oops, hit "save" instead of "preview"

My (hopefully) last contribution to this thread:

Tayla, you're right; TD is not a common side-effect with antipsychotic drugs, it is relatively rare; if it were common, the drugs would have been banned long ago. TD is not merely disturbing, it destroys lives; especially when it appears in a population the rest of the world doesn't want anything to do with.

My point in replying on this thread was to inform others that there is absolutely no evidence that antipsychotics are efficacious in treating RSD, and their potential side-effects are far too dangerous to justify prescribing them in the hope that they might help.

You mentioned other drugs that are being used off-label to treat RSD, but there is a defined mechanism of action for GABAs (like gabapentin and Lyrica), in the treatment of neuropathic pain; they have been shown to be efficacious; and their adverse consequences are generally well-understood. A mechanism of action for Clonadine isn't known and there is no objective evidence that it is efficacious, but it doesn't appear to have any major adverse events.

Memantine is a different story. It has been discussed here in the past, and those discussions left me feeling uneasy, but I knew nothing about the drug, so I stayed silent. I have since learned enough about the drug to become convinced that it, too, is far too dangerous to prescribe on the mere hope that it might help. I will have much more to say on that when the topic arises again.

Your arguements don't address the issue I presented: That antipsychotics are simply far too dangerous to even consider using against RSD, even if they were shown to be efficacious. My larger point is that off-label use of drugs has been useful, but some doctors have lost any sense of perspective.

I'm sorry that we are poles apart on this issue and I suspect they have more to do with issues of personal freedom, where we would likely find we have much in common I might even advocate further that you in that respect.

For exanple, I believe that people should have the right to end their lives in the presence of loved-ones. WOW. I expect that I will die by my own hand, and I will have to be alone when I do; because the police could arrest anyone present at my death for complicity in murder, and that sucks.

I don't believe, however, that patients should be allowed to take any drug they hope will help them. Prescribing is the physician's job, and we trust them to do it well. For the most part, we simply fill whatever the doc writes, and that qualifies as an informed decision.

Physicians who write scrips for powerfual and dangerous drugs, without telling pts of the risks, on the mere hope that they might help, make discussions like this one necessary. These are not the acts of responsible physicians; they are deliberate violations of the doctor/patient relationship where informed decisions are impossible.

I don't think Imahotep's doc sat down with her and gave her the information she needed, nor do I believe a single one of those Australian docs who (apparently commonly), prescribe antipsychotics did so. Such discussions take time; docs begrudge time.

I don't believe an RSD patient can make an informed decision regarding the use of such dangerous drugs; the pain is so great that we are willing to sacrifice arms and legs to get rid of it; fortunately, neurosurgeons can now tell us why that doesn't work, but you can find a doc willing to cut your leg off if you look hard enough.

Apparently you don't have to look far to find docs willing to risk destroying your brain, your body and your life with drugs, and that's what this is about.

Are we poles apart? Do you really believe RSD patients being offered antipsychotics are provided with all of the information they must have before they can make a truly informed decision?

jo, I'n sure Amber was looking for personal stories from people who used Geodon, and I'm sorry that even one appeared.. Had there been several, I would probably have stopped writing about RSD and begun a campaign (from my bed) to stop physician abuse of off-label drug prescription.

I hope the arguments I presented on this thread explain why I feel that these physicians are guilty of performing human experimentats and criminal malpractice, and hope my words are sufficient to cause anyone to trample innocent people in an attempt to get away from any doc who even introduces the idea.

I don't think there are two sides in this discussion, but I'd be interested in seeing one of these doctors present "their side" in a courtroom (criminal or civil). They should be given this opportunity as soon as practicable.

Imahotep, sugar coat what? You were a victim of what should be an illegal human experiment and of criminal medical malpractice. Thank God you don't appear to have suffered from any of the many adverse effects of this drug; not everyone is (or will be) so fortunate.

The fact that he also prescribed gabapentin does not relieve him of his responsibility for his gross violation of his oath to "First, do no harm".

