question about drugs – please read it!

[VIOLA]

I have some question:
I talked about Exjade with agent of Novartis in Poland and he said that Exjade has been approve for FDA (3.11.05) and has been approve for marketing in US (it was registered on 7.12.05). I try to find out some more in formations about possibility of import this drug to Poland, but another person from pharmaceutical wholesalers said that it is impossible, because Exjade is not yet approved for marketing in US. I don’t understand it! We asked my Dad’s doctor did he help us to import Exjade, but he said that this drug will be very expensive and our hospital will not give one’s asset to it. My Dad receives Desferal next each transfusion, but in our hospital there is not Desferal pump and Dad receives Desferal in injection. Dad’s doctor said us that injection is not work.
In my country everything is so difficult! There is no money for treatment people above 50 years old.
Another question is: my Dad has been on Thalidomide since 2 month, He is still transfusion dependent. He has side effect, unfortunately. What are You think, is this still any chance for improvement in RBC and HB? There is no improvement until now and WBC are low – Dad has 2 infection with high fever. We don’t know what to do? A next visit with my Dad’s doctor will be in march 2006, can You imagine? I want also ask You about Revlimid –do You know will this drug be very expensive?
Thank You for all answers. It is help me.I’m on this forum very often, but I write hardly ever, because my English, as You see, is not very good. I’m sorry and best wishes to all of You! Viola

[sugarwhale]

Dear Viola,
Your English is so much better than my…Polish! I understood every word! I’m not sure I’m much help, but I’ll tell you what I know. I believe Exjade is now available in the U.S., having received FDA approval. My mom’s doctor can readily get it for my mom. I don’t know how expensive it is. I DO know that it’s available.
My mom was on Thalidomide for a short time. It worked for a while, then stopped working. Yes, Viola, she DID have some nasty side effects. I do know that it takes a while for Thalidomide to work (if it’s going to!). Two months may not be quite enough time.
All of us on this Forum are anxiously awaiting the approval of Revlimid. Revlimid helps a much greater number of people than the other available drugs. The drug itself is NOT expensive. However, my understanding is that it WILL be expensive to the consumer. I hope I’m wrong. Revlimid is initially only to be used in limited conditions. From your letter, I don’t know what kind of MDS your dad has, whether chromosomes are involved, etc. That would make a difference.
I can tell you that if Revlimid doesn’t come out soon, my mom will die. I wonder that they cannot do anything QUICKLY. From what I read the only remaining problems are with distribution.
Viola, there’s not a thing wrong with your English! Write back often. All of us are here to help.
~~~ Janet

[VIOLA]

Oh Janet! Thank You very, very much! My Dad has MDS RA with 5q. He was diagnosed in 2003 year. Revlimid is the last resort for Him.I’m praying for making this drug available for Him and all the people on this forum , who must fight with this horrible disease!!! ThaNK You and best wishes for Your Mum! Viola

[sugarwhale]

Dear Viola,
I just found out FOR SURE that Exjade is available in the U.S. and in Switzerland. It HAS been approved. I’m glad to help you. Like you, I am hoping that Revlimid will soon become available. The FDA has set an approval date (or disapproval!) for January 7. There are so many, many people who could be helped with it. I am angry that they are just sitting on it! I realize fully that they have to assure Revlimid is safe before approving it. However, we’re not dealing with acne here! We’re dealing with people who are…dying. Your dad…my mom…and tens of thousands of others. Good luck to you and your Dad, Viola. Keep track of this Forum. The people here will help.
Happy Holidays, too!
~~~ Janet

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