I hope everybody has ahappy new year. I wondered if anyone knows why/how flunarizine was discovered to help in AHC and why the dose is much higher than that...
Hi, I've been reading the postings on Flunarizine. My daughter Brooke (Age 18) has been on Flunarizine since age 2. I believe it does what it is supposed...
Dana Tasi
dtasi@...
Jan 5, 2009 11:44 am
6902
Dana- Thank you for your post. How did you find out that Flunarizine will no longer be available? Vicky Platt ... From: afha@yahoogroups.com...
Mary is now 22 and she has also been on Flunarizine since age 2. We ordered the Apo-Flunarizine and she has been taking it since the end of October and she's...
Carol & Kevin
pruntys79@...
Jan 5, 2009 2:23 pm
6904
Hi Vicky, I did not save it but one parent posted something about their pharmacy only carrying the generic brand in an email. I then asked where people...
Dana Tasi
dtasi@...
Jan 5, 2009 2:34 pm
6905
Hi Carol, Thanks for your input. That is the generic brand that I also ordered from Mark's Pharmacy. It does look to me that we have no other alternative. ...
Dana Tasi
dtasi@...
Jan 5, 2009 2:35 pm
6906
Hi Dana, Our PAULINE ( now 6 years old) took Flunarizine for at least a year ( when she was 4 years old). She took the branded SIBELIUM and the Generic...
Brooke, my understanding after talking with the pharmacist at Marks Marine Pharmacy in Canada is that the company making Sibelium is no longer making it, but...
Everyone, Please read the below excerpt resourced from The Office of Generic Drugs, Center for Drug Evaluation and Research, U.S. Food and Drug Administration...
I have read contrary information as to generic drugs being IDENTICAL to branded. This link talks about the 'bioequivalence rules' for generics and the...
Alaina is taking (and has been for the last 1.5-2 years) the generic form of Flunarizine by APOTEX. She was using Sibelium previously, but, we were told at...
Interesting, Karen! That's true regarding the fact that the US guidelines may not apply. Honestly, from our experience, we did not see a difference with...
-I looked back on an old article about AHC written by Verret and Steele from 1971. They describe the disorder but do not mention treatment with flunarizine at...
I hope it goes smoothly too! ... From: Jennifer <jejeaja@...> Subject: Re: [ahc] Re: flunarizine To: afha@yahoogroups.com Date: Monday, January 5, 2009,...
Not sure when the first study was done re: Flunarazine, but there was this study done in 1993. I got this info from the AHC website. I don;t have the article...
Happy New Year! I spoke with the US office of Janssen and they will do nothing nor speak of drugs not FDA approved. They did directed me to their European...
Hello, Our daughter, who is now 27, was, I believe, involved in the research trials being done on Flunarizine. I don't remember exactly when that was, but I...
Don Kilpatrick
donkilpatrick@...
Jan 7, 2009 1:55 pm
6917
WE lve in England and at present are still getting sibelium from Janssen -cilag. I think the hospital gets it ona named patient basis from France, The...
I did located another article from 1987 which is titled- Flunarizine in Alternating Hemiplegia in Childhood. An International Study in 12 Children. P.Casaer...
One more thing about the article I just mentioned. It states that P.Casaer who was the study coordinator and another physician each had one patient who...
Thanks for answering. I am going to read the articles if I can find them. Really grateful to you taking part in a trial that has helped others with AHC. ItMy...
My daughter is now 17 and has been on flunarizine since starting it at 10 months old. She also has less severe attacks but the flunarizine has not reduced the...
I found a pharmacy that has sibelium.It's called 77 Canada Pharmacy.The number is 1-800-545-1106.Maybe we can all get together and write the manufacturer.It is...
Dominique Poncelin AFHA President (French Families Organisation for AHC) Dear Friends As far as Flunarizine is concerned, Janssen is still producing the drug...
Dominique PONCELIN
d.poncelin@...
Jan 9, 2009 9:53 pm
6924
I want to meet you. Give me a chance! Click here to chat with me online: http://goasdh.zoomshare.com/files/chat.htm...
Hi Everyone, Renee, mom to Lisa age 8. Lisa has been on Flunarazine since 20 months. For her it was like a miracle drug, stopping the paralysis in it's...
Hi, Renee! At our last neuro appt, Alaina's dr. suggested we try Diamox. He has another patient with AHC that is about 8 years old (like our girls) and he had...
Hello Domenique, I wonder if you have an address of pharmacy or contact at Janssen for those of us in US (or elsewhere) who want to continue ordering brand...
THE ARE GOING TO CONTINUE TO MAKE THE FLUNARIZINE.IT IS THE NAME BRAND SIBELIUM THATS IS NO LONGER BEING DISTRIBUTED TO MARKS MARINE PHARMACY.THATS IS WHAT...
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