Statin Drugs often lead to muscle pain, damage ...

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Statin Drugs often lead to muscle pain, damage ...

Postby harneyn » Sun Jan 07, 2007 10:45 am

A headline in today's _Ask Dr. Gott_ column in my local paper. ..

At least someone admits it!! He advises discontinuing the statin.
Dr. Peter Gott writes a medical column for United Media in the US..

Other columns:
[url]http://www.suburbanchicagonews.com/couriernews/lifestyles/gott/98692,3_5_GOTT_S1.article
[/url]

Dr. Peter Gott and Statin use...

another:
[url]
[http://www.reporter-times.com/?module=displaystory&story_id=35433&format=html]
[/url]

:twisted:
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statins

Postby vipergg22 » Sun Jan 07, 2007 2:44 pm

There is little doubt that they can do muscle and nerve damage and both can be permanent if you take them too long and do permenant damage . Thank god for the internet otherwise the drug companies would still be saying its not the drugs . We all know better at this point . also thanks to Dr. Graveline for this site and all the very useful and very enlightening information on all the problems these drugs cause .
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Postby Dee » Sun Jan 07, 2007 3:15 pm

This doctor is SO totally NOT ON THE BALL.

He "assumed" this person had RHABDOMYOLYSIS. Many of us have or had all the problems listed by the patient, and many MORE, and have not had Rhabdomyolysis, which is DX by an abnormally high CPK test.

This doctor just regurgitated the information supplied by the drug companies that market statins. He did not address (probably does not even know) numerous other problems caused by statins including nerve damage, myopathy, memory problems....just for starters.

He left the readers with the impression that if they do NOT HAVE rhabdomyolysis, they do not have a problem with STATINS....NOTHING could be further from the truth!

It is my understanding that by depleting Co-Q10 Statins CAN cause damage to heart muscle.


FROM THE ARTICLE:

"The primary consequences of rhabdomyolysis (the muscle damage to which you referred) are muscle pain and weakness. However, as the damage progresses, the protein that is released by the damaged muscles circulates in the blood stream until it is removed by the kidneys and excreted. A massive amount of protein may be more than the kidneys can tolerate. In this situation, which resembles a storm drain in a flood, the kidneys themselves may become blocked, an exceedingly dangerous situation."
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Dr. Gott

Postby harneyn » Sun Jan 07, 2007 6:01 pm

Dee,

I only posted this as he is saying publicly that muscle damage is a known side effect. My experience is that they all deny it or ignore it!

A..
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Postby Dee » Sun Jan 07, 2007 8:06 pm

I don't think doctors have any problem saying statins cause muscle damage. The problem is they do not understand or acknowledge the extent of the problem or the specific different types of damage.

Rhabdomyolosysis from statins is a real "DUH!!" for doctors, it has been associated with statins all along.

Most doctors would tell you all this, while saying that if your CPK test is normal that 1) you do not have rhabdomyolosysis AND 2) therefore your problems are not caused by statins.

In this article the doctor had no test results to base a DX of Rhabdo on and it would be interesting to see what he would have told the patient had a "normal" CPK test result been provided. Those details are missing, unfortunately.

Sorry if I seem a little touchy about the details, but it was exactly this kind of medical advice that kept me on a statin. I have not walked normally for over 5 years, feel like crap, and have confirmed muscle and nerve damage. I am not even out of my 40's yet, and have a cane as my constant companion, and wheelchair if I have to move over about 30 ft. at a time. And I never had Rhabdo according to my test results.
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Postby xrn » Sun Jan 07, 2007 9:39 pm

["Dee"]I don't think doctors have any problem saying statins cause muscle damage. The problem is they do not understand or acknowledge the extent of the problem or the specific different types of damage.

Dee, I think you may have gotten the wrong end of the stick. The doctor in the linked articles has a wide audience drawn from people he has never met and that dictates that he cannot pre-suppose any prior knowledge on the part of the patient. He must, therefore, keep his explanations simple.

I have just discovered (from the link below) after searching on the term...Rhabdomyolyis, that there is considerably more happening than is readily understood by patients (as well as their clinicians) within the cascading and progressive disease process brought about by the condition.

What about the clinical findings of Gabow, where it was noted that only 50% of the studied cases (87) with rhabdomyolysis had any muscle pain?
Furthermore... only 5% of this sample had any muscle swelling. The diagnosis of the condition is just not quite as clear cut as you imply.


