statins right and wrong

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

statins right and wrong

Postby pops » Tue May 08, 2012 11:59 am

It's been 2 years and 1 month since I stopped taking lovastatin. I took it for 33 days, during which time I went from an athlete to being nearly crippled.

I have since learned a lot about these drugs.

Statins seem to benefit some people. Those who have had a heart attack or stroke, or those who have proven atherosclerosis might have better life expectancy if they take statins. Some of my deceased friends might be alive had they taken them.

On the other hand, many, like myself, can't tolerate statins, and in those people statins should never be used as "primary prevention." Unfortunately doctors don't know who those people are until they try statins on them.

For people without heart disease who don't have proven atherosclerosis, it might be prudent to use diet and exercise as a preventative, and forgo the cholesterol medication. In these cases statins might very well cause more harm than good. For me, after taking lovastatin, I had pain, inability to exercise, and weight gain. This did not, I feel, lessen my risk of cardiovascular disease; in fact, this may very well have increased my risk of cardiovascular disease. And it certainly did not improve the quality of my life.

Because (I believe) the patent on virtually all statin drugs have expired, they aren't pushing them in commercials on TV like they used to. I assume they are also not pushing them to doctors.

I noted there was an article in the New England Journal of Medicine a few months back that stated that muscle pain as a side effect of statins is actually about 20%, contradicting the outcome of many statin studies. And the reason the NEJM stated for this discrepancy was that in studies people who may have adverse reactions to statins are rejected so as not to cause harm, whereas in clinical practice many more people are prescribed these drugs than would be in studies.

No one knows what percentage of that 20% will wind up with permanent pain as a result of taking statins.

Once more, I question the wisdom of giving statins to patients without known heart disease and/or atherosclerosis.

I hope you all are doing well. May your pain diminish or go away.

pops
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Postby lars999 » Tue May 15, 2012 7:56 am

I too am now two years after quitting a statin, Lipitor. I too had been drastically reduced in my physical abilities, as well as developing various adverse effects that departed after I quit Lipitor. Now that I am back in same part of USA and again able to hike for many miles per day (I am 72) on same trails that were nearly impossible for me two years ago, I can see plainly just how much damage Lipitor had done. Some damage, like neuropathy in right leg, resulting in poor balance on that leg, seems to be more or less permanent.

I too have been following articles in New England Journal of Medicine about statins. While I am pleased to see more accurate presentation of actual rates and types of adverse side effects from statins, than touted from deliberately flawed clinical tests leading to approval to market, I remain much less than fully satisfied because there is little presentation of the extensive, life-degrading effects so many of us have suffered and continue to suffer.

I consider it especially deplorable that there seems little effort or success in developing ability to accurately screen individuals BEFORE prescribing a statin.

Thanks to my very bad experience with Lipitor and especially the persistent adherence of medical community to junk science Cholesterol Hypothesis, I no longer trust the medical community's diagnosis on much of anything. And I make it clear that that distrust is a direct consequence of my Lipitor experience. Only good consequence of this is that I do far more homework before accepting any treatments. I am no longer a "good patient". I am also not a patient that doctors can process in 15 minutes. I continue to, sporadically, search for a compatible doctor -- so far unsuccessfully.

Lars
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reply to Lars

Postby pops » Fri May 18, 2012 8:08 pm

Lars, I agree with you on all counts.

There is, however a silver lining. We have what amounts to enlightenment, in medical things, anyway. We will always question.

Ironically I did not research statins before taking them, and that was the first time in my life that I did not research a drug that was prescribed for me.

Lesson learned, the hard way. Which means it's a lesson I will never forget.

Hope you continue to improve. Thanks for your input. Enjoy every moment. Living well is the best revenge.

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Postby lars999 » Sat May 19, 2012 2:42 pm

pops,

I too have normally done at least some "due diligence" before taking a prescription drug, but did not with Lipitor. I know why I did not -- it was a demanding and very negative time in my life, following death of person most important to me. I could blame doctor that described Lipitor as a "win-win" drug -- I later dismissed him from my life -- for cause. And I told him why face to face -- that felt GOOD!

