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Dr. Bob is Robert Hsiung, MD,
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Posted by SLS on May 29, 2004, at 7:50:27
In reply to I TOLD PUBLIC CITIZEN ABOUT SERZONE NEFAZODONE, posted by Tony C. on May 28, 2004, at 14:04:21
Maybe you could post an e-mail address for us to write to. Wouldn't it be cool if there were 1000 lurkers for every 1 poster, and that they all would follow up by showering the manufacturer with letters?
- Scott
Posted by Dr. Bob on May 29, 2004, at 7:53:03
In reply to Re: I TOLD PUBLIC CITIZEN ABOUT SERZONE NEFAZODONE, posted by Tony C. on May 28, 2004, at 22:05:29
> I am sick of Public Citizen and Dr. W. acting like they represent everyone
>
> half the people signing their petitions if not most of them, are probably not even people that suffered depression and felt the relief from Serzone/Nefazodone.Others here may support Public Citizen and sign petitions. Please be careful not to jump to conclusions about them or to post anything that could lead them to feel accused or put down.
If any of you have any questions or comments about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ:
http://www.dr-bob.org/babble/faq.html#civil
or redirect a follow-up to Psycho-Babble Administration.
Thanks,
Bob
Posted by Tony C. on May 29, 2004, at 8:06:56
In reply to Re: please be civil » Tony C., posted by Dr. Bob on May 29, 2004, at 7:53:03
> > I am sick of Public Citizen and Dr. W. acting like they represent everyone
> >
> > half the people signing their petitions if not most of them, are probably not even people that suffered depression and felt the relief from Serzone/Nefazodone.
>
> Others here may support Public Citizen and sign petitions. Please be careful not to jump to conclusions about them or to post anything that could lead them to feel accused or put down.
>
> If any of you have any questions or comments about this or about posting policies in general, or are interested in alternative ways of expressing yourself, please see the FAQ:
>
> http://www.dr-bob.org/babble/faq.html#civil
>
> or redirect a follow-up to Psycho-Babble Administration.
>
> Thanks,
>
> BobOK BOB, I APOLOGIZE, IF I OFFENDED ANY BOARD MEMBERS, BUT PEOPLE NEED TO BE AWARE THEY DO NOT REPRESENT EVERYONE, AND I AM REALLY IN A PICKLE HERE. EVERYONE IS DECIDING THE FATE OF MY MEDICATION THAT WAS THE ONLY THING TO HELP ME OVER THE LAST 7 YEARS, AND HELP GIVE ME BACK THE WORNDERFUL FEELING TO FEEL AND ENJOY LIFE AGAIN, RATHER THAN LAY AROUND IN AN EMACIATED VEGATATIVE DEPRESSION. I FEEL PEOPLE LIKE MYSELF SHOULD NOT BE SUBJECT TO THIS NIGHTMARE OF PEOPLE FORCING US OFF OF A MEDICINE THAT WAS THE ONLY THING TO HELP US, I MEAN WHAT AM I TO DO ? I KNOW THE WITHDRAWAL IS HORRIFIC FOR ME, SO I GUESS I WILL BE OUT OF WORK, WHO KNOWS IF I WILL RELPASE, AND THEY SAY SWITCH ? SWITCH TO WHAT ? WHAT WAS AVAILABLE 7 YEARS AGO DID NOTHING FOR ME EXCEPT THE SERZONE/NEFAZODONE. I HAVE A RIGHT TO BE REALLY UPSET. I MEAN WHO IS THINKING OF ME, AND PEOPLE LIKE MYSELF ? I CAN"T BELIEVE SOMEONE CAN'T SPECIALLY ALWAYS MAKE THIS AVAILABLE FOR SOME INDIVIDUALS UNDER A DOCTORS RECCOMENDATION. MY DOCTOR DOES NOT LOOK THRILLED AT ALL FOR ME, SHOULD NEFAZODONE BE YANKED OR FORCED OFF THE MARKET. SOMEONE PLEASE THINK OF ME, AND OTHERS LIKE MYSELF. Maybe some Doctors should recoommend that this be available for "CERTAIN" Individuals that fully understand the liver risk, as it is the only thing that helped them.
Sincerely - Tony C.
