the continuing saga of ... me

[pops]

The continuing saga of … me.

March 10th 2010:
I go to the doctor for a physical. My total cholesterol is 170. Triglycerides 53. HDL 49. LDL 121.

Doctor says because I have family history of heart disease, my LDL is too high. Puts me on lovastatin. I take it 3 weeks, experience pain in my legs. I cut to half a pill, 5 mg. The pain is less but not gone. A week later I up it to a whole pill, 10 mg. 4 days later I'm in excruciating pain.

Now, 2.5 years later, I still have pain.

Previously I'd been an amateur athlete, exercising up to 4 hours a day. Immediately after this crisis, I could only exercise in pain 20 minutes a day, tops.

Now all I can do is 45 minutes, and I can no longer exercise hard because of pain.

I've tried all the alternative treatments, like COQ10. They help a little, but the effect is temporary. Stop taking them, and the pain is back full force. Damage, apparently, has been done.

My total cholesterol is now 191, LDL 133, HDL 46, triglycerides 67. In other words, because of lovastatin, in my opinion, my risk of heart disease went up as the quality of my life went down. And it seems the effect is permanent.

I don't think my case, or others like it make it to the statistics. They write people like us off; delete the data from the case files, act as if this never happens.

Some doctors claim muscle pain as a side effect from statins are ½ of one percent. Others say these side effects are 35-40%. From a random sampling of people I know, 35-40% is accurate.

An article in Muscle and Nerve Magazine stated that professional athletes have muscle pain on statins 75% of the time.

Per cases I've read on the Net, some people's muscle pain never resolve.

Had the doctor given me an accurate warning, IE: you have about a 75% risk of muscle pain because of all the exercise you do, and the pain might never go away after you stop taking statins, I never would have risked taking them. Hindsight 20/20.

Now that you know what I know, I suggest the following; if you are in good health, and if there is no sign you have coronary artery disease, do some serious research on this topic before saying yes to a prescription for a statin.

I sure wish I had.
Have a nice day.

Pops
Disclaimer: I am not a medical professional and cannot give medical advice.

[cjbrooksjc]

Pops: After 6 years off Lipitor/Zocor (5 years on the Statin regimen) I still have a significant reduction in my quality of life and, baring any miracle discovery, don't expect to recover. I empathize entirely. If, as they suspect, our mitochondrial DNA or RNA have been irreparably damaged, I see no real hope for improvement. I think those of us who suffer permanently simply have to operate at the level of activity left for us. It sucks; I know, but that's my assessment.

Brooks

[pops]

Brooks,
Yeah, acceptance is all we have. And wisdom. Yes, I do mean that. There will never be a time when I take a drug without researching it again. And perhaps by telling our stories, we have helped others. The pain? "Whatever doesn't kill you makes you strong." I sure hope that's true. Have a good day, and don't let the perpetrators of lies get you down.
pOps

[lars999]

pops,

Regarding your disclaimer -- "I am not medical professional and cannot give medical advice", I have come to firm conviction that most doctors should NOT be trusted to prescribe expensive, highly profitable medications. We have all learned the hard way to be highly leery of such medications. In recent years, we are also hearing about all those dubious, unethical practices drug companies use/used to get doctors to prescribe their highly profitable drugs, including Lipitor and probably all the other statins. One can hope that introduction of generic statins will so decrease the profit factor that drug companies will have much less incentive to entice doctors with financial rewards to prescribe Lipitor, etc. We can hope ....

FYI -- to a lesser extent I too am severely limited in how much, how hard I exercise and how well/vigerously I can ski, both cross country and downhill. Over two years after quiting Lipitor I would rate my recovery no better than 50%, and that is with plenty of Ubiquinol and Acetyl-L-Carnitine, rest, spacing of days on which I can ski (every other day is max frequency, unless I am willing to be laid up for3-4 days).

[b]To All,[/b]

After reading extensively about "cholesterol hypothesis, aka, scam", as well as reading extensively about Linus Pauling's well grounded hypotheses about role of vitamin-C in protecting linings of our arteries, also McCully's extensively investigated "homosystein hypothesis" I accept that Pauling and and McCully have useful hypotheses and I follow their advice. I flatly reject the "cholesterol hypothesis" for the scam it really is. IF the cholesterol scam had any solid basis, I would have long since been dead of cardiovascular problems. Instead I have extensively plaque-free arteries and only minor, age-related issues with my heart, despite nearly all of a long lifetime (72 years so far) of high cholesterol and "bad" ratios of "HDL/LDL".

