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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 4 of 4. This is the beginning of the thread.
Posted by Tony C. on June 10, 2004, at 9:47:15
Hello all, Serzone is gone, but that is because of Voluntarily removing it from the Market by Bristol Myers Squibb), due to poor sales, not safety issues the FDA has assured me. I did in fact personally call Public Citizens, and voice my concern to them, the lady was very nice, I told her my concern, I was very polite also. She told me I have a valid concern, and she would send it to the proper department, to at least hear a users side. But I know it probably won't do anything. I told them I was grateful for them looking out for people, BUT I think people like myself who have responded so well and have done so good, should at LEAST have the oppurtunity for a channel to be available to keep us on this as long as we understand the risk. I was very nice, not rude so was she. I think our best bet is to petition the FDA to at least not ban it, they told me that as of right now they have no plans to do so, and that no pressure group or lawyers can FORCE them to do anything, BUT that the Lawyers and Pressure groups can dramatically influence Doctors so they do not prescribe it as much, and that there pressure can scare patients off of it, or new users from wanting to try it, which may ultimately lead to the Generic Drug companies saying "OUR SALES ARE POOR, WE WILL DISCONTINUE MAKING IT" which could eventually mean people like me are screwed entirely. For me I am in day # 9 of Filing off the same small piece, and so far I am here, and have not been doing to bad as far as discontinuation symptoms, I do not care if I have to file same small piece for 2 weeks, then a little more for 2 weeks, then more for 2 weeks etc. or if it takes me 1 and 1/2 years to get off of this, I will try it. I prefer to stay on it for life, BUT it is way to controversial, and I would be in plain denial if I acted like I will always have that option. Low and Slow works best for me. I do feel symptoms though, even this low and slow, but thankfully they are transient and not to bad thus far. If I get to a point where I feel like complete crap I will tell my Doctor. PLEASE PEOPLE NEVER TRY TO GET OFF OF YOUR MEDS ON YOUR OWN !!! I have done alot of research, and there are Doctors out there that realize people must go low and slow. I will try to post you some of my research about tapering.
I suggest you call the FDA and voice your concerns, as they are our best shot, then maybe they will tell the Generic Companies alot of people want to stay on this NEFAZODONE, or at least that we should have an outlet, and least someone will make it.
Keep in touch and STAY POSITIVE !!!
Sincerely - Tony C.
Posted by HappyGirl on June 11, 2004, at 9:30:19
In reply to About SERZONE/NEFAZODONE for us users PLEASE READ, posted by Tony C. on June 10, 2004, at 9:47:15
Hi Tony C.:
Thank you very much for having posted here about the 'terrific' conversation with the Public Citizen Group.In my case, .... I plan to stay in touch with my pdoc. whether I should keep on Nefadozone or not.
This 'generic form' of Serzone is EXACTLY as same as brand name, Serzone in all respect, ... especially 'efficay/effectiveness.' My generic form is mfged. by Mylan Lab. which is located in Pa.(I believe). Mylan Lab. is one of the best 'Generic' pharm. mfgs. in USA. Then, my trust is so high that I keep in touch with them concerning 'Nefadozone's' future.
Thanks again for your thoughtful and caring post above. I truly believe that a lot of 'long-term' Serzone users are quite happy about your endeavour in trying to keep 'Nefadozone' on the market.
H.G.
Posted by Tony C. on June 11, 2004, at 12:47:31
In reply to Re: About SERZONE/NEFAZODONE for us users PLEASE READ, posted by HappyGirl on June 11, 2004, at 9:30:19
Hi Happy Girl, we CAN'T give up, and I do NOT plan to. PLEASE do all that you can to ask the FDA and whoever makes your Nefazodone, to see if they can always continue to make it. I have worked relentlessly calling, and emailing people, FDA Teva etc. I believe Teva makes mine, and YES the Generic is POSITIVELY as Good and Effictive as the SERZONE was. As I said, if someone announced that this drug will always be available, I would DEFINITELY stay on it for life. My Plan is to PROVE to myself that I can work down on this medicine, not necessarily get off of it, but I have FAILED several times in the past going 50mg down per day, 25mg per day, even 10mg per day. I have filed roughly 5 to 10 mg per day for last 10 days, and am doing fine, for myself I want to PROVE I can get down on the dosage and survive, it will be a BIG Psychological boost for me, so if I ever am FORCED to get off I can assure myself I survived coming down slow. PLEASE NOBODY ELSE TRY WHAT I AM DOING !!! I do not want to be completely off of this ever, I am shooting for at least 1/2 strength compared to what I have done for the last 7 years. But I am doing it slow and low enough to allow my brain to produce Seratonin on its own and adapt to not having the drug, as I said I did alot of research on this, and I am following the recommendation of EXPERTS who are 100% aware of the Nasty Side effects for alot of people who come down to quickly. One Doctor told me he doesn't think they will ever get rid of Nefazodone cause besides being an EXCELLENT med for Anxiety and Depression, it has helped way to many people to abandon. I hope in the long term he is right, I will repeat over and over 1,000,000 times if I have to, the long term users as myself, do NOT deserve to have there stability or their life messed up, by forcing them to switch after so many years, I believe that can be LIFE THREATENING to mess with stabilized people like that. Suicidal feeling could return, etc. As I said to the FDA I think they need to do a follow up on how many Canadiens had there life turned upside down BIGTIME, Relapse, Suicide etc. by forcing them off this medicine. I do have some uncomfortable feelings here and there, but they are not to bad so far, thankfully, and I hope I can keep going, no anxiety or depression returning yet. Just the aches that come and go. Stay in touch Happy Girl and all, we all need each others support.
Sincerely - Tony C.
Posted by HappyGirl on June 11, 2004, at 17:24:29
In reply to Re: About SERZONE/NEFAZODONE for us users PLEASE READ, posted by Tony C. on June 11, 2004, at 12:47:31
Hi Tony C.:
I truly understand regarding current 'Nefadozone' situation where we have NO idea how long this med. will stay on the market. There are 'several' reasons for us to be suspicious, ...a BIG one is 'Serzone' will be off the market just a few days away. Another one is still to worry about 'the public citizen group's' STRONG resentment against Nefadozone's existence, since its Brand one, 'Serzone' is taken away soon.
However, .... to concern over Nefadozone's future is, ... in my opinion, not a healthy way to deal with. Rather, I trust my pdoc.'s professionalism to help me out.For me, ... like old saying, .... 'one problem/thing at a time' approach.
In case of unfortunate circusmstances, ... discontinuation occurrs, I will consult with my pdoc. immediately to find a good/right replacement for Nefadozone.
H.G.
This is the end of the thread.
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