Hello... I am new here

[xrn]

Hi there. I found this site while attempting to discover what I needed to know because my family practitioner has just prescribed a statin (Zocor) for me.

The medical profession in the UK are not usually receptive to questions from their patients about any planned courses of treatment that the family practitioner wants to commence. I have not yet taken any of the prescribed medication and tried to get the Heart UK organisation to discuss the matter with me. It was hard to find anyone who would say that statins were even potentially harmful to people.

I gave up in disgust and have been carrying out my own researches. After my research into statin prescriptions, it would not be overstating the case to say that I will never consider taking statin medication. The litany of complaints ought to provoke the pharmaceutical companies into examining what is happening on the ground.

The peer-reviewed research (from a multitude of reputable sources) certainly suggests to me that statins, as a group of medicines, ought to be on trial for the harm caused. At the very least, there ought to be a global moratorium on all statin prescribing. I would like to see an impartial and completely independent investigation and assessment made... of the supposed benefits to people who have been prescribed the medicaton.

I have just taken some steps to inform the relevant people in the UK of my concerns and will keep this forum posted. The latest phase 3 Pfizer drug trial (using the compound of atorvastatin/torcetrapib) was abandoned on December 2nd 2006 because of the independent DSMB, identifying that there was an unexpected increase in the mortality (death) rate of people taking the compound, when compared with people taking atorvastatin on its own. A link to the FDA announcement follows...

[http://www.fda.gov/bbs/topics/NEWS/2006/NEW01514.html]

cheers!
xrn

[NurseJudy]

Dear Freind in the UK, We have a program here in the USA to combat street drugs. The kids are taught to, "Just say NO!" I was speaking to a pharmaceutical drug rep the other day about some of the terrible side effects from statins. She asked me, "Whose responsablity is it to decide what drugs to take?" I said, "The patient's" She said, "Thank you." In the US, it is against our rights to be forced to take a drug. Hope that helps! God bless, Judy

[Dee]

Judy,
I agree that patients should ultimately decide whether to take a drug or not. However, we need unbiased, reliable info in order to make such decisions. Statins were pushed on many of us as being "safer than aspirin, with only very rare side effects."

It is incredible that statins are escaping intense scrutiny given all the reports of serious damage they are doing.

[Ray Holder]

Dear xrn

I wish you good luck with your information campaign!! However, I must tell you that over the last 4 years, I have written to many people in high places, with little or no reaction. From the PM, 2 Health secretaries, NICE, MHRA, various professors and consultants to placing letters on the BMJ web edition, with very little result.

I believe that the medical and research bodies are in a cleft stick, the financial figures bear it out, the great majority of research money spent in UK comes from Big Pharma, who decide which subjects shall receive funding. It follows that the big university hospital research personnel are virtually on the Pharma payroll and any research into unpalatable subjects is frowned upon. That probably carries over to research into other matters, where the outcome might upset the principal benefactor. All the top brass of such departments could put their department and even their personal position at stake by falling out of line.

NICE committees discussing such drugs as statins are made up mainly of such leading persons, with less than unbiassed input to the proceedings, only certain members of the committee being allowed a vote. It really is a scandalous situation, but who is big enough to take it on? I am coming round to the idea that some such organisation as the National Audit office must be brought in, politicians only make political capital out of "Our great success in heart health" and would be defensive.

I have been putting some education for doctors in my letters on the BMJ website, whose accent is on evidence based, peer reviewed medicine, but is that evidence always the whole truth and nothing but the truth. There is also the effect of "economy with the truth", and are reviewing peers any less under Big Pharma's influence than report authors? There is a whole can of worms waiting to be opened up.

Keep battling on, you can give me a ring to compare notes if you wish.

Ray

[xrn]

You are making an interesting point, NurseJudy and I wish it were that simple and clear cut. Of course, saying NO is the prerogative of any patient but it carries the implication that saying NO is an informed choice. Saying NO just to be difficult, or even to exercise some mysterious human right to determine one's own course through life is all well and good. OTOH if the decision to refuse or partake of a certain medication is made from a position of ignorance, the patient is very likely to be the only loser.

When you use the phrase "to be forced to take a drug" I am sure that I can say that unless one is a patient who has been detained under a section of the mental health act in the UK, patients cannot be forced to do anything against their personal wishes. How and ever... that does not absolve the health care professionals from assisting the patient to make an informed consent. So their particular dilemma revolves around how much should they tell to the patient.

