Dr. Graveline...S.O.S.

[Dee]

Dr. Graveline,
Thanks for all you have done. Now I would like to humbly ask more of you. As you well know, those of us with Statin damage have been swept under the rug by both the medical community and the legal community. PLEASE gather your partners in research and get all this "out there". We victims can post on the internet until our fingers fall off, and you can write 20 books but that will not get this situation where it needs to be...BEING SCREAMED FROM EVERY TALK SHOW ON TV AND RADIO.

I have seen the tide of many situations turned when exposed on the major shows such as Oprah, Dateline, 20/20, Primetime, 60 Minutes....etc. (Have you sent any of these shows your books?) This entire Statin problem is of extreme danger to the public and needs to be exposed in a way so that the FDA and Pharma industry can not duck the facts. PLEASE HELP US!!!

My apologies for being so forward and asking more of you. My frustration with this entire situation has hit critical mass after being crippled by Pravachol and watching my husband suffer memory and muscle problems from Lipitor. I struggle every day to "have a life". I was struck down at 43 by the statin poison.

[SusieO]

Dee; this is a very good post in my opinion. We do need some type of spokesperson who is "famous" that will be listened to by the those who can do something about getting the news out that Lipitor does do harm to so many of us.

I, too, am tired of just posting on board after board yet can't find a doctor to admit my problems are from this evil drug. I have begged for a muscle biopsy and have been told it isn't necessary as my CPK levels were fine - sure after I was off the drug for a year they tested me - they didn't test me when I was on it and having even more problems.

If all our voices and our pleas could be brought together I bet we number in the hundreds if not thousands of sufferers, yet we are all spread out across the U.S. so doctors think they are only seeing one or two people who complain about the same thing and are not paying attention to it.

Please Doc help us out!!!

Sue

[Dee]

Sue,
I agree...the true scope of this problem needs to be broadcast in a major way. Ironically it was a show like I mentioned above that persuaded me to take the statin in the first place. It is time to tell the "rest of the story". I think there are thousands upon thousands of people having trouble with these drugs that just do not realize what is going on...just like happened to many of us.
I did get a biopsy about 5 months after I got off Pravachol, and it showed nerve damage and lipid deposits in the muscle cells...two things that I 100% believe are statin related in my case. Even with my history it was obvious that no one was going to write "adverse statin effects" on the report. The closest it came was "possible drug toxicity". My CK tests were normal the very day I quit taking the Pravachol. Way to much importance is placed on that test in evaluating statin damage!
If you really want the biopsy, find a doctor that is willing to do it. In my case it was a Neurologist. If you are going through the doctor that prescribed the statin for you, it is in his best interest NOT to know...the doctor that prescribed the statin for me won't even DISCUSS the issue and I suspect he has had legal advice about it.

[harley2ride]

I couldn't agree more with the rest of you. Doctors at Scripps memorial told me and I quote "You are the real deal. You have statin injury". Yet in my charts, he beats around the bush and uses words like likely caused by, appears to be due to, etc. Even though he knows that I've been tested for any other possible diseases or problems. I thought the doctors oath was "First do no harm". By ignoring the cause of the problem, they are doing harm. I'm only 49yrs old, and my 70yr old father has to help me do any physical labor, as I no longer have the strength or endurance to do much. I've had to give up almost everything. Multiple doctors know this, but when will they speak up about it. The doctors at Scripps Memorial said that they had thousands of patients with similar problems, and even stated that there were probably even more out there, who had no idea why they had these pains and problems, and that there were likely many misdiagnosed people out there who also have statin injury. I wouldn't have known, if I had not done extensive research on the internet, and logged my condition on a weekly basis, taking care to list any and all symptoms, and how different things affected them. Then it took going through at least 6 doctors, before I found one who would even say it was a possibility, and that he would look into it.

[prof]

I have been luckier--The first time I described my symptoms, doc said to stop the Lipitor. But that is the exception, not the rule, with the possible exception of people literally dying of rhabdo.

Nevertheless, I doubt that doc will file a Medwatch report, which is what needs to happen. I will do so. And I hope everyone else will who has been injured by statins. It won't change anything fast, but it will add up.

Power to us!

prof

[Tulip]

Prof and others,

Recently I was chatting to a GP assistent in the train and I asked her about her experiences with statins in her practice. Her answer: "If we would report all the adverse reactions that people complain about in association with statin use, their would be no time left for our regular work."

Here in Holland physicians don't report, but patients do. I'm afraid it won't help much. Everybody who is aware that a silent holocaust (excusez le mot) is going on, is desperately waiting for Beatrice Golomb to publish the data from her independent Statin Study. I am absolutely sure these data are sobering to the medical community. She has extended her research into mitochondrial myopathy. Statin therapy seems to trigger clinical mitochondrial myopathy in people who are genetically predisposed, but who would have lived absolutely asymptmatic without statin use. In my own experience these people (middle aged or elderlý patients with myopathies that normally only manifest in childhood or adolescence) often have elevated cholesterol levels, probably because their already compromised mitochondria need more nutrients (carried by lipoproteins). I know her team is following this, so let us shout as loud as we can: Beatrice, for God's sake, publish your data!!! People are suffering and even dying in vain!

