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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 19 to 43 of 58. Go back in thread:
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.
Posted by Tony C. on May 31, 2004, at 17:33:41
In reply to Re: SERZONE/NEFAZODONE ISSUE // To: flmm, posted by HappyGirl on May 31, 2004, at 13:50:32
Well I agree, the FDA is our best hope to hear our legitimate concern. I wonder if there is any ld to the lawyers working for the right to take Serzone/Nefazodone .... I Guarantee there would be if a lawyer was in my shoes, and felt the benefit of this medicine. People lets be nice and sound reasonable and very concerned, and tell the FDA to PLEASE think of us when they make there final descion on Nefazodone, and the drug companies. This is a serious matter, for us users. Does anyone know when the FDA is to review new data and make a decision ?
Sincerely Tony C.
Posted by Noa on May 31, 2004, at 17:51:56
In reply to Re: SERZONE/NEFAZODONE ISSUE // To: flmm, posted by Tony C. on May 31, 2004, at 17:33:41
There are two issues with availability: one is if the FDA bans it. The other is if the company that is still making and selling it decides to bow out like the brand name company did. They can do this without any force from the FDA. They can make a business decision that it isn't worth their while because of potential law suits, or because of uncertain sales in the future if publicity causes people to not want to use this medication or if publicity causes doctors to shy away from prescribing it.
I think the truth is that most people who need antidepressants don't have the complications some of us have had and do ok on the first med or two they try. And I think doctors are probably going to want to prescribe ones that have more public approval if they can.
The only major saving grace, I think, in terms of Nefazodone's popularity is that it is an alternative for many people to SSRIs when SSRIs cause sexual side effects, which obviously are a major drawback for a lot of people. But Wellbutrin has been advertising for that niche pretty strongly. The difference is that Wellbutrin tends to be an activating medication while Serzone is a more sedating one (I think--although I know different people have different reactions).
To get docs to prescribe meds, the companies do a lot of direct marketing to the docs, of course, as we all know. I don't think generic companies spend money that way, though, do they? So, what happens if docs shy away from this med, and sales are poor relative to other antidepressants?
Posted by Noa on May 31, 2004, at 17:54:00
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 31, 2004, at 11:56:44
flmm, I'll deal with it if I have to but if I can continue with this med, I will. As for poop out, I would deal with that, too, but it's shown no signs of it ever, whereas the other meds that pooped out on me did so within a couple of years.
I'm not denying the possibility that I could have do change meds but right now I am hoping I won't have to, and trying to advocate for keeping the med around.
Posted by feelndwn on May 31, 2004, at 19:27:03
In reply to FDA, ... not 'Lawyers' to decide on this 'Issue', posted by HappyGirl on May 31, 2004, at 16:54:41
Yes, I meant the sue-lawyers of course. But I do see that it is in the FDA's hands at this point as far as nefazodone goes.
I want to thank you people for posting all of this information on how you are taking action. I too will now be sending letters to Mylan, the FDA, and to the public interest org. To me, the public interest organization has done nothing but good things and continues to. But, as far as their portrayal of nefazodone goes it seems they are making it out to be some sort of a monster to the public. It all seems very one-sided.
Hmmm. I don't know. We'll see what happens. But, until then I'm going to put my 2 cents in for what it is worth.
-Thanks and love to all, who like me, have come to know this medication as a miracle
Posted by flmm on May 31, 2004, at 19:37:17
In reply to Re: SERZONE/NEFAZODONE ISSUE // To: flmm, posted by HappyGirl on May 31, 2004, at 13:50:32
HG, I do not work for anyone! I am a previous Serzone user who thought , like you guys, that it was the only med that helped me. Thinking this way is a part of this mental illness by the way! ie panic disorder, anxiety. It is, was, very clear to me that Serzone was, is going away eventually so rather than be a victim, I became proactive. Waiting for a problem to happen is no way to live. The writing is on the wall! There are plenty of meds that help, or combinations. You are not as fragile as you think! Part of winning over panic and anxiety is believing you can do it in other ways you did not think possible! Sorry if I seem insensitive, but I have had these problems over 10 years and a backbone is needed if you want to be well. The meds can't do it all!
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