Posted by Tony C. on May 29, 2004, at 8:13:29
I APOLOGIZE, IF I OFFENDED ANY BOARD MEMBERS, WHO MIGHT BE PUBLIC CITIZENS MEMBERS, BUT PEOPLE NEED TO BE AWARE THEY (PUBLIC CITIZENS) DO NOT REPRESENT EVERYONE, AND I AM REALLY IN A POTENTIALLY SEVERE PICKLE HERE. EVERYONE IS DECIDING THE FATE OF MY MEDICATION THAT WAS THE ONLY THING TO HELP ME OVER THE LAST 7 YEARS, AND HELP GIVE ME BACK THE WORNDERFUL FEELING TO FEEL AND ENJOY LIFE AGAIN, RATHER THAN LAY AROUND IN AN EMACIATED VEGATATIVE DEPRESSION. I FEEL PEOPLE LIKE MYSELF SHOULD NOT BE SUBJECT TO THIS NIGHTMARE OF PEOPLE FORCING US OFF OF A MEDICINE THAT WAS THE ONLY THING TO HELP US, I MEAN WHAT AM I/ WE TO DO ? I KNOW THE WITHDRAWAL IS HORRIFIC FOR ME, SO I GUESS I WILL BE OUT OF WORK, I MEAN SWITCHING IS NOT SOMETHING YOU DO OVERNIGHT, WHO KNOWS IF I WILL RELPASE, AND THEY SAY SWITCH ? SWITCH TO WHAT ? WHAT WAS AVAILABLE 7 YEARS AGO DID NOTHING FOR ME EXCEPT THE SERZONE/NEFAZODONE. WHY IS THIS HAPPENING ? I MEAN THIS IS UNBLEIEVABLE TO FIND SOMETHING HELP YOU, AND THE MAKER AND OTHERS LEAVE YOU COLD. I HAVE A RIGHT TO BE REALLY UPSET. I MEAN WHO IS THINKING OF ME, AND PEOPLE LIKE MYSELF ? I CAN"T BELIEVE SOMEONE CAN'T SPECIALLY ALWAYS MAKE THIS AVAILABLE FOR SOME INDIVIDUALS UNDER A DOCTORS RECCOMENDATION. MY DOCTOR DOES NOT LOOK THRILLED AT ALL FOR ME, SHOULD NEFAZODONE BE YANKED OR FORCED OFF THE MARKET. SOMEONE PLEASE THINK OF ME, AND OTHERS LIKE MYSELF. Maybe some Doctors should recoommend that this be available for "CERTAIN" Individuals that fully understand the liver risk, as it is the only thing that helped them.
Sincerely - Tony C.
Posted by HappyGirl on May 29, 2004, at 8:30:16
In reply to Re: I TOLD PUBLIC CITIZEN ABOUT SERZONE NEFAZODONE, posted by SLS on May 29, 2004, at 7:50:27
Hi:
>>> Maybe you could post an e-mail address for us to write to. Wouldn't it be cool if there were 1000 lurkers for every 1 poster, and that they all would follow up by showering the manufacturer with letters? <<<--- I totally agree with you, SLS on this 'GREAT' idea! However, T.C. may NOT like to post his personal 'e-mail' address, due to cause 'Spam' traffic. If possible, here, Psycho-Bubble, someone who has a talent to make 'Petition on Nefadozone,' we would be VERY grateful.
SLS, ... can you help us on this, 'Petition?' Or, do you know someone who can do that?Although I plan to write to the Public Citizen Group soon, I try to avoid any 'challenging' words or phrases as much as possible. Because, P.C. Group headed by Dr. W. seems to me 'pretty' powerful organization for anyone to challenge in the first place. Then, in my thinking after overnite's sleep, .... probably I'd rather ask them to understand my situation that requires med. combo. and one of them, Nefadozone is virtually 'Life-Save' since 1999. Without Nefadozone, I will NOT able to function enough to do any productive actitivies as a young person my age (I will tell my 'true' age along with my M.I. history, mailing address, e-mail and tele. #).
Hopefully, someone here will come to help us, ' Nefadozone takers' soon!!!
H.G.
Posted by Tony C. on May 29, 2004, at 8:39:19
In reply to Someone here, ...can help us on Nefadozone???, posted by HappyGirl on May 29, 2004, at 8:30:16
All I want Dr. W and Public Citizens to understand is that there should be an option for people like you and me and others who only responded to this medication, that it should be available to us. If Dr. W. Does not want new prescriptions that is fine, save a liver. BUT somehow we need to be kind, and let them understand our predicament, I feel for the Canadien Serzone users, I just wonder how many of them went through hell ? I mean they took Brand away, then the Country banned the Generic. Whoever may write public citizens voicing your concern, be kind and try to get them to understand where we are coming from. As I said, I do not want anyone to die of liver failure, ESPECIALLY new patients. But Depression is death, death of the mind and senses, and I would like the option to have available the Med that helped me.
