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Peregrinus

250 Posts

Posted - 01/15/2013 :  11:22:43  Show Profile  Reply with Quote
Chickenbone:
Thank you for your post. The US has its head in the sand when it comes to certain subjects particularly the FDA and the industry it is supposed to regulate.
I took a course on regulatory affairs that was taught by an FDA enforcement officer. The story behind the creation of the FDA is somewhat interesting. Around 1915 (I’m not sure of the date) a batch of some home remedy was accidently contaminated resulting in the deaths of about 20 people mostly children. Congress reacted and created the FDA. How many people have since died after taking FDA approved medications? How many people die each year from vitamins and supplements? The government fails in every enterprise it undertakes.
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catmac

United Kingdom
57 Posts

Posted - 01/15/2013 :  11:29:33  Show Profile  Reply with Quote
As you can tell, I'm not in a good place. Have any of you come off anti-Ds after long-term use?

Of course I would only come off under Dr. supervision but I doubt my psychiatrist will even work with me. I feel like psychiatrists hook you into the drugs - coming off of them can be such a nightmare - and before you know it you are basically hooked for life. Money for them, money for the drug companies.

Please don't tell me anything to freak me out. I'm already in that state. I just need some solid advice/opinions. I fear coming off of them - - -
[/quote]

Hi Jennypeanut (love that name)

Just a short reply from me. I agree completely with Dr Alexanders reply. I came off my meds over 5 months, reducing bit by bit roughly every two weeks. When I had reduced down to the minimum dose I found it harder to let go and therefore ended up staying on the last tablet for six weeks before I finally managed to stop the med completely.(I think the last part was psychological, I really struggled to let the last tablet go!!) I would recommend this to anyone. I have had no side effects and no increase in pain since.

My doctor had tried to get me to come off within 2-3 weeks but I wasnt comfortable with this. I felt my body had got used to the meds over time and so I was going to be 'kind' to myself and let it get used to losing the meds also over time.

Hope this helps
Catmac
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pspa123

672 Posts

Posted - 01/15/2013 :  11:33:05  Show Profile  Reply with Quote
Catmac congratulations. I did this myself years ago from benzos and it took me even longer than that. The key is not to be wedded to a timetable but to keep moving in the right direction.
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chickenbone

Panama
398 Posts

Posted - 01/15/2013 :  11:59:11  Show Profile  Reply with Quote
OOPS!! Sorry, I meant to write FDA. My hobby is reading about Economics, so the FDIC was probably on my mind. Sorry
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tennis tom

USA
4749 Posts

Posted - 01/15/2013 :  12:19:44  Show Profile  Reply with Quote
quote:
Originally posted by Peregrinus


...How many people have since died after taking FDA approved medications? How many people die each year from vitamins and supplements? The government fails in every enterprise it undertakes.



How many would die without the FDA?--only one way to find out--and the way things are going we may soon be finding out.
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pspa123

672 Posts

Posted - 01/15/2013 :  12:50:05  Show Profile  Reply with Quote
As someone who has reviewed many transcripts of FDA hearings on new drug and device applications, and has been involved in cases arising out of recalls, I don't think it's nearly so simple as to say they are bad at their job. Many drugs and devices get rejected, and who knows what would have happened if some of them went on the market. In other cases, sure it's easy to say in hindsight x y or z should not have been approved, but sometimes that story only emerges after post-marketing experience. And drug companies are notorious for skewing data and it's not always easy to unpack that. Could the FDA do a better job? Sure, no question. But it's a complex story.
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Peregrinus

250 Posts

Posted - 01/15/2013 :  21:59:00  Show Profile  Reply with Quote
PSPA123:
What is the real role of the FDA? If they approve a drug or a device and someone dies as a result is the patient’s family compensated? Do they prevent dangerous drugs, devices and treatments from entering the market place? Does the FDA allow the patient to select the drug or treatment that they think is best for them? The FDA does not protect the patient. In order to obtain compensation for a harmful drug or device one must sue the manufacturer. This would still be the case if there was no FDA with one big difference that being you would also be able to sue the physician who would no longer be protected by the curtain of FDA approval. The FDA’s main role is to protect physicians. Once a drug is approved any physician can prescribe it to anyone with impunity and reap the financial benefits attending that privilege. Without the FDA the medical community would be forced to evaluate the safety and efficacy of medical treatments and it would have to bear the responsibility for incorrect evaluations. Without the FDA (which oversteps the constitutional authority of the Federal Government) individuals would be free to make use of any medical treatment they wish just as they now have the right to eat any kind of diet they wish.
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Dr James Alexander

