Statin Wars - British Style!

[youbet]

I'm saying that the system is broken if a drug that negatively affects "a whole lot of people" gets reported as 1 in 20 thousand.

Just amplifying on the difficulty of understanding all the numbers and of differentiating anecdotal examples from statistical terms such as "a whole lot of people," I'll mention that the 1 in 20 thousand refers to folks who have muscle and kidney damage due to the statin. Not just to folks who complain of muscle soreness or weakness to some extent or the other while on the statin.


from the Mayo site and my earlier post:

Muscle aching/stiffness
5 in 100 patients
(some need to stop statins because of this);


Muscle and kidney damage
1 in 20,000 patients
(requires patients to stop statins).

I'm lost in the whole thing. And the fact that I'm simultaneously sketchy on the "1 in 20.000" vs. "5 in 100" numbers and folks including terms like "a whole lot of people" with the first group doesn't help.

As I mentioned in an earlier post, blood thinners like Xarelto seem to have similar positions to statins in the drug hierarchy: small percentages of absolute improvement vs. some folks experiencing negative side effects or having traumas. The difference being that statins sometimes seem to be prescribed for folks having few/no symptoms while the blood thinners seem to be focused on folks with an observed issue.

I'm not defending statins, their inventors/manufacturers or the docs who prescribe them in any way. But I am trying to understand the difference between inconveniences such as temporary muscle soreness or a craving for carbs resulting in weight gain and permanent damage to my body. Holding up some members of the "5 in 100" group as members of the "1 in 20,000" group doesn't help.

What a pita this all is!

 

[sengsational]

Sounds like 5% of statin takers somehow came to quit taking the drug before they got to the serious damage stage. As a prospective user of a statin drug, I think that the 1 in 20 thousand statistic is harmful rather than helpful, especially if that's the only statistic I've been exposed to. How quickly would you bail taking a statin if you thought that only one in 20 thousand had a problem? You might attribute it to something else that changed since what you understood is that it's unlikely to cause a side-effect.

 

[youbet]

Sounds like 5% of statin takers somehow came to quit taking the drug before they got to the serious damage stage. As a prospective user of a statin drug, I think that the 1 in 20 thousand statistic is harmful rather than helpful, especially if that's the only statistic I've been exposed to. How quickly would you bail taking a statin if you thought that only one in 20 thousand had a problem? You might attribute it to something else that changed since what you understood is that it's unlikely to cause a side-effect.

Sounds like you've got the numbers supporting a decision that, for you, statins are never gona happen, no matter what! Stick to your guns! You don't want to become one of those "a whole lot of people" you mentioned earlier!

 

[bmcgonig]

Well, it sure sounds like he is fully capable of and is making an informed decision. It sounds like I misinterpreted your comments when I formed the impression that the negatives of the side effects outweighed the positives of the treatment. Apparently, the MD and your brother agree that "it's worth it," so to speak.

This discussion is so interesting to me because I've been on a low dose statin for over ten years. Never any side effects that I've noticed or that have shown up in blood work. I started with lipid readings at the high end of the OK range and they have improved considerably from there. I don't detect any muscle issues and I've intentionally lost 65 lbs over the past two years so no weight gain issues either.

When the "anti-statin" discussions became common, I started questioning my family doc (I don't see the cardiologist who put me on atorvastatin anymore). Doc is in favor of staying on the statin but said it is strictly up to me. We decided on a compromise of reducing my dosage from a low 10mg to a very low 5mg and watching the blood work for results. Then, very recently, I developed A-Fib making the decision much more interesting! With the OK of the cardiophysiologist I'm now seeing for the A-Fib, we're going ahead with the 10mg to 5mg reduction and we'll see what happens with the current excellent lipid numbers.

BTW, a similar discussion could be had about blood thinners. I've been put on Xarelto since the A-Fib was discovered to reduce my risk of stroke and heart attack. This is a very common move that I'm researching. But, like statins, the benefit is small and some people do wind up with issues (or traumas) related to the blood thinner. So, I'm noodling that one too.

Best of luck to your brother. And, BTW, I don't doubt for an instant that his side effects are real and bothersome. It's just that since anecdotal examples seem to pop up so commonly in discussions vs broader based statistics, it makes it all the more difficult to keep things in perspective when trying to figure things out.........