The patient's needs are often subjugated because of time constraints at the family practitioner's practice. Ask any UK resident how they get an appointment to see a general practitioner, with whom the patient MUST be registered, in the face of the practice not accepting telephone calls before 10am, not giving out appointments for the same day after 10am (unless it is an emergency and that decision is usually made by an unqualified receptionist who is trying to act as a gatekeeper and can be seen and heard discouraging attempts by patients to see a medical practitioner) not booking appointments for more than two weeks forward and so on...

When my medical practitioner made out my prescription for Zocor, I asked him what the medication was intended to achieve (big mistake) and was given the pitying and withering look from the family doctor, that is only reserved for poor fools like me; who know nothing of the busy life of a doctor. A quick quotation culled from some misguided publication by the government... that encourages statin prescribing to meet some mythical targets (for which the doctor gets paid extra if they 'treat' people according to the targets expressed) was the extent of the explanation given to me. I had tried to engage the doctor in a conversation about risks and benefits and he basically said, "you fit the profile so a discussion of the risks (when compared to the benefits) is not appropriate".

So being a patient who wanted to be better informed (so that I could make a better decision about saying yes or NO) I turned to the internet to do my research, and I managed to find what I was looking for... but only where there was no bar to making myself informed. A lot of the interesting looking research is barred to me just because I am not a medical practitioner and cannot gain the relevant membership of groups/web sites, that can supply me with the information I seek. It did not stop me seeking out the information which managed to wake me up to the horror that is now (and has been recorded for some considerable time) dawning upon people who may be in a position to make far more noise than that which can be made by a single concerned patient.

I don't suppose the course of action I took, when faced with a situation that I did not like, is available to every patient. We can state that it is open to anyone but realistically... is it? How many patients do not have internet access? How many patients cannot read to a reasonable standard? How many patients do not have the mental capacity to absorb erudite research papers and make sense of what they are reading? Having the right to say NO is not the same thing as being informed and it is the bounden duty of the healthcare service providers, to keep the patients informed and up to date... whatever their level of understanding and capacity to understand may be.

I am now informed to a degree that ought not to have been necessary for me to make an informed choice. I am staggered by the arrogance of the UK government, the medical profession and the drug companies. To persist on this ruinous course (that is encouraging statin use) in the face of evidence that is well documented, appears to me to be deliberately taking the line of least resistance.

I am very interested in knowing why my own family doctor is willing to play god with my life, without obtaining my consent.

[xrn]

Hmmm... the html tags appear not to be working despite me having set them to on. I will enclose your words, Ray, in this indicator: [*****]

[*****]Ray Holder said:
"Dear xrn
I wish you good luck with your information campaign!! However, I must tell you that over the last 4 years, I have written to many people in high places, with little or no reaction. From the PM, 2 Health secretaries, NICE, MHRA, various professors and consultants to placing letters on the BMJ web edition, with very little result."[*****]

Hello Ray. I can see that you have tried to inform the correct authorities and attempted to alert those who need to know. The only group who are missing from your list are the public. I don't say that in an effort to pour water on your time or work... I say it just to observe that the public are the group who really matter. The people and groups that you have mentioned, Ray, are not the people being forced to fall into line with the currrent 'best practice'.

[*****]I believe that the medical and research bodies are in a cleft stick, the financial figures bear it out, the great majority of research money spent in UK comes from Big Pharma, who decide which subjects shall receive funding. It follows that the big university hospital research personnel are virtually on the Pharma payroll and any research into unpalatable subjects is frowned upon. That probably carries over to research into other matters, where the outcome might upset the principal benefactor. All the top brass of such departments could put their department and even their personal position at stake by falling out of line.[*****]

I did not want to get sidetracked and have to address the issue of research and how it is funded at this point. I know that research has to be carried out and the issue of how divorced that research has to be from the drug companies is clear to my mind. The drug companies can (and do) employ their own medical staff nad as such, they could carry out their own research but would have to accept that it was tainted by their vested interests.

Research that is nominally independent of such influences would be the only way forward but there is an argument that it would founder and fall into disarray if the NHS were to promote research on its own. Funding research is a nice idea but it is not going to happen when the pot is always empty and the needs of providing the service are always put ahead of the need to carry out useful research. The independent reserach establishments such as the national Cancer research body are probably the model that should be examined and adapted to the needs of public health.

[*****]NICE committees discussing such drugs as statins are made up mainly of such leading persons, with less than unbiassed input to the proceedings, only certain members of the committee being allowed a vote. It really is a scandalous situation, but who is big enough to take it on? I am coming round to the idea that some such organisation as the National Audit office must be brought in, politicians only make political capital out of "Our great success in heart health" and would be defensive. [*****]

The hope for the embryo National Institute for Clinical Excellence (NICE) was that it would be a truly independent scrutineer of best clinical practice. Sadly, the organisation has not proven to be anything more than a puppet of the government. It is comprised of the great and good these days and the name has been subtly changed to become The National Institute for HEALTH and Clinical Excellence. That suggests to me that their original role (determining what was the essence of excellence in healthcare) has now been subsumed into determining what ought to be the national policy on various health issues. It would be a foolhardy practitioner who works in opposition to the printed statements of NICE.