Australia
127 Posts

Posted - 01/16/2013 :  00:53:38  Show Profile  Reply with Quote
As i've suggested earlier, there is no such thing as a typical response to any drug which effects the CNS. What 'works' for one person (or at least causes no apparent harm) can be 'disastrous' for another person- as such, there is little value in recommending any drug based on one's own experience- we all differ. The study of these differences is a new science called pharmacogenetics (aka pharmacogenomics). It is a study of the role of specific liver enzymes in the metabolic process of your body breaking down the chemicals of a drug and expelling them via your urine. How well any individual metabolizes any particular drug or not depends upon their genetic 'loading' of specific liver enzymes, the 'CYPs'. We all differ in regards to our genetic loading of these enzymes, and as such, we all differ in terms of how quickly/slowly our body metabolizes and expels the chemicals. Those who experience adverse side effects are likely to be those with the fewest of these liver enzymes; those who experience no side effects most likely have an adequate amount, or an abundance. Research suggests that this genetic component can explain around 75% of the differences in how people respond to drugs. The other remaining 25% may be due to general health status, exposure to environmental toxins, etc. You can read more about pharmacogenetics on my website under FAQ 9under the 'MORE' button (www.drjamesalexander-psychologist.com). I have no idea about the availability of genetic tests for the CYP's in America or other parts of the world- the test is available in Australia and here costs around $290. From such a test, a person can establish (with around 75% degree of confidence) whether their drug is/isnt causing adverse side effects; which drugs their system is likely to tolerate, and which to avoid due to low ability to metabolise them.

You can see that it is rarely an issue of whether this or that is a 'good' or 'bad' drug, as it really depends on your unique ability to metabolise it. What works well for one person may nearly destroy another, and vice-versa. The predictions are that within 10 years we will all have undergone the genetic tests, and before writing out a script for anything, a physician will first to check your ability to cope with it- individually tailored medicine. Sounds like an advance to me.

James
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pspa123

672 Posts

Posted - 01/16/2013 :  05:11:22  Show Profile  Reply with Quote
quote:
Originally posted by Peregrinus

PSPA123:
What is the real role of the FDA? If they approve a drug or a device and someone dies as a result is the patient’s family compensated? Do they prevent dangerous drugs, devices and treatments from entering the market place? Does the FDA allow the patient to select the drug or treatment that they think is best for them? The FDA does not protect the patient. In order to obtain compensation for a harmful drug or device one must sue the manufacturer. This would still be the case if there was no FDA with one big difference that being you would also be able to sue the physician who would no longer be protected by the curtain of FDA approval. The FDA’s main role is to protect physicians. Once a drug is approved any physician can prescribe it to anyone with impunity and reap the financial benefits attending that privilege. Without the FDA the medical community would be forced to evaluate the safety and efficacy of medical treatments and it would have to bear the responsibility for incorrect evaluations. Without the FDA (which oversteps the constitutional authority of the Federal Government) individuals would be free to make use of any medical treatment they wish just as they now have the right to eat any kind of diet they wish.




Yes, they do prevent dangerous drugs and devices from entering the market, and they take them off the market when post-marketing experiences point to lack of safety. I have seen a number of examples of this is my own personal experience. Knowing what I know about drug companies and doctors, I would not want an unregulated world. If anything I would like to see more scrutinty of drugs. And what do you mean exactly by the "medical community" would have to evaluate drugs? Suppose a committee were formed, and approved drug X, why wouldn't that be just as much a defense to a physician that he or she followed generally accepted prescribing principles and therefore wasn't negligent? My guess is that any committee of the AMA or whomever would start to look a lot like the FDA. And it seems to me you are being inconsistent here -- on the one hand you are complaining there are too many dangerous drugs out there and the FDA isn't doing its job, on the other hand you want an unregulated world where people can take any drug they want? Perhaps I am missing something here.

Edited by - pspa123 on 01/16/2013 06:37:28
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tennis tom

USA
4749 Posts

Posted - 01/16/2013 :  06:50:02  Show Profile  Reply with Quote
quote:
Originally posted by Dr James Alexander

As i've suggested earlier, there is no such thing as a typical response to any drug which effects the CNS. What 'works' for one person (or at least causes no apparent harm) can be 'disastrous' for another person- as such, there is little value in recommending any drug based on one's own experience- we all differ. The study of these differences is a new science called pharmacogenetics (aka pharmacogenomics).


...You can see that it is rarely an issue of whether this or that is a 'good' or 'bad' drug, as it really depends on your unique ability to metabolise it. What works well for one person may nearly destroy another, and vice-versa.