Amber, you read of one personal experience with Geodon; you heard from one person who feels it might help (but has no idea how); and you read my views: I hope these have given you enough information to decide whether you want to ask that doc to prescribe Geodon for you...Vic

Hi Vicc,

Hopefully this will also be my last post on the subject also.
It certainly seems that you are speaking of a very less than perfect medical system. If this type of careless and indescriminate writing of prescriptions without due and adequate preparation of the patient is an indication of your medical system then I am very sorry. I can't imagine what has happened to you to be so openly suspicious of the motives of all doctors. I can only believe you have had some shocking personal experiences, as I said before, I am very sorry but surely you must not presume your experience is the same for all?
This is what I mean we are poles apart--my experience is totally different to yours.
Never have I been prescribed something that has not had all it's possible effects, both good and bad explained to me at length. It is only then the decision as to whether I am willing to trial it is made----by me.

I belong to a pain management support group arranged by our Pain Management team , we meet once a week. Seven of the 13 usual members have RSD/CRPS. We cover many topics, medications is just one of them and it is here that we get to know what drugs are being used and where I have anecdotal evidence of the efficacy of some antipsychotic drugs----they make some people feel better and they are certainly not behaving as though their brains are fried, they are simply happy to have an improved quality of life.
Perhaps I am extremely lucky, perhaps the many doctors over the years who have helped me are an exception and not the rule but I don't believe that the majority of us have to fear those who are looking after us.
I wish you all the very best Vicc.
Tayla

Administrative edit required

Hi
Just a reminder to all to keep posting within the guidelines here at NeuroTalk which are very clear about making posts that are personally negative toward another (ie flaming)

We do not restrict debating issues and treatments etc freely here, because we fully understand that different members have varying views and experiences on different treatments, drugs, etc. We are not here to make arbitrary judgements on the pros or cons of treatments or people's views on their illness. But we are here to ensure that the discussion remains within the guidelines of NeuroTalk.

We would also again like to encourage members to use the report button to the bottom left of the post when there is a post that does need our immediate attention. We will then discuss it on admin and act according to the guidelines at all times

here is a link to the NT Guidelines
http://neurotalk.psychcentral.com/showthread.php?t=1293

thanks
Cheri

Tayla,

I don't think your first paragraph accurately represents me or my experiences, but whether it does or not, it doesn't address the issues raised in this thread.

In an earlier post you wrote: There is documented and anecdotal evidence that some people do well on them [antipsychotic drugs]; we have seen some of your anecdotal evidence, but I'm more interested in research (or even case studies).

Also, I have been a Marine; been in close-combat situations; worked as an oilfield roughneck, construction worker and truck driver, and suffered several injuries that later infected, and I can't say: Never have I been prescribed something that has not had all it's possible effects, both good and bad explained to me at length. It is only then the decision as to whether I am willing to trial it is made----by me.

Frankly, I wouldn't have a clue as to which antibiotic is most effective against which bacteria. I may well be ...openly suspicious of the motives of all doctors, as you assert, but I trust them to know more about that stuff than me. I trust them to pick the one that works best, not just throw darts at a med-chart.

On the other hand, I would be more than mildly annoyed if one prescribed Geodon for my infection simply because she/he hoped it might help. Lest anyone accuse me of an extreme example, there is no more evidence that Geodon (or any antipsychotic) is more efficacious in treating RSD than it is infection.

If a physician were to prescribe a powerful drug that passes the blood-brain barrier and can cause all of the potential problems and side-effects attributed to Geodon (and other antipsychotics), WITHOUT any evidence at all that it offers promise of helping my RSD, I would tear it up in his/her face and refuse to pay the bill.

If a physician were to prescribe such a drug without warning me of all of the warnings about interactions and side-effects, I would report her/him to the state board of healing arts, and I'm sure action would be taken.

Which leads to my next point: When I spoke of ...careless and indescriminate writing of prescriptions without due and adequate preparation of the patient... (your words, of course, but certainly my sentiments), I was specifically referring to your statement that: Antipsychotics are not an uncommon drug here in Australia for the treatment of RSD-

In Kansas, even involuntary psychiatric patients must be warned of the side-effects of antipsychotic drugs, and have the right to refuse them. They can't be released while they are still a danger to others, so many agree to take them. An imperfect system, but we try.

