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  robpleticha | Colchicine | about 1 month ago | Originally written in English Article on Colchicine in the US

  Hi,

  Normally, this would be posted in the Community News section of links, but I thought I would mention it here.

  This article summarized the situation of FMF patients in the US who now only have one FDA approved brand of colchicine called Colcrys. What the article is missing is a mention of the effect of only having access to one type of Colchine on FMF patients.

  From Slate Magazine, read it here:
  www.slate.com/id/2289616/
• 
  robpleticha | 2 months ago | Originally written in English New Website for Searching for Clinical Trials

  The EU Clinical Trials Register (www.clinicaltrialsregister.eu) was launched yesterday by the European Medicines Agency. The online register gives for the first time public access to information on interventional clinical trials for medicines authorised in the 27 EU Member States and Iceland, Liechtenstein and Norway. The database also allows the public to search for information on clinical trials authorised to be carried out outside the EU if these trials are part of a paediatric investigation plan.
• 
  Donna | Colchicine | 3 months ago | Originally written in English Hi, I'm new

  I was diagnosed with FMF in 1982 and gene tested in 2004 as Heterozygous M694V. Both my sisters have the disease. We are all taking .6 mg colchicine.
  I also had my daughter tested. Her results were the same as mine. The information on the genetic testing said she could be a carrier. She does not have the same symptoms I had however does have episodes of vomiting, pains in lower belly area, but does not stop her from her daily activities.
  That being said I wonder if she is a carrier with possible symptoms, can she be affected with amylodosis in the future as she is not taking colchicine.
  Can anyone out there offer some guidance?
  3 replies to the topic — see all replies

  • 
    NancyS 3 months ago | Originally written in English

    Hi Donna,
    I hope others will answer you here. I have sent you a private message.
    Nancy
  • 
    toyre 3 months ago | Originally written in English

    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.
  • 
    Joelle 2 months ago | Originally written in English

    Hi Donna,

    Welcome to the fourm.
    I'm not really clear about your genetic diagnosis or your daughter's .....but I hope this information will help.

    A Homozygote carries two copies of the MEFV gene mutation, they have the disease. A Heterozygote carries only one copy of the MEFV gene mutation, they are unaffected by the disease.
    A Compound Heterozygotes carries two different copies of the MEFV gene mutations, they have the disease.
    ---------
    from fmfmontreal.org
    www.fmfmontreal.org/whatisfmf.htm

    How is it inherited?
    An individual inherits two copies of every gene from their parents (one from their mother and one from their father). Genes provide the instructions for the development and function of the body.FMF is believed to be caused by a mutation in the gene that is responsible for the production of a protein that regulates the body’s temperature and inflammation.Inheriting one mutated copy of the gene from one parent, and one normal copy of the gene from the other parent, makes a person a “carrier”. Being a carrier of FMF is not known to cause health problems. In order to have FMF, a child must inherit two copies of the mutated gene (one from each parent). When two parents are carriers, they each have a 50% chance of passing on their mutated gene to their child. With each pregnancy, this couple has a 25% chance of having a child who is unaffected by FMF (is not a carrier of the mutated copy of the gene); a 50% chance of having a child who is a carrier of FMF; and a 25% chance of having a child who is affected with FMF.
    
    -----------------

    To address your other question:
    The type of FMF attack can vary from one episode to the next. Symptoms and severity of attacks vary among FMF affected individuals, and can vary even among affected members of the same family.

    -------------------
    To address your questions about appropriate colchicine dosage:
    See Gene Reviews, NCBI Bookshelf, article on FMF by Dr. M. Shohat
    www.ncbi.nlm.nih.gov/books/NBK1227/

    Prevention of primary manifestations: lifelong treatment of homozygotes for the p.Met694Val mutation or compound heterozygotes for p.Met694Val and another disease-causing allele with colchicine (1-2 mg/day orally in adults and 0.5-1 mg/day in children according to age and weight). Colchicine prevents the inflammatory attacks and the deposition of amyloid. Individuals who do not have the p.Met694Val mutation and who are only mildly affected (those with infrequent inflammatory attacks) should either be treated with colchicine or monitored every six months for the presence of proteinuria. Surveillance: annual physical examination and urine spot test for protein for those treated with colchicine.

    -----------

    You should speak to your treating physician to discuss any changes in your colchicine regiment and to discuss your daughter's situation.

    All the best,
    Joelle
• 
  emccabe | 3 months ago | Originally written in English Colcrys/Colchicine

  Hi,

  I am new to this community. I was officially diagnosed with FMF about one year ago, but have been taking colchicine for the symptoms since 2009. As a young person with unreliable health insurance, I'm very worried about the new change from generic ("unapproved", as they claim) colchicine to brand-name Colcrys. Is there any action being taken to protest the price gouging? Five dollars a pill for something that's been on the market forever, since now it's "approved" and renamed? Seems ridiculous to me.
  I'd like to write more to introduce myself but that will have to wait until another time.
  One reply to the topic — see all replies

  • 
    NancyS 3 months ago | Originally written in English

    Hi I'm Nancy and yes this problem w/ Colcrys in the USA is in my opinion price gouging!!

    Many of us have tried writing to various and sundry agencies, government services, congressmen and women, Oprah, Dr Phil and others to no avail.

    I buy my colchicine out of Canada. It costs me about $100.00 for a 3 month supply including shipping.

    See my url for more on the problem and my story, just keep scrolling down the blog page....

    familialmediterraneanfever.blogspot.com/

    You may write to me at
    [email protected]

    And there is an FMF support group also at:
    FMF Support mailing list:
    [email protected]

    Let me know if I can help further.

    Nancy

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