Best of Luck !!!
Posted by SLS on May 29, 2004, at 8:58:18
In reply to Someone here, ...can help us on Nefadozone???, posted by HappyGirl on May 29, 2004, at 8:30:16
Actually, what I was thinking to do is to shower with letters Mylan Pharmaceuticals, the manufacturer of the generic nefazodone, petitioning them to continue making it. I haven't found an e-mail address, but they do post a consumer information phone number: 1-800-796-6526
They won't be available until Tuesday, I imagine. Let them know that there is plenty of profit to be had by providing nefazodone to the public.
- Scott
Posted by SLS on May 29, 2004, at 9:05:02
In reply to Re: Someone here, ...can help us on Nefadozone???, posted by SLS on May 29, 2004, at 8:58:18
This is all I could come up with:
Mylan Laboratories Inc
1500 Corporate Drive, Suite 400
Canonsburg, PA 15317
Phone: (724) 514-1800
Fax: (724) 514-1870
Email: investor_relations@mylan.com
Web Site: http://www.mylan.com
Posted by HappyGirl on May 29, 2004, at 9:09:05
In reply to Apolgy to otehr Board Members from SERZONE USER, posted by Tony C. on May 29, 2004, at 8:13:29
Hi Tony C.:
I truly understand your situation along with 'mine.' You do NOT need to apologize for some words you said about. All of us has a tendency to do when things getting into 'tough' situation.
Since Med. or med. combo. is ONLY 'Hope' for us to feel well and functionable, then I, too adamantly oppose those who try to 'ban' Nefadozone. However, P.C. group headed by Dr. W. seems to me quite powerful organiztion. Then, when writing to them on Nefadozone, I try to avoid any 'challenging' or 'offensive' words as much as possible. Rather, I ask them to understand my situation that requires daily med. regimen and one of meds. is Nefadozone which has been helping me prominently. Then, I want to stay on this, Nefadozone as long as possible, ... preferrably semi-permanently.I have no idea of what kind of response I will get or never get one, .... but I try to show some respect on their work, because they have been doing some 'good' job on different issues, ... but NOT on Nefadozone.
For instance, Mylan Lab. gave me tele. calls twice after asking 'NOT discontinuation.' Also, in the past, BMS sent me one-year's worth Serzone and plus some samples for my pdoc. and me. Then, some 'fond' memories I have for them, BMS. But, this is just my very 'personal' recollection.
H.G.
Posted by Tony C. on May 29, 2004, at 9:25:18
In reply to Mylan Pharmaceuticals Info - email, posted by SLS on May 29, 2004, at 9:05:02
PLEASE People, just be kind, and show your very concerned about what is best for you. I mean I know there is a better chance than not, should I be forced to get off this drug, it will disrupt my life, routine stabilzation etc. All I want for me/others that feel the same way is to have a right to continue to stay on it. Maybe you should call the FDA and voice your opinon I did. The guy told me that there was others that called voiving simialar concerns also. Now Public Citizen has tried to force the FDA to ban a drug called ARAVA which from what I read has a higher risk of liver toxicity than the Serzone, and it is my understanding the FDA voted unanimously 5-0 to allow that drug to still be on the market. Is there a way to get to suggest to the FDA they vote in favor of keeping Nefazodone at least a available for accustomed users ? Public Citizen is suing the FDA to force them to act on a 1 year old petition. Again, I understand the personal risks, I do not want liver failure, I do not want you to have it, I do not want a new person to ever get it. I just want the right to stay on it, with Liver Monitoring. As it was my only hope of available meds.
Best of Luck to all of us - Tony C.
Posted by Tony C. on May 29, 2004, at 9:33:01
In reply to Re: Apolgy to otehr Board Members from SERZONE USER, posted by HappyGirl on May 29, 2004, at 9:09:05
I am sure Public Citizens has done ALOT of good for people, and am glad people are out there that are concerned about harmful stuff, but I agree they are WAY OFF on this Serzone thing, at least for people who responded well to it, but I hope they sympathize with my situation. For me the Depression was a killer of mind and body, why risk returning to that when I found something to relieve it ? I wish they would just understand where I am coming from and others already on it.
Tony C.
Posted by SLS on May 29, 2004, at 11:38:03
Nefazodone / Serzone
To help keep nefazodone available to the huge number of people who rely on it to lead normal lives, it might be helpful to petition Mylan Pharmaceuticals to continue manufacturing it as a generic.
MILLIONS of people depend on nefazodone to lead normal lives. The risk of hepatic (liver) complications associated with its use is statistically very small. Nefazodone is far less hepatotoxic than Tylenol.
