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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 35 to 59 of 60. Go back in thread:
Posted by stargazer on November 19, 2006, at 20:09:25
In reply to Do the drug companies know their meds suck??, posted by linkadge on November 19, 2006, at 17:56:16
The drug companies only know that they can't keep up with the demand for new drugs, so it's irrelevant if they work or not. If a product sells, the assumption is that it must be a good product. Once sales fall off, most companies have another med ready to market and you know we are all lining up to try it. And if our insurance pays for it, cost never plays a role in our decision to take it or not. If we were all paying out of pocket, there would be more demand from consumers for products that actually work.
I just tried CYMBALTA, outrageously expensive, followed by seroquel (up to $1000/mo) and now ENSAM ($500/30 patches). I would not be on these meds if I had to pay for them. My pdoc gave me samples, but I may not be able to continue taking them due to costs. When I toldhim what the drugs cost,he had no idea, but was shocked.
I do believe we are being manipulated by the drug companies with really marginal products because consumers want the newest(aka most expensive), most advertised ("Who does depression hurt...everyone") drugs and when the results are poor, there is no money back guarantee, so what is the financial loss to the company for having a defective (side effects?) or ineffective product (long term results).
Does anyone know what is the average time on one AD from initial prescription to discontinuation
of it? I would bet that is not very long...SG
Posted by Phillipa on November 19, 2006, at 20:14:19
In reply to Re: Do the drug companies know their meds suck??, posted by stargazer on November 19, 2006, at 20:09:25
Stargazer and I'm paying out of pocket no insurance for meds other than the new CVS card. Love Phillipa ps your update today?
Posted by MARTY on November 20, 2006, at 0:52:36
In reply to Do the drug companies know their meds suck??, posted by linkadge on November 19, 2006, at 17:56:16
> I suspect they're happy if they can sell drugs, but do they know that their medications are relatively useless?
I too am frustrated about meds not working great for me. But I think everybody do their best to produce the best meds they can. Obviously the motivation here is money.. but thanks god they love cash so much they are pushing themself to the maximum.
My only concern is if they are sometimes choosing a ligand over another because of it's potential for addictiveness/hard withdrawal.. KNOWING there was others that was potentially better.
Marty
Posted by linkadge on November 20, 2006, at 17:31:25
In reply to Re: Do the drug companies know their meds suck?? » linkadge, posted by MARTY on November 20, 2006, at 0:52:36
But, do the drug companies think, "cymbalta is a great product because it sells", "or cymbalta is a great product cause it actually works" ?
Linkadge
Posted by stargazer on November 20, 2006, at 23:06:07
In reply to Re: Do the drug companies know their meds suck??, posted by linkadge on November 20, 2006, at 17:31:25
How do they know it works well, what kind of followup do they do for people taking the meds?
No one has interviewed me or sent me a survey in 25 years of taking these meds. And the doctors are not always the best person to ask about patient results, the patient is. I worked with a doctor who said most of his patients were getting good results with ECT. His notes would always say "improving, no side effects..." and I knew that this was not true. The patient would say they were not getting any benefit and this comment would be discounted by the pdoc. This pdoc had a fincancial incentive in continuing the treatment, so his comment should be disregarded.
How are long term studies on these drugs done? Do you know? I am curious how they determine whether a drug is doing what it was developed to do.
I don't think all drug suck, but I am not sure how many are really good. My experience has been mixed and from what I see here, there are alot of unhappy people struggling to find better medications, at least I am. But I think the people here are very proactive in their treatment and many have diagnosis/symptoms that are highly resistent to meds. At least that's my assessment of things.
If I thought drugs were not part of the answer I would have given up long ago. I don't need meds to live, but I have experienced good control of my symptoms sporatically with medication. I just want there to be a better way to determine what meds should be tried first, then second for specific symptoms and for there to be a more consistent approach to drug trials. It doesn't have to be this haphazard, does it? Isn't this a scientific process?