When you look at the aetiology of the condition (the way it arises) it is clear that there are a wealth of other triggers, in addition to statins. the page lists 15 other groups of drugs alone in addition to the statins. look at the list of differential diagnoses (all of the possible conditions that could be implicated) and then you should try to work out how quickly the clinician will get to the correct conclusion.

Dee, I don't mean to sound critical but I see this as a problem to be solved on both sides of the divide. I genuinely want to know why I cannot seem to get authoritative information from the medical profession and drug safety committees. I don't want to take any medication for life and I certainly don't want to take a medication that has been implicated in many tragedies. I have read more than enough of them on this forum.

I have not been able to discover why there is a disconnect between the clinicians who treat us and ourselves when we ask them for information. They surely cannot all be in the pay of the evil drug barons, can they? so I would direct your attention to the link I have found and then ask, what can we do, other than bleat to each other about how bad it all is?

I want a sane dialogue with my treating clinician. If there is a case to be made for stating that he is not impartial, then I need the evidence for that. Data is not the plural of anecdote. Now it is possible that it can be, if it was organised in a way that made us seem sane to the medical profession. Is every instance of statin damage or fear of statins, that has appeared in this website, being recorded. Has a book been produced? where should it be sent and so on.

Carping to each other is (to my mind) the least productive thing we can do. We are all preaching to the converted, pretty much, and it serves no purpose. What are we intending to do with our new found knowledge? I am asking this from a different point of view to the personal one that we all attend to first.

Read the linked page and then tell me what your opinion is.

[http://www.emedicine.com/EMERG/topic508.htm]

kind regards,
Jeff
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Reply for Jeff

Postby sos_group_owner » Sun Jan 07, 2007 11:26 pm

Hi Jeff,

Sorry to chime in as you directed your comments to Dee, BUT...

Re: Data is not the plural of anecdote. Now it is possible that it can be, if it was organised in a way that made us seem sane to the medical profession. Is every instance of statin damage or fear of statins, that has appeared in this website, being recorded?

Very good question... the answer is YES... Dr Beatrice Golomb has for the past several years, conducted a 'Statin Effects Study' (funded by NIH) and continues to collect data from (I would hope) people that frequent this site. I encourage all the members of my support group to participate in Dr Golomb's study:
[http://medicine.ucsd.edu/ses/]
And report their adverse effects to FDA's MedWatch:
[http://www.fda.gov/medwatch/]

Dr Paul Phillips of Scripps Mercy Clinical Research Center in San Diego, CA, is also very involved in statin trials and determining how to properly diagnose those with statin damage. His website is:
[http://www.impostertrial.com/physician.htm]
Info for Physicians is much more informative.

One of the main problems I see is that adverse effects reporting in the USA is 'voluntary'. It should be mandatory. More often than not, a patient is switched from one statin to another, before the patient finally gets fed up and says, "No more!"

Re: Carping to each other is (to my mind) the least productive thing we can do. We are all preaching to the converted, pretty much, and it serves no purpose.

I'm sorry, but I don't agree (about carping). I reply to numerous people that were absolutely clueless about the side effects caused by statins, until they post for the first time (on this forum) looking for advice. And venting our frustrations about adverse effects that are still lingering years after stopping our statins can be both informative and therapeutic. Most doctors tell their patients that if statins are causing their pain and/or memory loss (to name just a few), then their pain and/or memory should return after stopping the drug. This is not always the case as many can tell you.

My husband stopped Lipitor over 2 years ago and short term memory loss persists, as well as exercise intolerance.

Fran
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Re: Reply for Jeff

Postby xrn » Mon Jan 08, 2007 6:38 am

Hi Jeff,
Hi Fran,
I am happy to see a reply.

(quote) Very good question... the answer is YES... Dr Beatrice Golomb has for the past several years, conducted a 'Statin Effects Study' (funded by NIH) and continues to collect data from (I would hope) people that frequent this site. I encourage all the members of my support group to participate in Dr Golomb's study:
[http://medicine.ucsd.edu/ses/]
And report their adverse effects to FDA's MedWatch:
[http://www.fda.gov/medwatch/] (unquote)

It is good to know about that study. I have already written an e-mail to that research group, in the hope of supplying them with additional information that may be useful.