There should be enough financial incentive to make nefazodone available to the general public. $400 million in annual sales.
Mylan Laboratories Inc
1500 Corporate Drive, Suite 400
Canonsburg, PA 15317
Phone: (724) 514-1800
Fax: (724) 514-1870
Email: investor_relations@mylan.com
Web Site: http://www.mylan.com
Posted by Tony C. on May 29, 2004, at 12:35:56
In reply to NEFAZODONE - SERZONE: Email Mylan Pharmaceuticals, posted by SLS on May 29, 2004, at 11:38:03
I AGREE WITH YOU 100% BUT I THINK WE NEED TO CONCENTRATE ON CONVINCING THE FDA THAT WE NEED TO HAVE THE OPTION TO STILL TAKE IT, AFTER IT HELPED US. AGAIN FDA I AM A SERZONE USER 7 YEARS, ANFD BEG YOU TO THINK OF PEOPLE IN MY SHOES. NAFOZODONE SHOULD ALWAYS AT THE VERY LEAST BE AVAILABLE FOR SOMEONE WHO HAS BEEN DOING WELL SO LONG.
Perhaps a friendly call or email voicing our legitimate concern to the FDA about how this was our life saver, might help them rethink about banning a drug that has helped way more people than harmed them, when they review the petition from Public Citizens. I am not trying to cause trouble, I just want my rights to use the Med that works best for me the rest of my life If I need to. My heart goes out to anyone who died from this, 1 person is to many, but ibuprofen, acetaminophen, aspirin are all more deadly than Serzone/Nefazodone.
Tony C.
Posted by HappyGirl on May 29, 2004, at 13:13:30
In reply to Re: NEFAZODONE - SERZONE: Email Mylan Pharmaceuticals, posted by Tony C. on May 29, 2004, at 12:35:56
Hi:
To: Tony C.: One thing I need to tell you that Mylan Lab. told me over the phone that they had *no* plan to discontinue Nefadozone, although they didn't say how long Nefadozone would be available. Then, Tony C., .... you do not need to worry about its discontinuation, ... at least a year or so. Also, they told me about other 'Internal' matters concerning Nefadozone, ... but I hesitate to post the content of his conversation.If you're SO concerned about Nefadozone's future, I suggest you to e-mail or call them to find out by your own, as Scott L. suggesting. Otherwise, TOO much guesswork might end-up 'nightmare' that in turn causes 'anxiety.' Then, be cautious, ... because I had a similar experience in the past as yours, ... not med. issue but my 'hobby' issue over Internet.
BTW, ... Scott L. ... Thanks SO MUCH for your kind and warm-hearted encouragements for us, 'dedicated and loyal Nefadozone takers.' Your genuine intention to help us is truly appreciated. Any other informations or ideas you find here, Internet or elsewhere, please let us know.
Thanks again!!!
H.G.
Posted by Noa on May 29, 2004, at 16:19:52
In reply to Mylan Pharmaceuticals Info - email, posted by SLS on May 29, 2004, at 9:05:02
Thanks for the email address. I have just sent my letter to Mylan Labs, addressed to the board of directors.
Posted by Noa on May 29, 2004, at 16:26:53
In reply to Re: Mylan Pharmaceuticals Info - email » SLS, posted by Noa on May 29, 2004, at 16:19:52
Now I am going to work on my letter to Public Citizen.
The email for their health research group is: hrg1@citizen.org
or you can submit email through their web site:
http://www.citizen.org/contact/sendemail.cfm?Email=hrg1@citizen.org&Subject=(Insert%20Subject%20Here)
Posted by Noa on May 29, 2004, at 16:32:07
In reply to Re: NEFAZODONE - SERZONE: Email Mylan Pharmaceuticals, posted by HappyGirl on May 29, 2004, at 13:13:30
I just sent off my email to Mylan and am now working on one to Public Citizen.
To reach Public Citizen, the email for the health research group is:
or you can submit comments via their website:
http://www.citizen.org/contact/sendemail.cfm?Email=hrg1@citizen.org&Subject=(Insert%20Subject%20Here)
Tony, I will also draft something to send to the FDA.
Posted by Tony C. on May 29, 2004, at 16:46:30
In reply to Re: NEFAZODONE - SERZONE: Email Mylan Pharmaceuticals, posted by Noa on May 29, 2004, at 16:32:07
Thank you for telling them your concern, this is our right. I mean there has to be a way to keep us ALL happy. Meaning We should be able to stay on it, even if it is banned from being prescribed to new people. There should be a special program to keep OLD users on it when they have done so well.
