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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 34 to 58 of 58. Go back in thread:
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!
Posted by Tony C. on May 31, 2004, at 20:00:57
In reply to Re: FDA, ... not 'Lawyers' to decide on this 'Issue', posted by feelndwn on May 31, 2004, at 19:27:03
Well, how I see it is had I have known I would of gotten a raw deal like this, after the horrific depression I was in, I would of just given up in the first place, for ME this is the cruelest of cruel things to happen with a clinical depression as mine. I was 1 step from Electric Shock Treatments, until Serzone helped save my life. Paxil, Elavil, Zoloft, Trazodone, Pamelor, Noritryptoline etc. etc. etc. did NOTHING, but I responded only to THIS Medication. I know Dr. Wolfe says there is no proof this is any better than the rest, BUT IT IS for Certain Individuals. I mean are we just #'s ? I mean has anyone takin the time to think well if we disrupt peoples stable life by FORCING them off of Nefazodone after many years, if they relapse and blow there brains out who cares, as long as #57 out of 7,000,000 doesn't get SEVERE Liver problems. I know Public Citizens is concerned about things, and I am glad they are, HOWEVER THEY ARE WAY OFF ON THIS ONE, AND DID NOT BOTHER TO HEAR THE USERS WHO HAVE BEEN SAVED BY THIS DRUG. Please people we are a small group, all I ask is for us to ask the FDA and whoever makes your generic, to see if there is a special program that can allow us to continue our normal life, and have this available if we sign, or agree we understand the risk. FOR EXAMPLE ----- Lets PRETEND 20,000 people died from Serzone out of 7,000,000 users an OVERESTIMATE of deaths, take the figures and it adds up to you still have way less than a 1% chance of dying, and it cuts it down to 1 out of every 350 people will die from liver failure. Now that concerns me alot more than 1 out of every 250,000 - I mean lets take the actual figures, they say 119 adverse events out of 11,000,000 worldwide users, and they say it could of been 10X the 119 due to under reporting so lets take 1,190 divided by 11,000,000 equals a 0.0001 chance of getting liver failure and a 1 in every 9,243 users you will develop it. Still minimal, this is not a MONSTER - I mean if you take 8 extra Strength Tylenol in one shot, you will most likely die of liver failure. Yet I read one guy overdosed on 16,000 mg of Serzone, he vomited and had some lethargy, and recovered, no liver problems etc. So really is it even Hepa Toxic ? Or did the people Drink and take drugs plus Serzone that died !!! I love you all for your comments, lets work together to let people hear our issues politely.
Sincerely - Tony C.
Posted by HappyGirl on May 31, 2004, at 20:31:05
In reply to Re: SERZONE/NEFAZODONE ISSUE // To: flmm, posted by flmm on May 31, 2004, at 19:37:17
Hi:
Thanks for your response on my inquiry!!!However, the following quote makes me a bit 'perplexed,' although there is some truth on it, ...
>>>> Thinking this way is a part of this mental illness by the way! ie panic disorder, anxiety. <<<
Yes, ... unfortunately, my mental condition is pretty 'fragile' due to M.I. However, I *have* still a good-functionable mind most of the time thanks to the stabiliby I gained through therapy and med. combo.
Regading Nefadozone's future, ... I keep fighting on this issue as long as possible. I am pretty 'optimist,'.... not to discontinue Nefadozone in the near future. At least, a 'good' replacement/AD similar to Nefadozone comes to the market, as seeing some of SSRIs are still on the market despite of 'warning'/protest from some of users. Luvox is one of those classification, if my recollection is correct.
H.G.
Posted by jay on May 31, 2004, at 20:34:26
In reply to Re: DEAR FDA PLEASE HEAR US OUT NEFAZODONE, posted by Tony C. on May 31, 2004, at 20:00:57
Tony, I greatly understand your plea. But please don't use all capital letters, as it is 'shouting'
and hard on the eyes..please and thanks.Best to you,
Jay
Posted by HappyGirl on May 31, 2004, at 23:13:50
In reply to Re: FDA, ... not 'Lawyers' to decide on this 'Issue', posted by feelndwn on May 31, 2004, at 19:27:03
Hi feelndwn:
I am unable to comprehend the following quote/expression in your writing;
>>> the public interest organization has done nothing but good things and continues to. <<<
--- I just wonder what kind of good thing/helping they did in the past, since I was not aware of their 'true' existence until I came here to read an article written by Tony C. ---
Can you clarify on their accomplishment? What kind of *help* they did to the public citizen? Because, I was pretty much 'home-bound' until the stabilization through med. combo. mostly that happend just a couple of years ago or so.
However, seeing this, powerful org. still existing, ... yes, I think that they have been doing 'some' good work towards the public in general.
Also, I totally agree with you regarding Nefadozone. It's only 'one-sided' that brings up 'heated-debate' among us, long-term users.Hopefully, through this 'ordeal,' we, Serzone/nefadozone users getting closer in order to succeed in our plea, ... to keep Nefadozone on the market.
Thanks for your writing on this regard!!!
H.G.
Posted by Dr. Bob on June 1, 2004, at 1:30:37
In reply to Re: please be civil, posted by Tony C. on May 29, 2004, at 8:06:56
Posted by Dr. Bob on June 1, 2004, at 2:15:07
In reply to Re: DEAR FDA PLEASE HEAR US OUT NEFAZODONE, posted by Tony C. on May 31, 2004, at 20:00:57
> THEY ARE WAY OFF ON THIS ONE, AND DID NOT BOTHER TO HEAR THE USERS WHO HAVE BEEN SAVED BY THIS DRUG.
I asked you before not to to jump to conclusions about them or to post anything that could lead them to feel accused or put down, so now I'm going to block you from posting for a week.