(quote) Dr Paul Phillips of Scripps Mercy Clinical Research Center in San Diego, CA, is also very involved in statin trials and determining how to properly diagnose those with statin damage. His website is:
[http://www.impostertrial.com/physician.htm]
Info for Physicians is much more informative. (unquote)

Another medical voice examining the issues is heartening news. That one can name just two clinicians with a known interest in exposing the issues that many of the forum members have raised, is a sad indictment of the state of affairs currently, especially given the number of years statins have been prescribed and the number, type and devasting severity of adverse reactions that have been recorded.

(quote) One of the main problems I see is that adverse effects reporting in the USA is 'voluntary'. It should be mandatory. More often than not, a patient is switched from one statin to another, before the patient finally gets fed up and says, "No more!" (unquote)

There is no question about the system of reporting adverse drug reactions being unevenly applied. When so many of the sub-clinical or barely clinical reactions (that have emerged as attributable to statins) are not even linked to the drugs because of the difficulty in eliminating a differential diagnosis and the likelihood of the more obvious effects, such as memory loss, being ascribed to the aging process... it is no wonder that there is an extra-ordinary amount of under-reporting.

Furthermore, it can be seen that there is 'nothing in it' for a medical practitioner who makes a comprehensive report to an agency such as the FDA. Cynically speaking, there can only be one Nobel prize winner and many busy clinicians will make the minimum required effort (say... by just ticking a few boxes) because that is how their working day is constructed. Rushing through one tedious job after another.

That sort of work often gets pushed to the bottom of a pile, if it is done at all and the medical practitioner will need to spend years documenting the occasional event... before they make the connection for themselves between statins and sick patients.

I don't mean to suggest that all medical doctors are bad or lazy but I worked for a few decades within our health system in the UK and I have much first hand experience of that which I speak about.

(quote) I'm sorry, but I don't agree (about carping). I reply to numerous people that were absolutely clueless about the side effects caused by statins, until they post for the first time (on this forum) looking for advice. (unquote)

I don't find anything wrong with the site being a mutual support mecahnism and giving advice to people who come here to educate themsleves. It is a valuable function that the site serves and long may it continue.

(quote) And venting our frustrations about adverse effects that are still lingering years after stopping our statins can be both informative and therapeutic. (unquote)

I find this proposition more difficult to accept. I can see what you are saying and why you are saying it. I don't quarrel with the rationale about discussions in the group being informative and even therapeutic. I do think that 'venting' can lead to an increase in negative feelings and the line can be a very thin one. The vitriolic responses, I have sometimes seen, do get the person's feelings out into the open and it maybe the start of acknowledging that the climb out of dark days has begun. My note was supposed to be a cautionary one.

(quote) Most doctors tell their patients that if statins are causing their pain and/or memory loss (to name just a few), then their pain and/or memory should return after stopping the drug. This is not always the case as many can tell you.

My husband stopped Lipitor over 2 years ago and short term memory loss persists, as well as exercise intolerance. (quote)

Fran, I accept what you say as a given. The exposure of medical doctors to 'facts' that are not disputed by the vast majority of medical practitioners is one measure of how difficult it is to be an individual voice and still be heard above the noise of the multitude. In the UK, getting on well within the medical profession requires a subscription to the widespread patronage that the most senior members of the medical profession practice (in their turn after they have played the same game for 15 or 20 years) and rocking the boat is not an option.

Independent thought is largely discouraged because of the junior nature of the embryo medical practitioners' skills and knowledge. By the time the fledgeling doctor has earned his or her wings, they have been thoroughly inducted into a system that protects those that play the game. I wont lay the entire blame (for the statin fiasco) at the the feet of an institutionally conservative and possibly indolent medical profession. I do think that it represents a huge mountain for individual patients to climb.

Change happens very slowly in medicine and the current wisdom is that statins are good and any naysayers are crackpots. Now back to the continual carping... I believe that sites that appear to be on the fringes of all that is considered (and held) to be good and true, are going to have a tough time being heard. If the sites exhibit any 'madness' it is far easier for those with a vested interest in denying what appears here daily, to dismiss this site out of hand.