Tulip.

[harley2ride]

Hey Doc!
It would be great if we could get more exposure concerning this site and forum. I know that there are thousands (if not hundreds of thosands), who have had bad experiences with statin drugs. The more people that learn about this site, the more we can learn about the effects of statins, and hopefully find things that help with the symptoms. Maybe we could even show the public and the FDA, that these drugs are bad and should be removed from the market, before they hurt more people.

I have already notified my doctors of this site, and hopefully they will refer others to it. I've emailed everyone I can think of (CBS, NBC, ABC, wire services, American Heart Association, etc), concerning what Crestor has done to me. If more people do the same, maybe we can get somebody to actually look deeper into this problem.

[Tulip]

Hi Harley (if I may react on this one),

Of course I fully agree. The point is that journalists who dare to write about the 'lesser known side of statins', evoke outright rage in doctors, politicians, patients and even in their peers. We are really the small boys saying that the emperor is naked. I wrote an article in a national newspaper in Holland and was 'hung out' in a prime time TV show as being an irresponsible fool and a potential murderer. Spitting doctors, stupid journalists without any knowledge on the subject. No arguments, no reason, no attention at all for the hundreds of people who recognized the mentioned side effects and were asking for answers. I had the luck of having a few smart guys 'forgiving' me my 'sin', otherwise my career could have gone to hell.

The belief in cholesterol as the absolute boogyman is huge, despite the mounting evidence that it's role in the etiology of CHD is marginal at best. Doctors and health authoroties enjoy a very unhealthy (and unfounded) trust. If they say statins are safe, then critical journalists suggesting otherwise must be nuts, no matter how many 'anecdotical cases' they present.

Eventually the full truth will come out. But unfortunately the media are the biggest suppressors of this truth right now.

Cheers,

Tulip.

[Dee]

This is just the thing...this HAS been on TV, and in newspapers, and in major magazines...evidently not loud enough or often enough. There is an excellent article in Smart Money Nov. 2003. I found it on the board:

health.groups.yahoo.com/group/TakingLipitorAndHateIt/

On the evening news several months back, one of the major networks (NBC, CBS, or ABC) had a guy on that could not even get up off the floor and what was left of his muscles was hanging from his bones...you could not even recognize him from his pre-statin picture! WHAT MORE DO PEOPLE NEED?!?!? I guess more than an occasional article and 5 minutes on the evening news...OPRAH...HELLOOOO!

[prof]

I agree that it's a long way from the "media" to docs' prescribing and to what becomes general "knowledge." The media are beholden to drug ads for revenue, so they are reluctant at best.

Still, Dr. John Abramson, who wrote _Overdosed America_, has had editorials and op-eds all over the U.S. on the overuse of statins and their harm for many pts. He is on CNN, MSNBC, etc., on a fairly regular basis. He has a regular column in the Boston Herald.

Nevertheless, the "beat goes on." It will probably take more than the mountain of adverse events. It will take a mountain of scandal if and when it can be shown data has been deliberately suppressed, etc., about the dangers. And maybe a mountain of baby boomers dealing with the reality for themselves. The generation that brought us the antiwar movement may have another war to fight.

prof

[trish]

[color=blue][/color][b]NEWS FROM THE FRONT - NZ TELEVISION (briefly) TACKLES STATIN ISSUE.

A recent television item on an NZ national television news backgrounder programme discussed one or two cases of side effects with statin drugs - and followed this a couple of days later with a way people can avoid resorting to popping a pill - through diet and exercise.

I have seen a growing trend in my country for some responsible media to encourage the diet and lifestyle philosophy - also evident in a recent series on weight loss called "Downsize Me!" (as opposed to "Supersize Me!", the movie about side effects from eating junk food!).

With quarter of a million Kiwis taking statins and this being a huge meat and dairy product consuming country, the people here are really susceptible to the cholesterol scare and drug mantra and some real publicity on these drugs is badly needed here - so I'm currently working on that.

This is a country of only FOUR MILLION people, so Big Pharma has done a really fine job of convincing doctors here to potentially cripple about an eighth, a HUGE CHUNK of the population of this country - and I'm betting the majority of those are men over 30. This means an awful lot of misery is being dished out to my countryfolk and by default, their friends and relatives.

By the way, if anyone knows any way to counteract the brainwashing that has been going on here about the "familial hypercholesterolemia" (or whatever) genetic nonsense (oh please........) please let me know. That's the toughest problem in my view - and I've looked into it, it is actually BIOLOGICAL NONSENSE, it is a made up disease to market dangerous statins to relatives of a heart disease victim, including children.

Isn't it scary to think that the pilot of one's next commercial flight might be taking statins? I don't like to think about this...... Have the aviation magazines like "Flying Safety" tackled this issue I wonder?



[/b]

[sos_group_owner]

Hi All,

The WWW link for the Smart Money article, "The Lipitor Dilemma" is:
ww.n3inc.com/SmartMoneyReprint_103003Web.pdf

The main problem (as I see it).
Drug company ads in the paper and on TV seem to be a million to one.
One negative ad or article to a million ads saying how their statin is a
"wonder drug".