Without the cholesterol hypothesis/scam, there would have never been grounds for development of statin drugs and onset of all the damage we know so well.

Lars

[pops]

Lars,
It's funny, but after years of researching both statins and the effects of diet on CHD, I have found nothing but contradictions. Since you have bad cholesterol numbers and are relatively free of atherosclerosis, and since the absolute reduction in risk of CHD on cholesterol drugs other than statins are unimpressive, I can't help but wonder if they have a clue as to what causes heart disease. There are even those who claim exercise has no effect.

Which brings me to the following suggestion:
Live well, be active, be happy, eat good food, enjoy life to the fullest. Something is going to kill you eventually no matter what you do!
pOps

[lars999]

pops,

I have a different take on all these conflicting informations. I find it informative and highly useful to align my thinking as follows:

1) there are some true scientists, Linus Pauling and Kilmer McCully are excellent examples, that have developed excellent lines of evidence and insight into two different underlying natural biochemical causes of cardiovascular disease. Both these causative paths damage linings of our arteries, leading to our bodies attempting to remediate that damage with crude "bandaids", commonly called plaque. Both have demonstrated simple, inexpensive, effective remedies that treat the causitive issues, not just the symptoms -- vitamin C in Paulng's case and a complex of vitamins B in McCully's. Neither of these remedies offer major drug companies huge profits.

SO, we get 2) drug companies driven primarily (soley?) by profits to undertake hugely expensive research programs, followed by immense marketing and propaganda campaigns and extensive efforts to subvert national protective agencies, such as FDA in USA, and the entire medical community (lots about both in national news in recents decade or so). Statins are one logical result, but hardly the only one. Another logical result is groups of victims that share their bad/horrible experiences with these hugely profitable drugs, like this forum.

There is a third adverse "process", from my perspective -- at least for patients. That is creation/invention of a medical problem that is tailored to development of market for some expensive drug. I consider that the deplorable "cholesterol hypothesis" was rescued from its much deserved oblivion by invention of a highly effective means to reduce cholesterol concentrations in blood -- and, of course, the world's most effective marketing of a drug (Lipitor). SO, we have seen the callous exploitation of a major national health problem, heart and artery disease, in the interest of huge profits, and the pervasive mantra "statins don't do that" to protect that incredible cash cow.

Call me nasty, call be victim, call me angry -- at least two of three fit.
Lars

[pops]

Lars,
In the past I never would have believed that the scenario you described could happen in the U.S. I served in the Army. I have American flags in my house. I'm a member of pro-American organizations. Had I not been stricken by a statin, and virtually had all the good in my life been ruined in one month, I would have thought your words were lies.

Unfortunately, I know you're telling the truth. It's sad. I think we need to pray for our country, because the America we've loved might not exist much longer. This country is supposed to be based on checks and balances. It's hard to have faith in that when your life is ruined by deliberate disinformation whose only possible purpose is profits.

Ironically it's been stated that greed is good. However, greed is one of the Seven Deadly Sins (avarice). And it is definitely not good.

We have both been victimized. I know many others who have too. I now know of 4 people who have been put into wheelchairs because of statins. I have a hard time believing doctors aren't aware this is happening.

Two doctors I've seen since being prescribed a statin said they never would have put me on it. My total cholesterol was 170 at the time. I had no heart disease. Realage.com says that cholesterol levels below 160 are dangerously low. Statins lower cholesterol an average of 40%. It was predictable that statins were going to bring my cholesterol levels to the danger zone. From what I hear this is happening to a lot of people. One woman I know of had her doctor put her on a statin, though her total cholesterol was 160. She, of course, developed muscle pain as a result.

I'm sure you've researched statin side effects as well as I have. Tell me why you think it is that doctors are ignoring the facts. I really would like to know.

Thanks.
pOps

[lars999]

pOps,

Here is a list, in no particular order, other than when they came to mind. Little, if any, of this is secret any longer.