I detest the underlying newspeak that George Orwell predicted in his novel '1984', where we (the unknowing public) are supposed to make the connection in our minds that NICE equates to a body that is helping us. yuk! In my own memory, the much vaunted Commission for Health Improvement was initially abbreviated to CHimp but it has since been changed... although I cannot see why.

[*****]I have been putting some education for doctors in my letters on the BMJ website, whose accent is on evidence based, peer reviewed medicine, but is that evidence always the whole truth and nothing but the truth. There is also the effect of "economy with the truth", and are reviewing peers any less under Big Pharma's influence than report authors? There is a whole can of worms waiting to be opened up.[*****]

I can see some value in keeping the unpopular view in sight of those who would rather not see it published. Young clinicians wishing to make a name for themselves within the highly competitive world of the junior clinician, who is vying with many other clinicians for a career pathway, could see it and try to carry it futher. Is writing to the BMJ website an option that any person can take up? What do I have to do to sign up.

[*****]Keep battling on, you can give me a ring to compare notes if you wish.

Ray[*****]

Surely, I intend to do that. If you PM me with your phone number, I will be delighted to call you and swap notes.

xrn

[Ray Holder]

I have sent web messages to newspapers, but only had one published, and as a disabled 85 year old I can only work this way. This site is the only one that has made my views known to large numbers of people.

The BMJ website is [www.bmj.com,] with a link to the journal site. Once there click on Current issue to see as much as you can of articles and click on Rapid Responses where often one can find something to hang a posting upon. No membership is involved, I have had 12 published so far.

I would rather you looked up my number on the Bt.com website than publish it on an open page here, if you don't mind, but should be glad to hear from you.

Ray

[NurseJudy]

Hi again! There is more documented info on Spce Docs web site than you will find in most places. I also ordered his book. Documented. You will also find some info at [http://www.mercola.com/]. Type statins or cholesterol in the search bar. There is also a major study being done on statin site effects at the University of California San Diego who is analyzing these problems. [http://medicine.ucsd.edu/ses/] My father was on this study, and you will find several of my postings on Space Doc message board about what happened to him related to statins.

A good decision is an informed one.

In the US, I had developed early signs of renal damage from diabetes. My doctor, head of a large diabetes association, said I did not need an insulin pump. I educated myself, and became convinced I did. After 5 years of pump therapy, diet change, supplements from a naturopathic doctor, my kidneys recovered. I wrote an article that was publlished in Practical Diabetology? What happened to the first doctor whose practice I left? He started using pumps. Doctors do not live in our bodies and feel what we feel. The norm may not be the norm for us, or they may be misinformed or behind the educational loop.

In the US, we have a board that reviews drug adverse events. It is the FDA Medwatch. People who have problems can report them. I think the doctors are too busy to do so, and often do not believe the statins can cause them. I hope when the body of evidence gets large enough, they will pay attention.

Hope that helps! There is now class action suit paper for Pfizer's failure to notify the doctors and the population when their own studies showed memory loss and brain dysfunction. [http://www.krumlaw.com/]

Here in the US the Pharma make more money than any other group. They have over one lobbyist per Congresman. They have a budget for advertising, if I remember right, that is larger than our homeland security and military budget put together. Most of the ads on TV and magazines are from pharma. Will they get bad press? I also read that of the top 500 companies in the US, the top 10 pharma make more money than all the other 490 put together! Here, our doctors get a kick back (from my friend that looked into a drug rep job) for taking samples! Pharma reps sit on the FDA board. This is our regulating board!

Diabetics are being told to take statins. I would not, even if my cholesterol were 700! We already get neuropathy!

God bless, and hope that helps!

[xrn]

OK Ray, thanks for the BMJ link. I have posted a letter under rapid responses and hopefully it will get published. If it does, I will post a link to it.

I was not expecting you to publish your phone number openly. I had thought that you could send it to me in a PM (private message) but I have no idea what facilities are available on this forum board yet. AS indicated earlier, the HTML tagging seems to be broken at this time. It allows one to selectively quote from posts and to highlight the text with bold or italic or change the colour.

I had written to the administrator today with the problem but as yet, there has been no answer.

Feel free to e-mail me at... jeff (at) jcable (dot) co (dot) uk

It is written like that to reduce spam but you will need to change the (at) for the @ sign and the (dot) for a . while making sure to leave no spaces between any part of the full e-mail address.

