Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Nabuva on November 23, 2007, 03:21:19 PM
-
Hello
I search where to order deferiprone or kelfer, I don't have thalassemia but friedreich's ataxia and it seems the deferiprone be good for heal this but it always inn try and i was in wheelchair since five year i not would wait more.
if you have a site where i can order this without medic opinion, thank you very much.
PS: sorry for my enjglish but im french
-
Hello Nabuva, :urwelcome
I don't know if defriprone is available or even permitted in France,the manufacturers are apotex group of companies. Visit their site www.apotex.com ,contact them and they'll guide you if it's available in your country,(in France or any other country you are currently residing in.)
And please tell us more about your disesase.
Have a good day.
ZAINI.
-
hello
In france, the deferiprone is authorized for thalassemia but it's not authorized for friedreich's ataxia. I can't wait an autorisation. Perhaps i can order it in an other country by post office.
-
Hi and welcome to the group,
While looking for something else I came across this which may be of interest to you. This study is being conducted by ApoPharma (Apotex) and there will be a trial in France.
A Study Investigating the Safety and Tolerability of Deferiprone in Patients With Friedreich's Ataxia
http://clinicaltrials.gov/ct2/show/NCT00530127?intr=%22Chelating+Agents%22&rank=54
France
Hospital Necker-Enfants Malades Not yet recruiting
Paris, France, 75743
Contact: Arnold Munnich, M.D. munnich@necker.fr
They are not yet recruiting for the study but my suggestion would be to contact them now and if possible, get your name on the list.
-
I have already offer my candidature for a try as this but they want someone who can walk for measure progress and me im in a wheelchair my last candidature was rejected, I "preffer" an illegal way to get it, as pharmacy who proposed some tabs for sex or other but i cant find one who sell kelfer.
-
Hello Nabuva,
As you are so interested to get the medicament... I have here a box of ferriprox 500 mg.. unfortunately I can not take them, I tried but I was becoming sick, etc. So I have to continue with Desferal...
Do you have relatives here in Germany ? - I could send them the box... Not sure, if you will get it in case I send them directly it to France...
Just let me know... :huh
I dont know what help you are trying to find with an iron observer but if you are so convinced of it and you want to have the pills, I will send them to you....
Bye, Panos
-
yes but it's just one box and i don't think it's enough. I search a link for order it for long time
-
Well I wish you luck in trying to buy some deferiprone..Because I dont think that the drug companies like Norvartis or the other one will sell it to a patient without doctors consent!!!!
Well thats what I think..Plus here in australia its not recommended to use other peoples medications
-
Well I wish you luck in trying to buy some deferiprone..Because I dont think that the drug companies like Norvartis or the other one will sell it to a patient without doctors consent!!!!
Well thats what I think..Plus here in australia its not recommended to use other peoples medications
This is my first time responding. All of your questions and responses are so informative. I am "piggy backing" off the research and available meds for Thalassemia to research treatment for my son. My son has Hallervorden Spatz Disorder.... iron build up in the brain. This is a different neurological disorder from Freidich's Ataxia which also has iron build-up in the brain. I have a prescription for deferiprone from a neurologist in the USA. I have been using this to get mail order companies to mail the medication to me. The medication is very expensive but please persist if you can. I cannot believe you cannot find a compassionate doctor to cooperate with you. I have investigated Kelfer which is 1/5 of the price but there are too many restrictions on getting it from India. Doesn't France have some kind of "compassionate use " procedure? My son has been stable for 2 years and appears to be improving. I read the good, promising results from the study in France on FA. I know your message is months old but I feel for you and I know what it is like when the doctors say there is "no treatment".
-
Are you also using IP6 as a chelator? It is known that it works in the brain to remove iron and is the subject of research into treatment for Parkinson's disease because it does remove iron from the brain. IP6 is a member of the B vitamin family and is found in the bran of grain.
http://www.cdfin.iastate.edu/update/research/FY05/project5.htm
Based on the positive effect of iron chelators and antioxidants on PD and the antioxidant property and iron chelating ability of phytic acid, we hypothesize that phytic acid may protect against the neurodegeneration associated with PD.
Its ability to enter every cell in the body shows great potential as a chelation supplement.