Can't you just hear them... "those people have all got a personal axe to grind" (way to discount the evidence as biased) and a few disgruntled people shouting from the rooftops (way to suggest that every word uttered on the site is just hot air and not underpinned by sound scientific study) is not evidence that we should be considering, with regard to challenging our current wisdom or initiating a sea-change in our current medical practice.

My questions were framed in the knowledge that I (a person who knows my way around medical texts, medical practices and how research is completed) have been spectacularly incompetent when it comes to finding information that ought to be easy to find. I am not a conspiracy theorist and I don't see much mileage in pointing to the visible greed and incompetence by drug companies and medical doctors.

I do see a pathway where we (collectively) make an effort to record and classify all of the information that comes to this site, by way of the participants. Looking at the numbers would produce some preliminary findings in a relatively short time. While it is true that the sample is going to be very definitely skewed (a group who have come to some form of statin mediated harm) there is no comprehensive study (that I can find) that collates all of the statin induced harms in one place.

It would also be possible to analyse the pre-cursors to the harm and get a better handle on what sort of risk factors there are. Most people who frequent this site will state the obvious, that the risk factor is taking statins in the first instance but we could do much better than that. The site is ideally placed to become a respository for the alternative view... that statins are responsible for many iatrongenic effects and a moratorium on statin prescription would be one possible aim... to permit a less biased approach to understanding how the drugs cause widespread and lasting damage to the organism.

The impetus behind medical practitioners' calling for statins to be put in the drinking water, would then be nullified. The crackpot clinicians who believe that statins are the prayer to every possible diseaase known to man... would finally be silenced. I would like to see a unified voice from the people who have suffered from any statin mediated harm. If statistics could speak they would surely say this...

"we know that 1 person in every 10,000 is not a statistically significant number however, it is one family tortured by suffering on an unimagined scale and one family who were bereaved needlessly... to say nothing of the patient"

Fran, I am more than willing to help in way that I can.

regards,
Jeff
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Postby Dee » Mon Jan 08, 2007 8:17 am

Fran and Jeff,

Fran, thanks for jumping in. I was just about to reply to Jeff about the research by Phillips and Golomb.

Jeff, my intention was not to "carp" at the original poster, but to point out the all too familiar attitude with which the doctor responded to the information supplied by the patient. Even if answers must be kept "simple" due to the scope of the audience, this answer was a little "too" simple and presumptive. Assuming that the problems suffered by the patient could only be due to Rhabdo is misleading.

Imagine a reader that has the same symptoms, makes the possible statin connection, calls his doctor concerned with Rhabdo, the doctor orders a blood test, test is normal, patient is told his problems are not statin related, patient continues on statin causing further damage....that was my concern with the response by the doctor. (Again I would direct you to the sources provided by Fran.)

As for etiology...well if you are waiting for a book (to take to your doctor)mapping out the etiologies for all the adverse statin effects and all the other possible causes for such effects, I fear you will be waiting a mighty long time.

For most of us our personal tragic experience is enough. Several months ago, I did a quick count of only 4 statin forums and found over 15,000 postings. For every posting there were many views. For instance one thread with 9 postings had over 2200 views. That tells me that the statin problem is "major".

As I have proposed before, what we need is a colalition pulling together victims, doctors (such as Dr. Graveline, Dr. Phillips, Dr. Golomb) media resources, legal experts, etc. We need ONE CENTRAL PLACE we can join, form committees and start counting heads and organizing an informational campaign. We could also gather donations to fund further independent studies.

When O.J. Simpson was going to publish his "How I Did It" book, it only took a matter of days for public outcry to get it stopped. How was this accomplished? PUBLICITY!

What do we need? PUBLICITY! If just one major program were to expose the extent of the problem, there would be a snowball effect as people start making the connection. Just imagine!

We can whine, complain, rant and rave, and yes "carp" on these forums, but until we organize, we will not accomplish much.
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Postby xrn » Mon Jan 08, 2007 10:58 am

Dee, thank you for this reply.

(quote) Jeff, my intention was not to "carp" at the original poster, but to point out the all too familiar attitude with which the doctor responded to the information supplied by the patient. (unquote)

Ok. first I want to apologise if my tone sounded as if it was a personal attack... it was not but I do see how it might have appeared as if it was. I do think the less positive aspects of a site like this do have an impact... and that impact is, often, to encourage selective hearing and visual defects in those that would prefer not to know.