SG
Posted by Phillipa on November 21, 2006, at 17:10:01
In reply to Re: Do the drug companies know their meds suck??, posted by stargazer on November 20, 2006, at 23:06:07
No there as never been a drug rep beating down my door asking me if their meds work. So good quesion. How do they really know? No mailouts you'd think a pharmacy could provide names and meds taken or the docs too. Love Phillipa
Posted by MARTY on November 21, 2006, at 17:28:18
In reply to Re: Do the drug companies know their meds suck?? » stargazer, posted by Phillipa on November 21, 2006, at 17:10:01
The mouse tell them ... they swim longer on AD when put in a hopeless situation: like in a big bowl of water.. they count the time before she sunk.
lol
Marty
Posted by Quintal on November 21, 2006, at 17:31:18
In reply to Re: Do the drug companies know their meds suck?? » stargazer, posted by Phillipa on November 21, 2006, at 17:10:01
That's a good point. Who's claiming drugs like SSRIs are so effective and tolerable? Mostly GPs, pdocs and drug companies from what I can tell. Mostly people who have never actually taken them.
The real life results differ markedly with the official statistics produced by drug companies. From what I've read elsewhere and experienced myself over many years drug companies would soon lose money if they had to rely mostly on patient feedback for their efficiency statistics.
Q
Posted by yxibow on November 21, 2006, at 17:43:36
In reply to Re: Do the drug companies know their meds suck?? » stargazer, posted by Phillipa on November 21, 2006, at 17:10:01
> No there as never been a drug rep beating down my door asking me if their meds work. So good quesion. How do they really know? No mailouts you'd think a pharmacy could provide names and meds taken or the docs too. Love Phillipa
Its known as "Phase IV" or after approval data.
Data is gathered by the FDA in its adverse reporting program from both physicians and patients. There is a program, not perfect, mandated by the FDA called The Food and Drug Administration Modernization Act (FDAMA) of 1997.
( http://www.fda.gov/cber/pstmrkt/pstmrkt.htm )
This all-for-one concept that all drugs "suck" is just as much inane of some of the overhype that drug companies make in their advertisements. Its a continuum -- and certain medications may only have a 30% response rate. Heck, heroic chemotherapy trials may have a 10% response rate or less.One reason I think we get into these debates is a significant number of people are on here because their medications are not working for them. Its not a criticism of people here -- but will always be human nature that the loudest criticisms naturally come from those who are suffering (and politically, those who have certain agendas -- which I am not trying to compare to patients here, I'm more comparing to other online sites, so I'm not attempting to insult people's intelligences on this board by any means). Consequently, a view is formed that medications are all wrong and they all "suck." What about the thousands if not millions of people across the world who take medications and are lucky enough that they only have to take one or two a day, and they do "work," however you define "work."
-- Jay
Posted by stargazer on November 21, 2006, at 18:09:50
In reply to Re: Do the drug companies know their meds suck?? » Phillipa, posted by yxibow on November 21, 2006, at 17:43:36
Where can I read about the results of the studies, i.e long term outcomes? I'm curious what data is evaluated and # of patients included. It would be interesting to know how many patients that were in the pre-marketing studies were included in the post-marketing studies, and what was the length of time they were on the med, why did they stop it, etc.
I don't know that I have ever read this type of information, but the drug companies must have to follow the patients one year, 5 years after beginning the drug, in order follow long term results and adverse effects...SG
Posted by stargazer on November 21, 2006, at 19:03:06
In reply to Phase IV results where to read?/ yxibow, posted by stargazer on November 21, 2006, at 18:09:50
Obviously not all of the drugs suck for every one who takes it (I hope)but many do and I suppose it true of many classfications of drugs, i.e. chemotherapy, where the treatment can kill you. Seen that happen.
Obviously, alot of us here are expressing much frustration with the way the drugs are touted to be so much better than previous classes of meds and oftentimes the newer drugs are not really better, just different. They seem to be very similar as previous drugs, often with minor chemical tweaking , a new name and therefore a much steeper price. We are all encouraged to jump on the band wagon, hearing it is "improved" with "less side effects", our doctors convince us to try it, but after trying it for a few weeks or months, find it really is no better than it's predecessor (from Celexa to Lexapro, was there an improvement?). I think Prozac being the first SSRI, was seen as revolutionary, but I havent't felt that any other SSRI has been that successful since, but there are too many now for any one to standout.