James



Agree, I was prescribed Lexies by a shrink for TMS/depression and sustained a panic attack reaction taking me to the ER in the middle of the night fearing a heart-attack. As soon as the kindly ER doc reassured me it was benign and I wasn't going to die, I calmed right down. He explained panic attacks, along with bleeds from over-NSAID'ing, was a major cause for ER visits. But, some people swear by Lexies and they work for them. I think the issue was a mis-dx by the shrink thinking I needed pepping up when I needed settling down instead. I came off the Lexies cold-turkey and found the shrink's talk therapy so unpleasant, I got well real fast to end it. Your results may vary.
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pspa123

672 Posts

Posted - 01/16/2013 :  06:55:18  Show Profile  Reply with Quote
Initial increase in agitation is a pretty common reaction to starting an SSRI such as Lexapro. I had a similar experience to TTs after two days of too high a starting dose of Zoloft.
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bryan3000

USA
513 Posts

Posted - 01/16/2013 :  13:50:08  Show Profile  Reply with Quote
I saw Dr. Shipko for a long time.

He helped me avoid the pitfall of AD's, and like Brenner he is very extreme in his view on their use.
Overall, I agree with his mindset which says that people go to a doctor with anxiety... end up on a drug that gives them more symptoms... try to come off... and have reactions which they are told is just the original problem... and stuck on another drug....

and the drug-loop has begun.


He's a brilliant and highly, highly opinionated guy. Never a dull moment when I met with him. He's not really a therapist so much as a general anxiety/medication coach.
He served a purpose for me and had some great input. But, I needed a more behavioral approach, ultimately. (As I believe most of us do.)

My only complaint with him is that he accurately identified that the small amount of Xanax I was taking was causing me untold health problems, but then downplayed what happened after I quit. He works with getting people on and off the drug, so he has a strong opinion. That opinion seems to downplay the notion of any sort of extended withdrawal suffering, which frankly is quite easy to verify in a number of ways.

He's a good man, though. Just like many who write and put their opinion out... highly entrenched in his beliefs.

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jennypeanut

103 Posts

Posted - 01/17/2013 :  13:41:12  Show Profile  Reply with Quote
Dr. J: I think I'm one of those you spoke of in your first response in this post who lives in terror of coming off the drug (and is thus married to the drug for life) because of my own experience with coming off Celexa 3 years ago. It was an accidental cold-turkey experience that happened when I forgot to take my pill for 9 days in a row because my child was very ill and I was completely thrown off my schedule. I suffered TREMENDOUSLY and thought I was dying: blurry vision, dizziness, tunnel vision, ringing in the ears. All of this made me think I had a brain tumor and I already have health anxiety and thus I became completely anxiety ridden. Once the problem was "fixed" by taking my medicine again, the anxiety and lesser physical symptoms lingered for months. 5 months after that I had either major physical symptoms of anxiety or perhaps (?) leftover withdrawals. I tried 4 different antidepressants over the last 3 years + a benzo and nothing (until I found out about TMS) helped me. The anxiety took over my life and I eventually became a victim of physical pain. And all of it started with that initial experience of getting off my meds cold turkey. So this is why I've mostly been afraid to come off. But now that I actually feel like I have more control of my thoughts - mostly because what I've learned here and through reading about TMS - I think and believe I will be okay living life without this. And I wonder how much of my anxiety over the past 3 years was a result of whichever medication I was on at the time. As my husband noted, "they aren't working, so why not come off?" The worst anxiety I've ever experienced has been while on some of the "best" medication.

So... Tapering - my Dr. has me tapering 15 mg. per 2-3 weeks but I'm wondering if I actually should do 10 mg. Since Cymbalta only comes in 30mg tablets I'm having to count tiny little beads and I feel like a drug dealer.

Also, Dr. J, just wanted you to know a bit about my psychiatrist - I've only seen her twice as I ditched the old guy who I felt was not honest nor did he seem to have much integrity - But she is wonderful. When I told her I wanted to get off the meds she said "Great! Let's work up a plan." She said a lot of what she does is help people get off meds. He big focus is exercise and diet and vitamins and she tailored a plan for me. She spent over an hour with me, longer than the 15 minutes I've spent with other pyschiatrists. So - I feel confident in her.