(quote) Even if answers must be kept "simple" due to the scope of the audience, this answer was a little "too" simple and presumptive. Assuming that the problems suffered by the patient could only be due to Rhabdo is misleading. (unquote)

That assumption was not my own take on the advice tendered. I saw it as an acknowledgement that rhabdomyolysis was a known and significant adverse reaction with statin therapy. Additionally I saw that the doctor was using the term rhabdomyolysis more widely because it could be applied to muscle tissue breakdown (with the concomitant production of toxins) from numerous causes. It was that very point that had led me to look at what the term encompassed and it surely covers way more than statin influenced muscle tissue breakdown.

(quote) Imagine a reader that has the same symptoms, makes the possible statin connection, calls his doctor concerned with Rhabdo, the doctor orders a blood test, test is normal, patient is told his problems are not statin related, patient continues on statin causing further damage....that was my concern with the response by the doctor. (Again I would direct you to the sources provided by Fran.) (unquote)

I do see the point you are raising and it should be addressed. My view is that it is a failure of the sytem to put sufficient information in the way of the patient at prescribing time. The honest and open discussion of risk and benefit is just not a commonly heard dialogue between the expert medical practitioner and the patient when a new treatment is being proposed to address a new medical problem for the patient.

The unknown patient writing for medical advice to anonymous sources... is really just a symptom of how far away from actual patient care, the medical model of healthcare has drifted. Every person is at a different level of knowledge with respect to their personal understanding of their symptoms, the causes and the likely remedies. Your knowledge made you view the advice one way... my knowledge makes me see it another way... the newly diagnosed patient will see it another way.

Blanket approaches to individual problems will not work because they will be inappropriate for the majority. Far better to have an agreed pathway that everyone can follow at their own pace. the medical profession is not that good about having an agreed pathway because it impinges on the clinical competence of individuals. Add to that the issue of patronage that I have alluded to elsewhere and you will see why the profession takes the line of least resistance.

(quote) As for etiology...well if you are waiting for a book (to take to your doctor)mapping out the etiologies for all the adverse statin effects and all the other possible causes for such effects, I fear you will be waiting a mighty long time. (unquote)

I am saddened to learn that. I was not intending to have a recipe book to take to a personal medical practitioner. (on the grounds that if they do not understand what they are doing then I will be unable to teach them anything). My crie de coeur was more to do with the squandering of a valuable resource... in terms of the collective experiences here and bringing them to a wider audience so that change can be initiated.

(quote) For most of us our personal tragic experience is enough. Several months ago, I did a quick count of only 4 statin forums and found over 15,000 postings. For every posting there were many views. For instance one thread with 9 postings had over 2200 views. That tells me that the statin problem is "major". (unquote)

Personal tragedies are devastating... there can only be one way forward at this time and that is not to deal with the tragedy on a personal level exclusively and then stay silent. I do understand what that means in personal terms but instead of taking personal details at registration, what about personal medical history taking (voluntary of course) and maybe a well designed pdf form that is an anonymised tick box document so that it would be amenable to proper analysis?

Effectively one would still only be asking the questions (and the help to complete them) at the time of registration. If you say that is too much of an imposition, I will accept that... it does seem to be missing an opportunity for the little guy to make the big guy sit up and actually take notice.

(quote) As I have proposed before, what we need is a colalition pulling together victims, doctors (such as Dr. Graveline, Dr. Phillips, Dr. Golomb) media resources, legal experts, etc. We need ONE CENTRAL PLACE we can join, form committees and start counting heads and organizing an informational campaign. We could also gather donations to fund further independent studies. (unquote)

I understand. My sense of that is because it does take funding, that is the wrong place to start. The collaborative end of it is important and maybe the good doctors would help people here to set up an ongoing collation of anecdote in a such a way as to be free from taint. In that way it could be more readily accepted by the medical community.

(quote) When O.J. Simpson was going to publish his "How I Did It" book, it only took a matter of days for public outcry to get it stopped. How was this accomplished? PUBLICITY!

What do we need? PUBLICITY! If just one major program were to expose the extent of the problem, there would be a snowball effect as people start making the connection. Just imagine! (unquote)

Yes, I agree with you, Dee, that publicity is important. That does not speak to my point about how the site is seen by the medical orthodoxy. Indeed, your example of the odious OJ Simpson is apposite. Juxtaposing his own exploits, with those of the medical establishment, the pharmaceutical industry and statin therapy is an unfortunate example of unintended hyperbole. That is the precisely the sort of random publicity that will prevent the medical profession from embracing this site as a very valuable resource for patient education.