Silver lining? Maybe. For sure a needed self defense action in today's medical world.

Lars
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Postby pops » Tue May 22, 2012 11:17 pm

Lars,

I'm sorry we both failed to research statins before taking them. I don't blame my doctor, though. True, I was angry. Now I see that the medical community strongly advocates that doctors prescribe statins. In fact Lancet now claims statins are for everyone. My doctor is not at fault; it's the system.

I'm glad we're recovering, albeit not completely. It's sad that so many are severely and permanently harmed by these drugs. The "experts" claim the benefit outweighs the risk. I sense that diet and exercise are superior to cholesterol drugs because there are no side effects.

Exercise alone, however, doesn't seem to be enough. I've known lots of people who exercised plenty but still had heart attacks or died of a coronary event caused by atherosclerosis. IE: doctors might be right in the sense that most people are not going to bother to eat right, so intervention, even with potentially harmful drugs, could be a better option than developing heart disease.

I did change doctors. The doctor who prescribed statins for me appears to dislike me now. I think that's because I was very vocal about my disapproval of being prescribed a drug that caused me intense pain. I also have had a falling out with a sister whose husband researches statins professionally, and another sister who recommended strongly that I take statins. In other words, statins have caused huge problems in my life, and not just medically.

Ah well. It is what it is, as my son says. You can't change much in this world. Sometimes the best you can do is accept the way things are. We have some pain. It could be worse. Keep on living the good life, Lars, and so will I. I have to have faith that in the end there will have been a reason for all this. "Whatever don't kill you," and all that.

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Postby lars999 » Wed May 23, 2012 12:38 pm

pops,

You mention "silver lining" -- for me perhaps best "silver lining" from my adverse experience with Lipitor is that I have learned a lot about things that actually lead to clogged arteries, heart attacks, strokes, etc. and all those bogus "explanations" as to why they happen, especially "cholesterol hypothesis" and all the junk science in support of it. Linus Pauling, a major figure in my chemical education decades ago, is one of my heros, as are several newly acquired, such as Uffe Ravenskov, that I would have never encountered had I never taken Lipitor. There have been some nice rewards.....

Learning how statins alter our essential biochemical processes, just to lower cholesterol, has been a real eye opener. Woulda been nice if cost of that post-graduate education hand been in money rather than damage to my health. I "thank" the arrogant medical system for that very useful education -- otherwise I would have continued on my way, accepting all that BS that cholesterol is a "big baddie".

Some of my payback to medical system that pushes statins is to assist in getting as many folks as I can off statins and back to health. Gratifyingly, I see that doing that can have a nice "ripple effect", as one success leads to others and those to still others ........ And yes, those successes make friends AND enemies, as well as creating conflict, a process I have been through again and again in past 40+ years, in a wide variety of "fields". Long ago I quit being very concerned about enemies so acquired. Successfully getting someone to realize that a statin drug is causing them serious problems --- AND --- that quitting that statin results in a large measure of reversal, is a "bitter-sweet" satisfaction but, it sure beats kicking myself for failing to act.

Pluses and minuses, black clouds and silver linings,
It has been an interesting "ride",
Lars
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Postby pops » Thu May 24, 2012 2:05 pm

Well, Lars, sadly, all the best lessons in life come at a cost. "Wisdom don't come cheap," a wise man once said. By golly, I think that wise man was me!

Seriously now, prior to statins I'd read there was corruption in things pharmaceutical, and I believed what I'd read in a kind of detached way. It was one of those "That can happen to them, but it could never happen to me" kinds of thoughts.

Well, I've been hit over the head with a frying pan, and I have gained definitive wisdom *now*!

The lesson, to myself, and to others, is this:
Do the research before you pop that pill!

Unfortunately, natural medicines also have side effects, so that applies to everything.