I would rather retry an older drug before trying another SSRI, SNRI, etc, since those drugs have never made me feel "normal" but seem to be the mainstay of treatment still. I tried Cymbalta thinking this was going to work ( loved that commercial), but had really disappointing results by making the depression much worse, alomst catatonic.
Are there other diseases where there is no clinical test for diagnosis and no specific course of treatment? I find the whole situation an impossible one, fraught with little hope at times, some random successes and much uncertainty and guesswork. It just gets very tiring to go through the lifecycles of depression and its revolving door...I feel sorry for my pdoc that his options are so plentiful but so unpredictable...SG
Posted by Phillipa on November 21, 2006, at 19:20:37
In reply to Re: Phase IV results where to read?/ yxibow, posted by stargazer on November 21, 2006, at 19:03:06
Yes and does any drug company know I have a box with about every SSRI and SSNRI in it that I haven't been able to tolerate? And have or would they agree to give me my money back when my pdoc says stop the med. I pay out of pocket and sure could use the thousands of dollars for living. Love Phillipa Or the pharmacies for that matter. Once you walk away from the counter you can't return them even if you've never opened the bottle. Cause you used samples first. Thats why I don't fill prescriptions till I've tried samples. Bags of them too. Do you know I was on cymbalta when it first came out. I was lucky with that one not one penny was ever spent as the pdoc supplied me with samples for six months.
Posted by stargazer on November 21, 2006, at 20:57:22
In reply to Re: Phase IV results where to read?/ yxibow » stargazer, posted by Phillipa on November 21, 2006, at 19:20:37
Phillipa,
You've got me thinking about what you just posted. We have all of our bags/boxes of meds we can't tolerate, right? I have a very hard time throwing those away...I'm a bit of a packrat...what if I need to take it again or give it to someone who could use it. So all of the thousands of us who stop taking the meds for one reason or another send all of our pills back to the Big Pharmas with a "form" which the FDA provides for follow-up. Then the pharmas send you a questionaire about why you stopped the drug and to find out what problems you had while on it. Makes sense to find out who had to stop a drug and for what reason.
Don't they want to know and learn from this? Now that would be the way to do some post-marketing followup...They have to do the pre-marketing studies to get drug approvals but why a lack of interest in follow-up studies? May affect sales if data substantiated drug discontinuation, no that can't be the reason no followup is done.
Would it be beneficial for patients to know the % of drug discontinuations and the reasons for the discontinuations? I'm really interested in seeing a side by side comparison of discontinuation rates, say at 1 month, 6 months, 1 year, etc. It would be a very complicated and time consuming project, but this what the pharmas do best... analyze data and provide statistics, along with, of course R&D. Outcomes are becoming the current focus in clinical arenas, so I'm sure this type of reporting will be required to support high drug costs and minimize risk of lawsuits from poor outcomes, including death.
If yxibow can tell me where to get a Phase IV report (online) to read, I can see what the current report contains, if anything relevant for the consumer to evaluate before trying a drug. Since I have gotten better at reading the package inserts, this should also be an interesting read.
Stargazer
Posted by Phillipa on November 21, 2006, at 21:39:55
In reply to Re: Phase IV results where to read?/ yxibow, posted by stargazer on November 21, 2006, at 20:57:22
Boy that would be something wouldn't it but the drug companies wouldn't publicise it. And I always read the packet inserts and used to get the docs mad when I would question some of the side effects and refuse to take a med cause of liver damage being high on the list or something like blood counts. Love Phillipa
Posted by Quintal on November 21, 2006, at 22:19:17
In reply to Re: Phase IV results where to read?/ yxibow, posted by stargazer on November 21, 2006, at 20:57:22
Casting my eye over the small pharmacy of unused and discarded tablets, capsules and syrups I possess I began to feel slightly guilty today. There are people all over the world in terrible pain who have are living in poverty and have no access to these meds I have rejected for, sometimes, trivial reasons when I put them into the wider perspective. I wish there were a way I could donate them via a compassionate need agency to people both in the west and in developing countries who are in desperate need. A pharmacological Oxfam of sorts.
