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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 14 to 38 of 58. Go back in thread:
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.
Posted by HappyGirl on May 30, 2004, at 19:59:31
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 30, 2004, at 16:45:08
Hi flmm:
You are VERY lucky in regard to ADs. However, not everyone like you. In my case, I can NOT take any of SSRIs, because S.E.s from SSRIs are so severe that once I almost ended up in E.R. Then, you need to be 'bit' nice to us, 'faithful and loyal Serzone users.'
First of all, .... if I am able to tolerate any of ADs, like you, ... I already switched to other AD, such as Lex. which is one of the most reputable and effective ADs. In this regard, I envy you taking Lex. without any problems and whatever.
Your comment and conclusion on Serzone/Nefadozone are,.... quite frankly, NOT WELCOME at this moment. You need to be more sensitive on this issue. If you do NOT agree with us, Serzone/Nefadozone users, better to leave us ALONE, ... NO opinion on this issue.Thanks for your understanding on this matter, in advance.
H.G.
Posted by Simcha on May 30, 2004, at 20:30:54
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by HappyGirl on May 30, 2004, at 19:59:31
I want to apologize to all of you for whom Nafazadone has worked exclusively that may have to get off of Nafazodone. One of my pdocs was trying to choose between Nafazodone and Wellbutrin to replace EffexorXR for me. For some reason the Wellbutrin won.
I could not think of what it would be like after three years (since we made that switch) to have to go back to the drawing board. Med changes are just terrible. It's even more disturbing if nothing else worked in the past.
I really am pulling for all of you that might have to switch. I could have been in the same boat as you...
Blessings,
Simcha
Posted by flmm on May 30, 2004, at 22:14:58
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by HappyGirl on May 30, 2004, at 19:59:31
HG. My opinion is just that, my opinion! Do you speak for the entire board when you do not want to hear mine? I do not agree with you and yet I will not ask you to stop posting! Please allow me to display my position. I have not been rude etc. I just think believing Serzone is the only drug tthat will help you is keeping you from getting better; just my opinion!
Posted by Noa on May 31, 2004, at 9:12:00
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 30, 2004, at 22:14:58
flmm, you can express you opinion, but when you say that we should be able to just go off Serzone and take something else and if not we are just giving in to fear, it makes me feel that you are presuming to understand my situaion when you do not.
I do take another med--Effexor. But I also take Serzone. I tried a lot of medications before being able to settle on the combination I'm on now. I had a lot of problems with other medications--either they didn't work well enough, or I could not tolerate the severe side effects, or they pooped out after a while.
Effexor has worked on my depression, but I can't tolerate the dose that would be sufficient because of severe side effects. By adding Serzone, and then increasing serzone and lowering the Effexor, I have been able to find this combo of meds that still does produce some annoying but tolerable side effects, but none like the ones when I was on a single med at higher doses. The Serzone adds AD effect but it also counteracts the SEs of the Effexor. I have been on this combo for about 5 years and for the last 4 years I have not had a recurrence of a major depressive episode!
Being in remission on a stable medication combination after years of severe depressive illness and the pursuit of medications that would work, I am loathe to destablize myself by having to go through a med change.
AND, there is nothing else like Serzone. I cannot take another SSRI--that would just duplicate the kinds of negative effects from Effexor that I eliminated by combining Effexor with Serzone and being able to lower the Effexor dose. Serzone is different chemically. Its only relative is Trazadone which is not a very effective AD and has more SE's anyway.
I am glad you have had such good luck with ADs and being able to transfer smoothly from one to another. But I am not that lucky and there are others like me who are also not that lucky.
Please, please don't make light of our situation.
Posted by flmm on May 31, 2004, at 11:56:44
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT » flmm, posted by Noa on May 31, 2004, at 9:12:00
Noa, I am not making light of the situation, and understand your feelings. However, if they stop making Serzone you guys are going to have to figure something out. I saw this coming 1 year ago and started the journey to find another med that works and got off Serzone. It was hard but possible! Denial of the inevitable will make things worse! You all have time and it will work out in the end. What would you do if Serzone poops out like all other meds? You would change meds!
Posted by HappyGirl on May 31, 2004, at 13:50:32
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 31, 2004, at 11:56:44
Hi flmm:
Are you working 'for' the Public Citizen Group headed by Dr. W.?Just I'm curious about your intention on this matter.
If you can answer on this, I'd be truly appreciated.
Thanks for your time in advance!!!
H.G.
Posted by feelndwn on May 31, 2004, at 14:03:38
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 31, 2004, at 11:56:44
I just have to say that I have been around the block with medications for my anxiety/depression for over 15 years and nothing has ever worked like nefazodone. If, or maybe, when they take the generic off the market it is going to flip my life upside down too.
It's sad to see all these new lawyers jumping on the bandwagon.
Posted by HappyGirl on May 31, 2004, at 16:54:41
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by feelndwn on May 31, 2004, at 14:03:38
Hi:
>>> when they take the generic off the market it is going to flip my life upside down too.
It's sad to see all these new lawyers jumping on the bandwagon. <<<<--- In my knowledge from reading and hearing, it's 'FDA,' . .. *NOT* Lawyers, ... to decide Nefadozone's future. ---
In my recollecltion, on my visit at FDA site regarding 'Serzone,' ... I read that 'Public Citizen Group' asking FDA to discontinue Serzone. I can not remember exact month of last year, 2003, but my vivid memory is 'NOT' from those lawyers.
Besides this, ... my common-sense tells, they/lawyers have NO concern over whether Serzone would be still on the market or not. Rather, it's nothing but their 'financial rewards,' since most of sue-lawyers are enjoying their 'excellent' health, both physically and mentally in order to maintain daily challenge/fights in the court. Then, I truly doubt about their knowledge on M.I. in the first place.All I want now is to stay on Nefadozone as long as possible, ... preferrably 'permanently' or at least until good/better AD arrives.
Lastly, ... after having read some of posts above,... I started to 'really' concern about Public Citizen's intention. Quite frankly, it's quite scaring to speak up my opinion, ... not to mention to write any form of letter to them.
Rather, it's a right thing for me now is to keep writing both Mylan and FDA asking Nefadozone to stay on the market, because Nefadozone is the best AD for me.
H.G.
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