Yes, I have shared my tale regarding statins with many. And there are some people who need them. I'm of the opine that the numbers who need these very dangerous drugs are far fewer than the numbers they are being prescribed for. Realistically, in primary prevention, somewhere between 1 in 60 and 1 in 160 benefit from statins. That's a really low NNT - Number Needed to Treat. If medical science could isolate the precise person who would benefit from these drugs, and not prescribe them for everyone else (who can potentially be harmed by them), then I would praise them to the ends of the Earth. But they can't. Or they won't. Or both. Which leaves people like you and I who were far better off before we popped their magic little pills.

Well, if one person reads these posts and it causes him or her to think, and thereby prevents one adverse event, then good things have happened. On the other hand, if that approximately 1 out of 100 who needs statins to prevent a heart attack reads this post and does not take his medicine, then we have harmed someone. It's a crap shoot.

I hope you continue to get better. I hope I do too. Maybe someday, ten, twenty, thirty years from now. medical science will be better refined and there won't be people like the two of us. We can hope.

Have a great day Lars.

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correction

Postby pops » Thu May 24, 2012 2:14 pm

In my previous post I meant "That's a very high NNT."
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Postby lars999 » Fri May 25, 2012 8:17 am

pOps,

It is those very high Number of Patients Needed to Treat with statin drug to prevent a single initial heart attack that is/was one of most decisive reasons for my quiting Lipitor and for viewing ALL statins as a bad crap shoot for those whose prospects for a first heart attack are very low, as mine was and is.

I have yet to see any clear basis for all those claims of "anti-inflammatory" properties of statins. Seems like a dodge to non-demonstrable properties to maintain flow of BS about statins.

The "statins for everyone" line really turns me against statins and those that would utter such nonsense.

Off hiking again today -- cold front went through last night and temps are 20sC today instead of 30sC of yesterday.
Lars
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Postby pops » Sat May 26, 2012 11:26 am

Yeah, I know, Lars, that huge NNT tells lots about these drugs.

On the other hand a very good friend of mine died recently. He'd been taking fish oil, vitamins, following a good diet, exercising regularly, taking a baby aspirin daily. He was a young 77. Yet his heart went South and he was gone. Great guy, fun to be around. He too reacted badly to statins. Told me they were poison. Caused pain in all his muscles.

Clearly the alternatives to statins didn't prevent that big coronary event for my friend. While I'm sure he's in a better place now, I kind of wished to see his smile a few more years.

So what if the docs could have found either a kind of statin that didn't give him side effects or given him a low enough dose so he could have tolerated the side effects? Would he have lived longer? I don't know. But it's possible.

And here I am, sounding like a salesman for the statin manufacturers. Sorry about that.

"What is truth?" Jesus asked.
I've got the same question.

Have a great day Lars. Have fun hiking. Live fully. Love with all your heart. This is a short visit, then we're gone. Someday when we're dust, taking or not taking statins will be meaningless to us. But maybe the medical community will refine their use of these drugs so they're effective in the right people and not prescribed for the wrong people. And maybe profit motive won't play a part in their decision. Along about then everybody will be saluting the flag and saying "In God we trust." Hey, it could happen.

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Postby lars999 » Sun May 27, 2012 12:43 pm

pOps,

Lots of types of heart attacks, some having nothing to do with clogged arteries. Some in "Old Ticker Just Quit" category, perhaps cause those nice little electrical signals, that keep hearts beating, quit or got too confused.

We all get to die sometime -- some before median age, some after.

Just think of all those archeologists with no old bones to study, if homo sapiens, homo erectus, homo neandertals, etc. never died. They would have to become cultural anthropologists and go batty trying to interview and do DNA tests on all those folks that never died and never got eaten by lions, etc.

Lars
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Postby pops » Sun May 27, 2012 1:27 pm

Lars,
Too true. All kinds of things kill us. Life is deadly. Living is the ultimate cause of death. Clogged arteries are only one cause of cardiac disease, but according to literature, it's the most prevalent. Doctors cast their statin net wide in hopes of preventing unpredicted coronary events due to atherosclerosis.