Is anyone aware of such an organisation? If not is there a way of setting one up to collect and distribute them?There are no doubt laws to prohibit this sort of exchange of prescription drugs, but could the drug companies and pharmacies themselves not offer some sort of service like this where if a drug is unsuccessful you return any surplus to the dispensing pharmacy, fill in a questionnaire and the results are logged and the medication then redistributed?
Q
Posted by stargazer on November 21, 2006, at 22:31:55
In reply to Re: Compassionate Need Meds Redistribution » stargazer, posted by Quintal on November 21, 2006, at 22:19:17
Would make sense but like you said, once a bottle is opened,no one can take it back since how can you prove it wasn't tampered with if the seal is broken. But if you had left over Emsam patches those are sealed in their own packet and should be able to be returned, but I doubt that a pharmacy will take back a box of patches once you ave used even one ortwo. Right now I'm on samplesbut the normal box contains 30patches soif you only used 15 out of 30, thats a big cost to be thrown away.
The only way I see you could use up your meds is to know of someone personally who can use the med, but this is not very likely unless you hang out with a big group of depressives. It's possible though and probably makes sense to have a group to do this with but highly unlieky to happen. Too depressing.
Yes, this bothers me that expensive meds are just wasted and if you have insurance you may think, "oh well, I'm not paying for it", but you are in the long run, those costs are passed onto the consumer, in lower wages or higher costs for those with no insurance.
Big waste of money!
Posted by Quintal on November 21, 2006, at 22:47:42
In reply to Re: Compassionate Need Meds Redistribution, posted by stargazer on November 21, 2006, at 22:31:55
All of the tablets in my discarded medicine chest are in the form of blister packs (bar Parnate), which have a tamper proof seal over each tablet. True, if the tablets were put in bottles it would be too risky to pass on. Are most meds typically distributed in bottle form in the US? I wonder why?
I was thinking that people who were very ill and very poor may not be too prissy about having little snippets of tablets cut from blister packs here and there, so long as they get their meds.
>but this is not very likely unless you hang out with a big group of depressives. It's possible though and probably makes sense to have a group to do this with but highly unlikely to happen. Too depressing.
What are we all doing here right now? ;-)
>Yes, this bothers me that expensive meds are just wasted and if you have insurance you may think, "oh well, I'm not paying for it", but you are in the long run, those costs are passed onto the consumer, in lower wages or higher costs for those with no insurance.
I get all my meds free here in the UK and the cost comes directly from the public purse, so I probably have more reason to feel guilty than most.
Q
Posted by yxibow on November 22, 2006, at 0:21:54
In reply to Phase IV results where to read?/ yxibow, posted by stargazer on November 21, 2006, at 18:09:50
> Where can I read about the results of the studies, i.e long term outcomes? I'm curious what data is evaluated and # of patients included. It would be interesting to know how many patients that were in the pre-marketing studies were included in the post-marketing studies, and what was the length of time they were on the med, why did they stop it, etc.
>
> I don't know that I have ever read this type of information, but the drug companies must have to follow the patients one year, 5 years after beginning the drug, in order follow long term results and adverse effects...SGUnder the previous link I mentioned, towards the bottom there is another link highlighted "The postmarketing study information includes the basic information the FDA....." this will pop up a window which will give you an entry form some public information but not everything about a medication, unfortunately. I agree, there could be more FOIA, but that is what they provide
-- Jay
Posted by yxibow on November 22, 2006, at 0:28:10
In reply to Re: Phase IV results where to read?/ yxibow, posted by stargazer on November 21, 2006, at 19:03:06
> Are there other diseases where there is no clinical test for diagnosis and no specific course of treatment?Unfortunately yes, or little diagnosis or little treatment -- just ask or read through the databases at NORD (National Organization of Rare Diseases) http://www.rarediseases.org/ .