Example:
Tampa Tribune - today's paper (Business section) had a FULL PAGE ad
for Lipitor:
Top half... STROKE is HUGE letters and this claim...
Lipitor cuts the risk by nearly half.
In patients with type 2 diabetes and at least one other risk factor for
heart disease, LIPITOR reduced the risk of stroke by 48%.

On the bottom half of that page, they go on to write...
The results from a landmark clinical trial are in.
blah... blah... blah...
Why wait any longer? Talk to your doctor today.
blah... blah... blah...

There is even more info on the flip side of that page (taking up 1/4 of
that page). Under "Who is Lipitor for?": Adults and children over 10.

Children over 10 ??? - Bad enough they shove it down our throats, but
children on statins for their entire lives???

Under "Possible Side Effects", the typical dribble.
The last statement:
Fewer than 3 people out of 100 stopped taking Lipitor because of side
effects.

Fewer than 3 out of 100? I think not.

I'm surprised Pfizer even claims that ANYONE stops taking their
garbage drug.

I emailed the Tampa Tribune to request they run an article
(specifically the Smart Money article) to counter the Lipitor ad.
Ya' know, fair and balanced?
That would be a new concept for a newspaper.

I'll let you know if and when they respond.

Fran

[trish]

Thank you for the link. In New Zealand the only drug ads allowed on TV appear to be for paracetamol, a supermarket painkiller, and Viagra , which is interesting as impotence is one of the major side effects of statin drug use in men, so I wonder if there is a financial link between Viagra and the producers of statins.

As I see it the problem with statins in my country is that people quite simply want to believe the hype and the "genetic" connection, meanwhile eating as many steaks etc and whatever they want - basically they are lazy and want to believe in the magic bullet as a magic fixative for what they believe they are either not responsible for, or if they are, as something that can fix the problem.

I suppose it's not their fault - most people have not spent most of their lives with in an interest in health or spent 23 years as a journalist - therefore they may quite simply wish to believe that the government and global health systems have their best interests at heart. I am always gobsmacked how, even when faced with considerable information to the contrary, many people still stubbornly defend the indefensible.

What is really terrible is that statin drugs nearly completely destroyed my relationship, and when I tried to help that person I couldn't help feeling that there was a sense that I was the one that was trying to do them harm, rather than to the contrary.

Anyone else had this experience?

[sos_group_owner]

Hi Trish,

You are welcome for the "Lipitor Dilemma" link. Great piece of reading.

I'll comment on your final question, but did want to say something about statins and Viagra. Not sure if you know that Viagra is causing blindness in men.

Yep, they go to the doc, and of course everyone's cholesterol is high (according to THEIR standards), AND their BP is usually high too (according to THEIR standards) So.... they get the statins and the BP meds. Big surprise that they now have ED. So... they get Viagra.

Nice little scenario the drug companies have cooked up for all the men in the world. For men, they take statins, BP meds, blood thinners, anti-depressants (to counteract depression from statins) and usually end up asking for Viagra. The result: perfect cholesterol levels, muscle pain, muscle atrophy, cognitive decline, visual disturbances (just to name a few) and now blindness.

Am I missing something here???

How have the drug companies so brainwashed everyone???

Now that I got that out of my system, I'll respond to your final question.

Yes, statins are extremely stressful on relationships. Cognitive decline was the side effect that attacked our relationship. Once I realized the cause was Lipitor, what do we do next? The doctor doesn't believe it. So we went the route of Neurologist who ordered MRI brain scan and PET scans that came back negative; nothing wrong but Neuro still wanted hubby to take Aricept and resume statins. Bye... see ya' later!

Also went to the Neuropsychologist who said hubby definitely was in the early stages of Alzheimer's type dementia. This "assessment" report was delivered to us via standard mail. We were devastated. When I challenged his "assessment" he said, "Well, if your husband gets better, he doesn't have Alzheimer's. Those with Alzheimer's do not get better."

This was when I experienced what you describe as your partner feeling you are the cause. I insisted on all these reports trying to get to the bottom of the problem and now I had Alzheimer's dumped in my lap. I cried for days.

There are two very important people that helped me through this period. Dr Duane Graveline, our esteemed "forum host" and a very good friend who'd been through most and more of what my husband and I experienced. Her husband Mike Hope is one of the people featured in the "The Lipitor Dilemma" article.

Sharon's best advice, "Well at least you know where you stand right now, but things WILL get better... it's just a very slow process for some". And Sharon was correct. My husband is getting better but it's taken a strong commitment for me to help him. First he had to trust my judgment in challenging his doctor's (all of them). I read everything I can to "get the whole picture". And I now only rely on "trusted" sources. Dr Graveline and all the THINCS members.

THINCS website is an excellent source of info: ww.thincs.org/
As is Dr Graveline's: http://www.spacedoc.net/
And Anthony Colpo - The Omnivoire: ww.theomnivore.com/

Great info from Great dedicated people.

Fran