(quote) We can whine, complain, rant and rave, and yes "carp" on these forums, but until we organize, we will not accomplish much. (unquote)

I agree with you again, Dee. My question is what steps will we now take.

kind regards,
Jeff
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Reply for Jeff & Dee

Postby sos_group_owner » Tue Jan 09, 2007 1:36 am

Hi Jeff & Dee,

I think our current phase at approaching the problem is the 'baby steps' phase. This forum, my support group, Dr's Golomb & Phillips statin studies... it's a start at bringing awareness. Adverse effects from statins is a worldwide problem... a monumental task to organize at present.

Fran

Another example of data collection from "Ask A Patient" I post on my website: [http://www.freewebs.com/stopped_our_statins/questionnaireaskapatient.htm]

Baycol (Cerivastatin Sodium)
~ off the market due to severe side effects causing over 100 deaths
13 ratings as of 8/21/06 ~ Average Rating is 2.2 [not too good!]
* no change since 8/21/06

Crestor (Rosuvastatin)
42 ratings as of 8/21/06 ~ Average Rating is 2.4 [Down from 2.5 four months ago]
Note: Two of the five ratings had: Bad dreams-, shoulder aches, occasional leg cramps, weight gain, elevated liver enzymes. Not sure why anyone would rate something a 5 with all those side effects! Every rating from 4 down to 1 indicate numerous adverse effects.
* now 2.3 with 53 ratings

Lescol XL (Fluvastatin Sodium) [Recently added to database]
9 ratings as of 8/21/06 ~ Average Rating is 2.2 [not very good!]
5 through 1 all indicate adverse effects.
* no change since 8/21/06 & also added Lescol (no ratings yet)

Lipitor (Atorvastatin Calcium)
679 ratings as of 8/21/06 ~ Average Rating is 2.1 [Down from 2.2 two months ago]
Several of the five ratings indicate adverse effects.
* now 2.2 with 723 ratings

Mevacor (Lovastatin)
25 ratings as of 8/21/06 ~ Average Rating is 1.8 [not good at all!]
* still 1.8 with 29 ratings

Pravachol (Pravastatin Sodium)
76 ratings as of 8/21/06 ~ Average Rating is 2.6 [So so Rating!]
* still 2.6 with 84 ratings

Zocor (Simvastatin)
297 ratings as of 8/21/06 ~ Average Rating is 2.0 [not very good!]
Again, several of the five ratings indicate adverse effects.
* still 2.0 with 332 ratings

Ratings updated: 12/30/06
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Postby Dee » Tue Jan 09, 2007 3:26 am

Fran,
Thanks for the stats. I do visit the sites you mention and appreciate all the information available.

I agree that it would be a huge task. That leaves those of us with statin adverse effects at a disadvantage. For instance, as bad as I would like to get the ball rolling, my stamina and health issues FROM the statins are the very thing that prevents me from taking the steps to accomplish what I proposed. That is why I suggested committees, "many hands make little work". As far as funding, I wonder about a government grant?

(Fran, I have a beginning list of people I think would be good members / resources for this "organization", not sure if you already "know" them, but if it is ever decided to start something up, I will email you my ideas.)

Jeff,
Your points are well taken. I wish I had the energy to address each one, but again, my health is a mess due to the statin I took. I do not have the "steam" to do so.

One thing I would like to say is that what I proposed has nothing to do with providing a place to convince the medical establishment of anything. It would be a place to expose the problem to the public, and to gain some form of justice for those with ruined lives. It is certainly not to cater to doctors that have met our complaints with ignorance/arrogance. If they choose to use the site to help their patients...GREAT. If they don't, oh well. The site would not be for doctors, it would be to help those that have been devastated by these drugs, their families, and to PREVENT this happening to others.

It would start documenting the real cost of these drugs in terms of the level to which they are prescribed and paid for by insurance companies and government programs. Add to that the cost of medications to treat the adverse effects and addition of victims to the disability programs....the real but hidden cost of these drugs is obscene and totally unacceptable.