The FDA does provide some relief for patients with "orphan drugs", which are defined to help fewer than 200,000 patients. There may be fast-tracking, I believe subsidies may come into play, I don't know how much.
http://www.fda.gov/orphan/oda.htm
I find the whole situation an impossible one, fraught with little hope at times, some random successes and much uncertainty and guesswork. It just gets very tiring to go through the lifecycles of depression and its revolving door...I feel sorry for my pdoc that his options are so plentiful but so unpredictable...SG
Posted by yxibow on November 22, 2006, at 0:34:40
In reply to Re: Compassionate Need Meds Redistribution » stargazer, posted by Quintal on November 21, 2006, at 22:19:17
> Casting my eye over the small pharmacy of unused and discarded tablets, capsules and syrups I possess I began to feel slightly guilty today. There are people all over the world in terrible pain who have are living in poverty and have no access to these meds I have rejected for, sometimes, trivial reasons when I put them into the wider perspective. I wish there were a way I could donate them via a compassionate need agency to people both in the west and in developing countries who are in desperate need. A pharmacological Oxfam of sorts.
> Is anyone aware of such an organisation? If not is there a way of setting one up to collect and distribute them?
>
> There are no doubt laws to prohibit this sort of exchange of prescription drugs, but could the drug companies and pharmacies themselves not offer some sort of service like this where if a drug is unsuccessful you return any surplus to the dispensing pharmacy, fill in a questionnaire and the results are logged and the medication then redistributed?
>
> QYes, there are -- and state laws supercede Federal laws (at least here in the US) in some cases.
For example, this reprint from the NY Times
http://alamaro.home.comcast.net/New_York_Times_May_18_2005.htm
And this retroviral redistribution project for distribution to other countries that do not forbid this.
http://www.thebody.com/cria/fall06/recycling.html?m172o
Just some examples, that yes, there are ways around Federal laws to donate medication but I'm sure that even these organizations must check the quality or age of the medications and make judgment calls on whether to accept or pitch certain drugs especially in this day and age.
-- Jay
Posted by Phillipa on November 22, 2006, at 18:20:25
In reply to Re: Compassionate Need Meds Redistribution » Quintal, posted by yxibow on November 22, 2006, at 0:34:40
Jay well you know there are ways around it as I once told you. Love Phillipa
Posted by yxibow on November 22, 2006, at 18:28:11
In reply to Re: Compassionate Need Meds Redistribution » yxibow, posted by Phillipa on November 22, 2006, at 18:20:25
> Jay well you know there are ways around it as I once told you. Love Phillipa
True, and we won't go into this -- thats why even organizations have to be careful about donations because they want to protect the clients they serve, regardless of the laws where they are because of the non-zero possibility of people who have an illness that gives them a sick sense of humor in tainting.
-- Jay
Posted by Phillipa on November 22, 2006, at 20:47:15
In reply to Re: Compassionate Need Meds Redistribution » Phillipa, posted by yxibow on November 22, 2006, at 18:28:11
And that's horrible that a few can ruin things for all the other good people out there. It saddens me. Love Phillipa
Posted by JerryPharmStudent on November 25, 2006, at 0:53:59
In reply to Do the drug companies know their meds suck??, posted by linkadge on November 19, 2006, at 17:56:16
> I suspect they're happy if they can sell drugs, but do they know that their medications are relatively useless?
>
>
> LinkadgeI so whole heartedly agree. 70-80% of people on a med for depresssion still suffer. These meds suck and all they do is come out with more useless SSRIs.
What will it take to get them to switch the focus from serotonin? All they see is $$$ and all I see is darkness.
Posted by Paulbwell on November 25, 2006, at 4:52:29
In reply to Re: Do the drug companies know their meds suck?? » linkadge, posted by JerryPharmStudent on November 25, 2006, at 0:53:59
> I so whole heartedly agree. 70-80% of people on a med for depresssion still suffer. These meds suck and all they do is come out with more useless SSRIs.
>
> What will it take to get them to switch the focus from serotonin? All they see is $$$ and all I see is darkness.And SEs:
SSRI's
-Prozac-hypomania
-paxil-felling outa it
-Celexa-drug induced suicidal depressionNo more SSRI's for my brain.
I live in New Zealand and Dexedrine is VERY VERY rarely scripted here, however i managed to 'aquire' some 5mg IR tabs (all we have) and it was a damn miracle med. THE BEST MED I'V TAKEN, FAR more satisfactory than Methylphenidate. It treated my restlessness, attentional problems very well too. A Two hour nap felt like 8, and i woke wondering if it was even the same day.
But expect to see more SSRI-type meds-likely.
Cheers
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Dr. Bob is Robert Hsiung, MD,
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