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 email me, or redirect a follow-up to Psycho-Babble Administration after your block is over.
Thanks,
Bob
Posted by Dr. Bob on June 1, 2004, at 2:16:24
In reply to Re: SERZONE/NEFAZODONE ISSUE PLEASE READ IMPORTANT, posted by flmm on May 30, 2004, at 16:45:08
> to think Serzone is the only med that can help him is just denial and fear!
Please don't jump to conclusions about others or post anything that could lead them to feel accused or put down.
If 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.
Sharing something about your own issues and their possible role in your reaction might be an interesting exercise -- and might help others respond to you supportively.
Thanks,
Bob
Posted by Caper on June 1, 2004, at 22:05:16
In reply to Re: please be civil » flmm, posted by Dr. Bob on June 1, 2004, at 2:16:24
As a future lawyer, I just had to say this.
Both sides on a dispute like this will eventually have lawyers, it's just the way it works. The lawyers probably don't really know one way or the other what's best. They simply take the case if it has any legal merit, and leave it to the courts or the administrative law judge or whomever, to decide based on both sides evidence. Blame the FDA and the "Public Interest Groups".
Hopefully you Serzone advocates can stir up enough controversy to cause a second look at the statistics, etc. Protest any way you can, be very vocal, be a pain in the ...um ...whatever. As my father always says, "the squeaky wheel gets the grease." I really do feel awful for those of you who are doing well on Serzone, and I hope it works out for the best. I really don't see why Serzone is being taken off the market when Cylert (the ADD med) is still available. Seemed to me it had much higher incidences of liver damage.
Best wishes,Caper
Posted by HappyGirl on June 2, 2004, at 0:18:20
In reply to my sympathies, but please don't blame the lawyers, posted by Caper on June 1, 2004, at 22:05:16
Hi Caper:
Thanks for your VERY 'caring' and 'concerned' writing for us, long-term Serzone/Nefadozone users. You sound like a VERY nice person, ... I mean, ... a helpful and competent, 'future lawyer.'
Also, particularly the last paragraph of your writing giving me a lot of encouragement and a 'HOPE' on this issue, ... Nefadozone's future.>>>> Hopefully you Serzone advocates can stir up enough controversy to cause a second look at the statistics, etc. Protest any way you can, be very vocal, <<<<
I will do my best to keep writing to both FDA and Nefadozone Maker, 'Mylan,' because this med., Nefadozone is one of the best meds. I found in my life.
I have no idea about 'regulation' or 'formal' languages on drug marketing, ... but hopefully FDA and the manufacture keeps Nefadozone on the market, at least until a good AD similar to Nefadozone comes to the market.
H.G.
Posted by AndrewMc on October 13, 2005, at 10:42:55
In reply to Someone here, ...can help us on Nefadozone???, posted by HappyGirl on May 29, 2004, at 8:30:16
I too have been on Serzone for over 6 years. It worked well the first 3 years or so but has been failing me the last few years. I take 500mg a day, which I understand is a rather large dose.
Does anyone have any information on how to get off that much Serzone. I feel I might as well get off it because it appears it will be withdrawan completely from the market.
Posted by Nefazodone Boy on October 13, 2005, at 11:59:03
In reply to Re: Someone here, ...can help us on Nefadozone???, posted by AndrewMc on October 13, 2005, at 10:42:55
I take the Generic Equivalent, and it works as good if not better than the Brand Name Serzone did in my opinion for me that is. Serzone was never FORCED to be removed, it was voluntarily withdrawn. Nefazodone is a good med for me, I would be HYSTERICAL if I did not have it.
Nefazodone Boy
Posted by AndrewMc on October 14, 2005, at 8:25:47
In reply to Re: Someone here, ...can help us on Nefadozone???, posted by Nefazodone Boy on October 13, 2005, at 11:59:03
I had my pharmacist call the manufacturer of the only generic nefadozone there is and ask what the future of the product was. She told me that they said they planned on maing for a long time to come.
Of course that may change if they start getting sued.
Posted by Nefazodone Boy on October 14, 2005, at 8:58:34
In reply to Re: Someone here, ...can help us on Nefadozone???, posted by AndrewMc on October 14, 2005, at 8:25:47
Andy, mine is Teva - There is Mylan, Dr. Reddy and many more I believe there is 7 or 8 different companies that make Nefazodone. Just 1 might be the ONLY one that your pharmacy deals with. My Pharmacy deals with Teva - Others use Mylan etc. - I read on a web site that just recently that Nefazodone just like the Serzone is great for calming and helping with sleep. I testify to that also for myself - Sleepless before Serzone/Nefazodone back to my old self on just 200mg daily - But it is a booger to cut down, that is why I panicked about Serzone and was relieved the FDA did NOT ban it, cuase they feel each persons depression is unique, and Nefazodone is whats works for people like me, but nothing else.
Posted by Speed on October 17, 2005, at 13:26:50
In reply to Re: Someone here, ...can help us on Nefadozone???, posted by AndrewMc on October 13, 2005, at 10:42:55
Serzone worked for me about 5 years, then seemed to do nothing. I had no problem getting off of it.
Posted by AndrewMc on October 17, 2005, at 14:04:11
In reply to Re: Someone here, ...can help us on Nefadozone???, posted by Speed on October 17, 2005, at 13:26:50
> Serzone worked for me about 5 years, then seemed to do nothing. I had no problem getting off of it.
Good to know, I was wondering how you reduced your dosages.
Years back, I was up to 60mg of Paxil a day, thougt I was going to die coming off it. They are full of it when they say there are no physical withdrawals from Paxil
This is the end of the thread.
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