Edited by - jennypeanut on 01/17/2013 14:06:21
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pspa123

672 Posts

Posted - 01/17/2013 :  13:46:38  Show Profile  Reply with Quote
There are lots of people with anxiety who are not helped by meds. I was one of them. I don't think your cold turkey withdrawal says anything at all about how a prudent taper would go -- it's apples to oranges. You can always slow down a taper if you need to, the direction is the important thing. Best wishes with it.
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Dr James Alexander

Australia
127 Posts

Posted - 01/17/2013 :  16:16:01  Show Profile  Reply with Quote
Jennypeanut. Sounds like you've lucked it for the best type of help you can get- a clinician who actually listens to you and is happy to work with you rather than against your health goals (or perhaps rather than luck, you sought her out from a recommendation?). Unfortunately, psychiatry seems to have been for the most part hijacked by the pharmaceutical industry. There are some notable exceptions to this, so i think its worth publicising psychiatrists who are more interested in their patient's well-being than in their drug company bonus esp those who are reluctant to put people on drugs and/or are willing to help them get off drugs)- others may choose to access their help as well if they know who the good ones are.

My suggestion to anyone considering going on to psych drugs is to firstly consider obtaining a genetic test to see if their system can actually cope with any particular drug. The genetic test (see 'pharmacogenetics' under FAQ of www.drjamesalexander-psychologist.com) will give you a prediction (which is 75% accurate) as to whether you are genetically prone to get better, worse, or no effect from a psych drug. If any psychiatrist, physician or psychologist is urging you to go on a psych drug, ask them how do they know that it will be safe for you, given your individual genetic pre-disposition and ability to metabolise it? Without a genetic test, its like Russian Roulette. Some health professionals seem to be very cavalier with other people's health.

James
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bryan3000

USA
513 Posts

Posted - 01/17/2013 :  16:44:41  Show Profile  Reply with Quote
Dr. James,

I think this is long overdue, and I was also urged at the first sign of my anxiety disorder to go on a psych drug. I was put on Prestiq and was suicidal by the second day.
Obviously, I got off... never tried another again. (Of course, I didn't manage to avoid the Xanax, which was like a slow trip to hell and back, even at low doses.)

How much first hand experience have you had with prescribing using this method? Is the 75% effective figure yours, something published or both?

Purely curious. My days of medication in that sense are over.

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bryan3000

USA
513 Posts

Posted - 01/17/2013 :  23:48:41  Show Profile  Reply with Quote
Late notice, but Dr. Breggin is on a syndicated show called Coast to Coast right now. (Sort of a fringe topics show to say the least.)
It's on our local AM here in Los Angeles.

Just started if anyone wants to listen. (10:45 pm pacific)
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lmcox

24 Posts

Posted - 01/18/2013 :  14:29:01  Show Profile  Reply with Quote
I have tried almost every anti-D out there, and while I think they do work in limited ways to keep obsessive thoughts under control, I also want to share a great resource with you that a smart (!) pDoc shared with me last year.

So, as it turns out, not everyone can metabolize every type of anti-D, so some of them, your body is just going to reject. If you have TMS, this would most definitely exacerbate your anxiety/ health issues. Just a quick look at www.askapatient.com will confirm that many of the people on there have TMS, then take high doses of antidepressants, which make them so much worse.

My doctor mentioned this test: http://www.genomas.net/phyziotype-hilomet.php. I got the test, and I turned out to lack the specific liver enzymes necessary to metabolize almost all of the anti-Ds. This was actually very helpful for me to know, because it made my recovery more MY responsibility, and it made me stop wishing and hoping for some "magic bullet" that would stop my symptoms.

I think you have to go to Connecticut to get the test, but if you've been on a large number of medications and are wondering if you'll ever find one that works, it's definitely worth getting. Just in the past year, they've expanded the test to include everything from antihistamines to all kinds of pain meds, so it can actually improve your quality of life on many fronts (not just psychiatric).

Hope this helps. Let me know if you'd like more information about the test (I have a contact at the company who is great). You do need a doctor to order it for you.

jennypeanut- get the test! If Cymbalta is making you feel "drugged up," it could be that your liver is not metabolizing it correctly, and that a switch would help you heal your TMS (and get off the drugs for good).
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chickenbone

Panama
398 Posts

Posted - 01/18/2013 :  15:51:04  Show Profile  Reply with Quote
Yes, Imcox,
Any more info you can provide would be greatly appreciated. I would like to have this test done when I visit the US this summer. Can I get it done in upstate NY or in Miami?

Thanks for the information.
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lmcox

24 Posts

Posted - 01/18/2013 :  16:27:27  Show Profile  Reply with Quote
I think you have to have the test performed at a lab in Connecticut, but it's actually really easy to get to CT from NY (a short train ride). You can have your doctor fill out the paperwork and "prescribe" the test, then they work with the lab to get the results. Hope that makes sense.

Here is the main website for the company that does the testing: http://www.genomas.net/contact.php

Here is the contact info (ask for Teresa): http://www.genomas.net/contact.php

Hope it helps!

Lori (LMCox)
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