Keep us posted !!!
Tony C. 7 year Sersone user
Posted by Tony C. on May 30, 2004, at 13:06:58
I just recently viewed the CBS Documentary on Serzone, and saw Dr. Wolfe of the Public Citizen Group. I also saw where he made the comment that it is "CRIMINAL" for the FDA to allow this Drug to be on the Market, and they should be prsosecuted as criminals...... Dr. Wolfe, I highly disagree. IN FACT, I think it is CRIMINAL for people like yourself and others to call for a COMPLETE Ban on a drug that has been a life saver for so many including myself. I feel it is criminal if your successful in taking away my freedom to have this life saving chemical for myself to be on to live a normal productive life, and to NOT be in a mental abyss. I am highly offendedm and trying to be as positive as I can, but the fact is I want to cry, and cry hard that people may be suceesful in upturning my life, and telling me to go to a market of drugs that offered me no relief or hope. Dr. Wolfe says there is no evidence that this wroks any bettere than other ones. I disagree again, for me and many more there is evidence, cause we took the others, and we felt the MOST relief from this Drug/Serzone Nefazodone - I beg the FDA to take us USERS into consideration if they feel like bending to the pressure groups. Consider us, the users. I think they ought to do a follow up on how many CANADIEN lives were turned upside down from the complete ban. This is AMERICA the land of the free, I feel I should be free to have this agent available to me FOREVER if need be, as it was ALL that helped me. There must be away if this is banned, that it is available to ALL long term users. I really feel so sad from this situation, we must let the FDA hear our concerns, respectfully and nicely. I mean all I was ever told as I will NEED this the rest of my life, and now they may yank it, and besides HELLISH withdrawal, be sent back to options that did not work. Maybe the pressure groups and lawyers think I should just go get Electric Shock treatments as an alternative. Stand up for us users of nefazodone someone PLEASE !!!
Tony C.
Posted by Tony C. on May 30, 2004, at 13:33:06
In reply to SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by Tony C. on May 30, 2004, at 13:06:58
ALL I ASK IS FOR IT TO BE AVAILABLE TO PEOPLE THAT IT WORKED FOR, EVEN IF IT IS NEVER PRESCRIBED TO NEW PEOPLE. THERE HAS TO BE A WAY TO MAKE EVERYONE HAPPY
TONY C.
Posted by flmm on May 30, 2004, at 16:22:06
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by Tony C. on May 30, 2004, at 13:33:06
Is this THE famous Tony from the DIT sight?! I remember you. Come on man, Serzone is not the only drug out there! I was on it 2 years and transfered over to Lexapro with no problems. I went to 150 and started Lexapro while I was still on Serzone. Took it for a couple weeks and went off when Lex kicked in. I feel much better now! Serzone is really not that great unless you take it in high doses anyway! That is where the liver danger starts! Try Lex, my mood is way better, no panic attacks! I was always cranky on Serzone, but no panic and good sex! Week med overall!
Posted by SLS on May 30, 2004, at 16:34:59
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 30, 2004, at 16:22:06
> Is this THE famous Tony from the DIT sight?! I remember you. Come on man, Serzone is not the only drug out there! I was on it 2 years and transfered over to Lexapro with no problems.
You are just one person and your biochemistry is unique. Not everyone responds to medication the same way you do.
- Scott
Posted by flmm on May 30, 2004, at 16:45:08
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT » flmm, posted by SLS on May 30, 2004, at 16:34:59
That may be true but I do not believe Serzone is the only med that can help him! It is hard to withdraw from all meds but it must be done sometimes. I have been on most of the antidepressants and they all work for the most part. The only variable seems to be side-effects and withrawal. But to think Serzone is the only med that can help him is just denial and fear!
Posted by SLS on May 30, 2004, at 19:21:12
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 30, 2004, at 16:45:08
Hi.
> > > Come on man, Serzone is not the only drug out there! I was on it 2 years and transfered over to Lexapro with no problems.
> > You are just one person and your biochemistry is unique. Not everyone responds to medication the same way you do.
> That may be true but I do not believe Serzone is the only med that can help him!
How did you arrive at your conclusion?
- Scott
Posted by Tony C. on May 30, 2004, at 19:48:20
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 30, 2004, at 16:22:06
Don't find it hard to believe, and NO I am not the TONY your referring to. There is another TONY P. On here, perhaps he is the one your thinking of. It goes back to the OLD TRUTH ---> What doesn't work for you, worked GREAT for me, what does help you did NOT help me.
Tony C.
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