance or Medicaid only private which I can't afford it.
  5 replies to the topic — see all replies

  • 
    Irisassayag published 2 months ago | Originally written in English

    And yes to my knowledge also woman that are pregnant suffer less from attacks,that's way I am so helpless and frustrated.
  • 
    NancyS published 2 months ago | Originally written in English

    Iris,
    the NIH can take pregnant women but you are required to go there for complete tests and exams. I went some years back and spent two days. They drew 14 vials of blood from me and gave me a turkey sandwich and orange juice :-) Everything is free there but you do have to pay to get there and stay overnight. They may think with your problems now and the length of pregnancy that this would be too hard on you and the baby.
    Will look for you on the yahoo group. Please ask any questions there. There are other moms who may be able to help.
    Nancy
  • 
    robpleticha published about 1 month ago | Originally written in English

    New literature review published on pregnancy and colchicine use:
    www.ncbi.nlm.nih.gov/pubmed/22436523?dopt=...

    This abstract is for information purposes only and any treatment decisions should be made with your doctor.
• 
  robpleticha | published 2 months ago | Originally written in English FMF Meeting in Israel

  The AFFMF (French FMF Association) is organizing a meeting in Israel this May with some of the top FMF experts in the world.

  Check out their plans here:
  bit.ly/GLHwvc
  bit.ly/GPd01Z
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  toyre | Diagnosis, Finding a doctor, Colchicine, Managing attacks, Diet, Pregnancy, Research, School, Children, Patient Advocacy, Genetics | published 2 months ago | Originally written in English Evolution of AFFMF

  In response to numerous requests, the AFFMF (French Association of Familial Mediterranean Fever) has developed on its website pages in English,
  "The AFFMF in English": affmf.jimdo.com/accueil/the-affmf-in-english/
  "US News": affmf.jimdo.com/accueil/the-affmf-in-engli...
  to offer you if you have problems with drugs (colchicine ...), medical questions, one needs to find a doctor in the United States, contact us by email in confidence.
  In parallel, the AFFMF publishes a set of documents in English are available for download.
  The team AFFMF

  AFFMF - 20 rue de Madrid 75008 Paris
  phone: 01 48 74 41 71
  email: affmf@orange.fr
  Site: affmf.jimdo.com/

  Pour répondre à de nombreuses demandes, l’AFFMF (French Association of Familial Mediterranean Fever) a développé sur son site des pages en anglais,
  « The AFFMF in English »: affmf.jimdo.com/accueil/the-affmf-in-english/
  « US News » : affmf.jimdo.com/accueil/the-affmf-in-engli...
  qui vous permettent si vous avez des problèmes de médicaments (colchicine…), des interrogations médicales, un besoin de trouver un médecin aux USA, de nous contacter par messagerie en toute confidentialité.
  En parallèle, l’AFFMF édite un ensemble de documents en anglais qui sont à votre disposition par téléchargement.
  L’équipe AFFMF

  AFFMF - 20 rue de Madrid 75008 Paris
  phone: 01 48 74 41 71
  email: affmf@orange.fr
  site : affmf.jimdo.com/
• 
  engyawni | published 3 months ago | Originally written in English A doctor in Montreal

  I need your help, I am planning to immigrate to Montreal this summer and I have two children (24 and 18) diagnosed with FMF. I need an address of doctor or clinic or hospital that my children can follow regularly with them specially when my doctor, here in Cairo, told me that my son might need to increase the dose of colchicine if he couldn’t adjust well with the cold Winter of Montreal.

  Appreciate if you can give me your advice.
  10 replies to the topic — see all replies

  • 
    kelticqueen published 3 months ago | Originally written in English

    Hello Engy:

    Here is the name of a specialist in Montreal I received from the AFFMF:

    From:
    "Déborah Boujenah" <affmf@orange.fr>
    View contact details
    To:
    "'kat murphy'" <chickwithmakeup@yahoo.com>

    Hello,

    We are in Paris but I give you the address and phone number of a specialist in Canada.

    By hoping that this doctor can bring you all the help which you need.

    Very cordially.

    I remain at your disposal.
    

    
    

    
    

    
    

    
    

    
    

    
    

    
    

    
    

    
    

    
    

    DR SLIM Rima

    - GENETICS - Molecular Biology

    rima.slim@muhc.mcgill.ca

    514 934 1934 ext 445

    Human Genetics & Obstetrics Gynecology

    McGill University Healthy Centre

    1650 Cedar avenue, L12-132

    Montreal

    H3G 1A4

    CANADA

    Déborah Boujenah

    Bureau de l'AFFMF

    20 Rue de Madrid

    75008 Paris

    Tel : 01 48 74 41 71

    www.affmf.org

    Hope it helps U:))

    Kat
  • 
    engyawni published 3 months ago | Originally written in English

    Thanks a lot, this help for sure as I didn't get much info so far.
  • 
    kelticqueen published 3 months ago | Originally written in English

    You are welcome! I did post this on the Yahoo Support group but long after you had asked the question so I guess you did not see it. I am wondering where in Canada this Dr. Hady Gobran is living?? I guess not in Montreal??

    I emailed Dr. Slim for my own FMF diagnosis but did not receive an answer. It seems he is an OB-GYN specialist so I am not sure if he will be much help. I do have an appointment in Montreal at the Montreal General Hospital Human Genetics Division to be genetically tested for FMF in April. Perhaps they can help U? Would you like the contact info them or probably you already have it??
    thx
    Kat
• 
  robpleticha | Colchicine | published 10 months ago | Originally written in English Colchicine Access in the USA

  Are you a United States FMF patient having trouble with accessing a suitable brand of Colchicine? We would like to hear from you, please message me here or at robert.pleticha@eurordis.org
  13 replies to the topic — see all replies

  • 
    tlang published 3 months ago | Originally written in French

    Hi. I am the mother of 2 children with FMF. Our son was diagnosed at 7 yrs old, and prescribed Colchicine along with Phenobarbitol (to control the side effects of Colchicine). The doctor started him on a dosage of .6 mg and to increase at intervals. We noticed that when he began the medication he began to urinate more frequently right away. We were told that he would have bladder spasms due to the medication and that the Phenobarb would control these effects. When his dosage of Colchicine went up to .9mg, he became incontinent. I was told by the doctor and manufacturer that Colchicine has never caused this to happen before or at least its never been reported in (child) patients before. It's been over a year since he began treatment for FMF. And he is still taking medication for FMF (Colcrys 1.2 mg) and Oxybutnin 10mg ER for the incontinence and side effects of Colchicine. My question is, has anyone else experienced this kind of side effect of the drug? And our son's Urologist isn't sure what to expect since he's never treated a child with FMF. Will the incontinence resolve as he gets older, or adjusts to the medication? Any info is appreciated. Thank you.
    Tauna
  • 
    jazito published 3 months ago | Originally written in English

    Colcyrs is not working for me. I am tired, achy and just plain miserable. Did not have these symtoms with Colchicine. Would like to hear some success stories on the sourcing of Colchicine from outside the US.
  • 
    tlang published 3 months ago | Originally written in English

    Please join the FMF support group at fmf_support@yahoogroups.com!