There would be many other issues involved including the pathetic oversight of the FDA, a victims compensation fund (sans litigation) that should be in place for all drugs, etc. My "wish list" for such an organization is so big I cannot even remember all of it right now.

Dear Fran and Dear Jeff, I am totally out of energy. I am going back to bed and hopefully will sleep this time around. Please keep the discussion going...Dee
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Postby xrn » Tue Jan 09, 2007 10:06 am

Dee... (quote)

Jeff,
Your points are well taken. I wish I had the energy to address each one, but again, my health is a mess due to the statin I took. I do not have the "steam" to do so. (unquote)

Dee,
I am sorry to learn that you not feeling well right now. My scribbles can wait.

(quote...) One thing I would like to say is that what I proposed has nothing to do with providing a place to convince the medical establishment of anything. It would be a place to expose the problem to the public, and to gain some form of justice for those with ruined lives. (...unquote)

Yes, I do understand where you are coming from, Dee. The public opinion has to be far spoken from much larger group, if it is to gain any traction and goes onto become influential in securing justice for the people who have been harmed,... in my opinion.

(quote...) It is certainly not to cater to doctors that have met our complaints with ignorance/arrogance. If they choose to use the site to help their patients...GREAT. If they don't, oh well. The site would not be for doctors, it would be to help those that have been devastated by these drugs, their families, and to PREVENT this happening to others. (...unquote)

I hear you, Dee. Nevertheless, I disagree with you. I think that I must have expressed myself badly. I was not talking about the site becoming a medically approved site (pardon my inept English usage here). I am far more interested in how the medical profession can be cajoled and guided into changing its entrenched and wrongheaded opinions.

(quote...) It would start documenting the real cost of these drugs in terms of the level to which they are prescribed and paid for by insurance companies and government programs. Add to that the cost of medications to treat the adverse effects and addition of victims to the disability programs....the real but hidden cost of these drugs is obscene and totally unacceptable. (unquote) I am in agreement with you hesr (...unquote)

For me, the obscenity is that money is being put ahead of human life and valued, nay worshipped, much more highly.

(quote...) There would be many other issues involved including the pathetic oversight of the FDA, a victims compensation fund (sans litigation) that should be in place for all drugs, etc. My "wish list" for such an organization is so big I cannot even remember all of it right now. (...unquote)

Mounting a challenge to the pharmaceutical industry's monopoly and power is not for people who are easily pushed around. It is no suprise that absolute power has created a pharmaceutical industry that is absolutely corrupt. The FDA/MHRA/CSM are largely helpless when it comes to standing up to the excesses of the drug industry.

No right-thinking person would argue against the supply of medications that are perceived as helpful to the people at large. The price, if decision making is left in the hands of the pharmaceutical industry, is damaged lives and we should not forget the billions of dollars either. The hallmark of a humanitarian enterprise is that it does not demand its pound of flesh. The pedestal that the 'wonderful' drug companies occupy is well beyond that which is desrved for their collective contribution to the health of humans.

(quote...) Dear Fran and Dear Jeff, I am totally out of energy. I am going back to bed and hopefully will sleep this time around. Please keep the discussion going...Dee (...unquote)

Rest well, Dee.

Jeff
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Reply for Dee

Postby sos_group_owner » Tue Jan 09, 2007 4:19 pm

Hi Dee,

Re: (Fran, I have a beginning list of people I think would be good members / resources for this "organization", not sure if you already "know" them, but if it is ever decided to start something up, I will email you my ideas.)

Just click on the 'email' button to send the list to me.

Fran
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Rhabdomyolysis and statins:

Postby catamaran » Tue Jan 16, 2007 2:38 pm

It is my understanding from reading various data that all statin drugs cause rhabdomyolysis to some extent, some more severe than others.

My experience with 40mg of Zocor for ten years (shame on me) exhibited an inability to gain muscle mass despite fairly intense weight-training sessions three times a week.

Upon learning of the atherosclerosis/heart disease/cholesterol/statin folly I quit statins altogether. I have continued to work out and I have added a significant amount of muscle mass.....difficult under any circumstances for a 73-year-old.