1) You might not have heard of this one. I view it as another great idea perverted or gone wrong. "Best Practices" is its name. It is said to have been developed to increase assurance that doctors, especially in clinics, hospitals, etc. followed the "best practices" known to modern medicine. I see it as having been subverted into a management tool to assure that doctors maximize profits for their employers. In practice that seems to be lots of expensive tests and procedures, in part to keep patients feeling they are being treated "well" (with rise in medical costs in USA with decrease in effectiveness the natural consequence). All this cheered and abetted by the huge and very profitable medical industry.

"Better living through management and marketing." seems the motto.

When I "forced" (it was easy) a senior cardiologist to determine how much plaque lined my arteries (answer, none could be seen in non-invasive testing of accessible major arteries) he made a revolting comment that I chose to ignore at that moment -- "All cardiologists take statins." I bit my tongue hard to keep for replying "I thought cardiologists were smarter than than!" -- I wanted additional information from him before removing him from my life.

2) Direct to patient advertizing. All those adds that end with "Ask your doctor if XYZ might be good for you." Some of those TV spots are exceedingly graphic -- remember the "toe-tag" one for Lipitor? Take Lipitor or die! was the message. Friends kept asking "Are you taking Lipitor? They were relieved when I said "Yes" ..................... unfortunately for me.

3) Perks for Docs. This has taken many forms and is regularly reported briefly in national USA news media after each highly costly FDA financial penalty against one of major drug companies. Paid seminars (ie, expensive vacations to exotic/popular destinations) for doctors and thinly disguised as "training/product education" is one that seems well exploited by medical industry. Lucrative speaker fees is another avenue to reward doctors. Control of publication of research results in medical journals -- an incessant hindrance for those of us than can and do read such reports -- lots and lots of ways to control this -- follow Dr. Beatrice Golumb's efforts to document this. Drug and equipment reps that are medical industries direct to doctors marketing agents are a very effective method -- visit a few doctors in same specialty and note the differences in expensive drugs from one doctor to another -- then do a bit of snooping about their drug reps and the free meals, etc. they disburse -- my finding has been that the prescribed drugs are same as freebi drugs supplied by drug reps -- me thinks a simple cause-effect is in play.

4) We all hear about various industry financial contributions to political campaigns, about the lobbying by industry groups, etc. And now we have US Supreme Court decision in favor of Citizens United, which removes most barriers/limitations to huge contributions by corporations to political campaigns. Elected officials bought and paid for has long been a feature of civilatizations -- now including USA's as charter member.

5) Not least, is all of those "clinical tests" of statins that were designed to get FDA approval to market -- NOT to chart and publicize all the adverse side effects we all know so well. Primary clinical methodology is widely reported to be "run in testing" which identified candidate test persons that reacted badly to statins and then remove them from further testing. Plus the high-decibel marketing of statins as so harmless that "they could/should be put into public drinking water, etc. etc.

6) Last but not least, is extensive medical industry infiltration of FDA, etc. by the well-known "revolving door" process, where highly placed individuals alternate being employed by Govt regularory agencies, with employment by medical industry. This is hardly limited to things medical -- it is reported to widespread.

So much for now.

FYI: I grew up with Russians from Shanghai as well as folks from Norway, Sweden and Finland. The Russians were part of the large European population that Imperial China localized in Shanghai -- they had lived there for generations. Scandinavia got a ringside seat to World War 2, as well as direct involvement. Collectively they steeped in me very different world views than you experienced. They were survivors of the Global Madness known as World War 2 and all the madness preceding it. I do have "one foot in USA" but I also have a few others elsewhere.

Lars

[lars999]

pOps,

Regarding low cholesterol levels, I have my personal take on this and it supports your viewpoint.

When I first was on Lipitor, my total cholesterol went down for 250+ to about 200. I did not seem to notice anything adverse. Then it kept going down, ultimately getting down to 150 and impressing doctors. By then I was really noticing that something was wrong. When I finally decided to do Internet search about only drugs I was taking, I was a WIMP!! Major adverse effect for me was greatly reduced stamina, down to where I was a mere "shadow" of my former self, with one foot in grave, only fit to ride a wheelchair or gurny to that final resting place.

This drastic reduction in total cholesterol, so resounding cheered by doctors, was recovered from as my total cholesterol went back up to normal for me and life greatly improved to a reduced version of my former self. After that experience, I can only think of statins as POISON PILLS!!

Lars