I assume that your reports of rather widespread prescription of these dangerous drugs in Australia v the U.S. are accurate, since you report:

I belong to a pain management support group arranged by our Pain Management team , we meet once a week. Seven of the 13 usual members have RSD/CRPS. We cover many topics, medications is just one of them and it is here that we get to know what drugs are being used and where I have anecdotal evidence of the efficacy of some antipsychotic drugs----they make some people feel better and they are certainly not behaving as though their brains are fried, they are simply happy to have an improved quality of life.

When you say they make some people feel better and they are certainly not behaving as though their brains are fried, they are simply happy to have an improved quality of life..., I can only assume that the "they" you speak of are one or more than one of the people in your group...how else would you know these things?

On the other hand, of the much larger group at this Forum, only one person spoke of taking Geodon. I suggest this implies a more rational method of practicing medicine in one of these two countriess.

I would have preferred to debate the safety and efficacy of antipsychotics like Geodon, but I can only reply to what you offer. I look forward to seeing some sort of documentation showing evidence of the efficacy of these drugs; we already know enough about their safety...Vic

Vicc,
I had thought that we had agree to end further discussion on this subject but you have asked me a specific question and that is to furnish you with documentation on the efficacy of antipsychotic treatment in RSD.

Vicc, I apologise but I did not intend to insinuate that I had any other than anecdotal evidence from several patients with whom I share a support group and the fact that it would be therefore documented in their case histories that they indeed were finding it beneficial without any troubling side effects.
Of course if it was me that was being prescribed these drugs then I would naturally go to every length to be sure that I had scoured the internet for medical documentation and statistics.
I would also presume this would also apply to the majority of the members of this forum whom I am sure would also seek all the necessary information before making an informed decision regarding taking a medication to which there maybe a side effect (although which drug doesn't have this capability

In reference to what you said in another post, I was wondering by what criteria are we to establish whether we are in fact "victims of an illegal human experiment and of criminal negligence" or simply the patient of a physician who has researched a particular drug sufficiently enough to want to prescribe their patient a medication because it just may help. I believe that whilst it is the responsibilty of the doctor to inform the patient of such, this does not absolve the patient of responsibilty to make certain they are informed.

As you have asked me if I can provide documentation of it's efficacy then I was wondering if you could also provide documentation as to the statistics of catastrophic side effects to antipsychotics in the treatment of RSD.
I am sure if everyone knew how high the probability was then it would make the decision as to whether to try it much easier.

Regards Tayla

Tayla,

I don't see that we've agreed on anything on this thread, but:

I see no reason to continue with whatever this turned out to be: I think we've both presented enough information for anyone reading to make a decision about whether to accept an antipsychotic drug, if offered.

If those who have read all this conclude it would be madness to risk all on a drug that hasn't been shown to be useful, they don't need more information on exactly how devastating these drugs are; and if, after reading all of this, someone wants to try one of them, a few more facts wouldn't change their mind.

Absent a really provocative reply, I'm outta here...

I would hope that everyone fully researches any Rx before they take it.
Before they even fill the prescription.
Do drug info searches and google type searches - don't just read the label/insert.

Drs do not have/take the time to fully inform pts of all side effects, it seems that that task is now up to the pharmacists in most instances now. Basically they just read from the label- from what I've seen myself....

Your life, health and your choice - you need to be your own best advocate in all decisions.

What I noticed with Drs. also they look in the book they have telling the side effects and not all of them are listed. When I took Vioxx the only side effect listed in my PA's book was stomach issues so he put me on prevacid for that.
Look at all of the law suits with Vioxx with heart attacks and strokes. I don't think the pharmaceutical companies are letting anyone know all of the side effects.

My Pharmacist puts a sheet of paper in my new prescriptions about the side effects. That sheet usually lists a lot of them but again not all.

I have researched my meds for years now since I had problems with the Vioxx.

Also, there are a lot of new meds and things being tried for RSD it seems. Moreso then other medical problems. The Drs. and Pharmacist can list all of the side effects but it still leaves us to decide if we want to chance taking the med or not.

Ada