A most disturbing development from the long-time use of the drug is the very good possibility that my lung capacity has been compromised by interstitial pulmonary fibrosis, one of the many less promulgated side effects of the use of statins. Over the course of the ten-year therapy on Zocor I noticed a steady, but slow decrease in my stamina during a run. What had been an easy, comfortable 13 minute 2-mile run has become a struggle at 20 minutes for the same distance. I can't attribute all the loss to the additional ten years of age. :?
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Postby Biologist » Tue Jan 16, 2007 3:36 pm

"My experience with 40mg of Zocor for
ten years (shame on me) exhibited an
inability to gain muscle mass despite
fairly intense weight-training sessions
three times a week."
--catamaran

Same here, catamaran. I had been very unimpressed with my progress over a couple of years with my own weightlifting which I did a couple times a week after running a couple of miles on an elliptical machine. In fact, it was right after such a "dual" workout early last November that I "crashed" with numerous statin symptoms. It is as if I had reached some threshold for the first time with statin build up. (I was up to 40 mg of Zocor for the preceeding several months.)

On the "statin buildup" idea, that is something that I will be exploring a bit in the future. A theory of mine has to do with the drug's potential "half life" -- I suspect that is an applicable term regarding statins. It could be that users of too high a dose simply accumulate active unmetabolized molecules of the drug over time such that their levels eventually become a major issue. That would explain my case.

"I have continued to work out and I
have added a significant amount of
muscle mass.....difficult under any
circumstances for a 73-year-old."
-- catamaran

Good to hear. BTW, your original 2 mile time did not sound bad to me. That would have been one of my better times on the machine 10 weeks ago. I'm 49.

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Rhabdomyolysis and statins:

Postby catamaran » Tue Jan 16, 2007 4:06 pm

Biologist,

I have great concern about the procedures used by the drug companies to qualify their products for FDA approval. Up until fairly recently I have not seen any long-term tests designed to determine the safety of statin drugs, and the tests that are out there have all been run by the drug companies pushing their products. The negative factors that arise out of the tests are always minimized and positive factors are expressed in relative percentages of improvement which is misleading to say the least.

The cumulative effect of statins in one's system I suppose is a legimate consideration, but I have neither seen nor heard anything to support the hypothesis....sufficient to say that statins are dangerous things that have, in my opinion, almost no efficacy in the treatment of the disease they are purported to "prevent" and are best avoided by everyone.

SpaceDoc's treatise on statins and their side-effects should be enough to scare the daylights out of anyone contemplating their use. :o
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Postby Biologist » Tue Jan 16, 2007 5:40 pm

catamaran,

While you have probably already seen it, I got this link from Fran's site, I believe.

[http://www.pbs.org/wgbh/pages/frontline/shows/prescription/view/]

The second and the sixth video clips (if I remember right) pretty much tell the story about the FDA.

Bought and Paid For by Big Pharma.

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Rhabdomyolysis and statins:

Postby catamaran » Tue Jan 16, 2007 8:27 pm

Biologist,

I had not seen those videos, but I am familiar with the content.

Producing and prescribing statins, as I see it, approaches criminal negligence since the cholesterol/heart disease hypothesis has been almost completely discredited, yet the drug industry continues to market those drugs that have nearly zero efficacy and many dangerous side-effects and doctors continue to prescribe them.

At the same time the primary underlying factor relating to the cause of heart disease is, through ignorance and prejudice, largely discounted by the medical community....that factor according to Dr. Thomas Levy is chronic sub-clinical scurvy, simply put, vitamin C deficiency. The mechanism created by the chronic deficiency that leads to atherosclerotic lesions and the concomitant circulatory disorders such as PAD and CVD is well described by Dr. Levy in terms the layman can comprehend...very interesting stuff indeed.
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Postby Biologist » Wed Jan 17, 2007 12:02 pm

catamaran,

I agree with your assessment of the situation. If there could be any doubt about that, read my recent thread titled "Making an Impact?"

BTW, my musings about a "statin overload" due to an accumlation over time, after a fairly recent increased dosage, is only a suggested explaination for my sudden acute statin symptoms. For me, there was a "tipping point" that day, which is not to say that I was not already suffering from some low-grade symptoms for months, if not years, and had not recognize it. My energy levels had been down for months and my left foot was occationally tingling -- two classic early warning signs (I now know).

I have studied on the Vitamin C theory recently and have increased my dosage. I will read up on Dr. Levy before long. Thanks for pointing him out.

Looks like someone (besides myself) agrees with your assertion of "criminality":

[http://counterpunch.org/pringle01102007.html]

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