But doctors don't know who these statins will help and who they will harm. At least not until trying them on a patient. They also don't know how many of the patients will have muscle pain and continue to have muscle pain even after the statin is discontinued. Medical documentation claims these cases are rare. I don't have a million dollars to perform a double-blind study, but I suspect these cases are not rare, and are in fact common. At least that's what I've learned by talking to people. In fact, if the discussions I've had with normal folks like you and me are representative of the rest of society, then muscle pain strikes somewhere between 30% and 40% of patients. This leaves many without the ability to exercise as intensely as they did before statin therapy, which would logically increase their risk of heart disease. I'm talking about using statins in primary prevention here, not people who have demonstrated atherosclerosis and or heart disease; in the latter, statins might be a wise choice, keeping doses low enough for the patient to tolerate them without discontinuing the therapy due to an adverse event.

I'm not a medical professional. But thanks to my severe response to statins, I've done tons of research into these drugs. I think they are over prescribed. And I think the damage they have caused is unacceptable.

There are, however, doctors who are aware of the above. In fact, 2 out of 3 doctors I've been to in the last few years are. One wasn't. That was my downfall. My sister also strongly encouraged me to take statins. So far following that advice was the worst mistake of my life. I hope I don't make any more like it.

And yes, if they found a way to make us live forever, archaeologists would have nothing to do! And if they found a way to prevent all illness, doctors would be out of work. Neither of those things are going to happen, so both those professions are safe.

I hope you have a good day. And a good doctor.
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Postby lars999 » Tue May 29, 2012 8:26 am

Morning pOps!!

All great medical and social advances do not uniformly lead to better lives for people. I mention two that very adversely affected two countries that I know lots about, and assuredly many others. It is interesting to think about statin drugs in light of these two historical events.

One of mankind's greatest medical advances, pasturization, lead to major social disasters in at least two countries that I know lots about -- Norway and Sweden. In those two countries rural populations had come to a functional equilibrium between food supply and population density. Then came this wonderful discovery that lead to more persons, mostly children, surviving. Now that same limited food supply was no longer adequate -- and you can guess what consequences were as more and more persons lived longer.

A major social advance in inheritance laws in these two countries came at about same time. It was no longer the oldest male child that inherited farmland, but, instead, it was divided more or less equally among all siblings. Now those same siblings were seemingly better off, at least for a generation, and were even more prolific than before. But, now those more fair inheritance laws strike again and again, with each generation, and now each individual family member has even less land to farm, commonly well below what could sustain even subsistence farming. You can easily see where this lead.

For those two countries, these two well intended historic "advances" lead to widespread poverty, starvation and another major cultural event -- massive immigration to America.

Where would you place statin drugs and their consequences in this historical perspective?

World's medical community has been and still touts statins as THE solution to "curing heart attacks" and even want to give these drugs to all of that high fraction of persons that will never have a heart attack, just to "assure" longevity of those few that will. A rather extreme measure to redistribute both "health and wealth". Those of us that have had our lives very adversely affected by one or more statin drugs do not share that opinion or endorse that redistribution.

We also know about all those highly touted clinical studies that were preceded by "run in studies" with a statin drug and everyone that reacted badly was rejected from further inclusion in that clinical trial. Of course, this was done in best interests of drug companies wanting to get an expensive to develop drug approved and marketed for a high price. And, of course, all those data about % and adverse responses of those rejected individuals were never published.

And do not forget that statins are clearly a "victory for marketing", mostly directly to prospective patients. Is this a superior, more intelligent way to "practice" medicine than via highly trained and educated medical professionals? This suggests medicine by "witch doctor" and most easily influenced "patients".

Posters to this website suspect from our personal experiences and knowledge that statins harm far more than the few % that drug companies claim, perhaps as many as 50%. Some of us even see statins as prematurely aging and otherwise adversely affecting a larger fraction of those persons that ever took one of these drugs.

Philosophically, how can any drug be a major, positive advance in health when it so extensively messes with our bodies most critical biochemical processes? Seems more like a positive advance in increasing population of patients -- wonderful advance for expensive modern medicine!!

I for one would not grant statin drugs the widespread successes that pasturization ultimately garnered. At least not on basis of lowering cholesterol. Will they come to be seen as deleterious to mankind as those "much more fair" inhieretence laws enacted in Norway and Sweden in early 1800s?

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