Regards,
xrn

[xrn]

[quote="NurseJudy"]Hi again! There is more documented info on Spce Docs web site than you will find in most places. I also ordered his book. Documented. You will also find some info at [http://www.mercola.com/]. Type statins or cholesterol in the search bar. There is also a major study being done on statin site effects at the University of California San Diego who is analyzing these problems. [http://medicine.ucsd.edu/ses/] My father was on this study, and you will find several of my postings on Space Doc message board about what happened to him related to statins.

A good decision is an informed one.

In the US, I had developed early signs of renal damage from diabetes. My doctor, head of a large diabetes association, said I did not need an insulin pump. I educated myself, and became convinced I did. After 5 years of pump therapy, diet change, supplements from a naturopathic doctor, my kidneys recovered. I wrote an article that was publlished in Practical Diabetology? What happened to the first doctor whose practice I left? He started using pumps. Doctors do not live in our bodies and feel what we feel. The norm may not be the norm for us, or they may be misinformed or behind the educational loop.

In the US, we have a board that reviews drug adverse events. It is the FDA Medwatch. People who have problems can report them. I think the doctors are too busy to do so, and often do not believe the statins can cause them. I hope when the body of evidence gets large enough, they will pay attention.

Hope that helps! There is now class action suit paper for Pfizer's failure to notify the doctors and the population when their own studies showed memory loss and brain dysfunction. [http://www.krumlaw.com/]

Here in the US the Pharma make more money than any other group. They have over one lobbyist per Congresman. They have a budget for advertising, if I remember right, that is larger than our homeland security and military budget put together. Most of the ads on TV and magazines are from pharma. Will they get bad press? I also read that of the top 500 companies in the US, the top 10 pharma make more money than all the other 490 put together! Here, our doctors get a kick back (from my friend that looked into a drug rep job) for taking samples! Pharma reps sit on the FDA board. This is our regulating board!

Diabetics are being told to take statins. I would not, even if my cholesterol were 700! We already get neuropathy!

God bless, and hope that helps![/quote]

Hello again.

Information and theories are not what I am looking for, primarily. I am far more interested in peer-reviewed publications that have concluded that statins may be responsible for causing damage to the patient or that statins have not lived up to the claims being made for them.

Safety data is hard to come by and longitudinal studies with significant numbers to maintain the power of the study are also not easy to come by... but I am working on it.

The San Diego study will be of great interest when it is published. Thank you very much for the link. I will try and make contact with the priniciple investigator and see if there are any preliminary results that will help us and maybe we can contribute to it in some other positive way... perhaps like recruiting people who have been damaged.

The diabetes episode you described sounds like a nightmare and it was clearly the right time to find a new medic. I can understand that ones medical pratitioner may get a little out of touch but I do not understand why they must pretend to know something when they don't. I would have said that knowing when you don't know was the most important personal quality that a medical doctor ought to have.

There is a government body in the UK called the Medical and Healthcare products Regulatory Agency (MHRA) and the public have access to their reporting system for adverse drug reactions. Of course, the proviso is that the event is first recognised as a drug reaction and also that the member of the public or the patient's family knows what to do to make the report. The flaw is that this could still place outside of the knowledge of the treating doctor... where the patient may have died and there is no need for the family to have any contact with the treating doctor again.

The class action against Pfizer may not be enough to create an awareness of the risks to other manufacturers. (I would have thought it would be hard to draw any other conclusion but how and ever... money before safety)

Regards,
xrn

[bucho]

xrn,

Based on my experience, you made a very wise and fortunate decision to decline the Zocor from the start. Now 8 months out from stopping a 3.5 year regimen of Zocor (and stopping in spite of my doctor's opinion) it seems like I've reversed the aging process -- at least I thought it was age. Still not completely recovered, but I'm feeling levels of vitality and energy like 5 years ago, and which I never thought I'd experience again. I now realize that the Zocor degraded a wide range of mental functioning, in addition to obvious muscle and nerve damage, so slowly that it was imperceptible day by day.

An amazing development: I can now identify statin users by certain behavioral characteristics! At work, they are the middle-aged male (as am I) who displays a somewhat depressed and slow-to-respond demeanor. Their speech tends to be "thick" or slurred, and they have a sudden flash-point, usually associated with frustration or pressure. This was me a year ago, an entirely different personality from my formerly energetic self (just ask my wife). I have now asked a handful of such colleagues if they are on a statin, and the answer has been yes! I expect most are stopping the statin or seriously considering it. I've already butted into their business so I'm not following up too closely.

Congratulations on your decision!

-bucho