The AFib situation isn't quite as controversial as far as I can tell. Not many loud medical voices against blood thinners. Using the CHADS-VASc scores if you have a 0 then no blood thinners, a 1 then "discuss with your doc" and 2 or more definitely take the blood thinner. If I had a 2 I'd definitely take them. There is some controversy whether the CHADS-VASc scoring system is as useful as other systems like the ATRIA or the Intermountain One. Hopefully they will be sorted out someday too.

 

[youbet]

The AFib situation isn't quite as controversial as far as I can tell. Not many loud medical voices against blood thinners. Using the CHADS-VASc scores if you have a 0 then no blood thinners, a 1 then "discuss with your doc" and 2 or more definitely take the blood thinner. If I had a 2 I'd definitely take them. There is some controversy whether the CHADS-VASc scoring system is as useful as other systems like the ATRIA or the Intermountain One. Hopefully they will be sorted out someday too.

Well, it's "controversial" to me. But I do appreciate your inputs and you make a good point.

My CJADS-VASc score is "1." My family doc handed me a bottle of sample Xarelto as soon as he finished looking at my ECG. The cardiophysiologist agreed when I saw him on referral a week later having done Holter and echocardiogram tests.

What is controversial to me is that the absolute improvement in my probability of stroke is only about 2%. Yet, I have to manage my life as a person taking an anticoagulant. I'm just not sure the payback is there.

OTOH, there are other paths to follow involving procedures that attempt to set the heart pace back to normal. All seem to involve risks. If successful, I could get off the anticoagulant.

The difference between statins and anticoagulants seems to be that statins are sometimes prescribed for people without poor lipid readings or other predictors such as smoking, obesity, family history, etc. Whereas anticoagulants seem to only be prescribed for folks with an issue such as A-Fib.

I certainly don't mean to imply the two have exactly the same issues. But both generate small absolute improvements and have possibilities for negative side effects.

At least that's how I see it at this stage of my research. I'll be scheduling a second opinion with one of the local university hospitals that has an A-Fib clinic and see what they have to say. I'd really rather not be on an anticoagulant.

 

[sengsational]

Sounds like you've got the numbers supporting a decision that, for you, statins are never gona happen, no matter what! Stick to your guns! You don't want to become one of those "a whole lot of people" you mentioned earlier!

I'm not sure how you arrived at that conclusion about my case, since we were talking about the general case and statistics. For me, statins happening would depend upon quite a lot, not the least of which would include having a reasonable estimate of the incidence of side-effects, what those side-effects were, and how damaging they could be. If someone who examines the problem from that perspective precipitates the conclusion to be a "never gona happen" person, well, that's understandable, I suppose, but I'd call it a person who's just trying to be careful.

 

[threegoofs]

Well, it's "controversial" to me. But I do appreciate your inputs and you make a good point.

My CJADS-VASc score is "1." My family doc handed me a bottle of sample Xarelto as soon as he finished looking at my ECG. The cardiophysiologist agreed when I saw him on referral a week later having done Holter and echocardiogram tests.

What is controversial to me is that the absolute improvement in my probability of stroke is only about 2%. Yet, I have to manage my life as a person taking an anticoagulant. I'm just not sure the payback is there.

OTOH, there are other paths to follow involving procedures that attempt to set the heart pace back to normal. All seem to involve risks. If successful, I could get off the anticoagulant.

The difference between statins and anticoagulants seems to be that statins are sometimes prescribed for people without poor lipid readings or other predictors such as smoking, obesity, family history, etc. Whereas anticoagulants seem to only be prescribed for folks with an issue such as A-Fib.

I certainly don't mean to imply the two have exactly the same issues. But both generate small absolute improvements and have possibilities for negative side effects.

At least that's how I see it at this stage of my research. I'll be scheduling a second opinion with one of the local university hospitals that has an A-Fib clinic and see what they have to say. I'd really rather not be on an anticoagulant.

Well, you might want to reconsider Xarelto. Apixaban is probably a much better choice. Less bleeding, likely more effective.

But the low risk of stroke with AF is very real, and the types of strokes that come from AF are often really, really devastating ones. Chads-vasc of one is low risk, but the risk of bleeds with the new anticoagulants is lower than warfarin (at least with the ones other than Xarelto).

But if you’be got a good EP, ablation might take care of the issue anyway.

 

[Alan]

Well, you might want to reconsider Xarelto. Apixaban is probably a much better choice. Less bleeding, likely more effective.

But the low risk of stroke with AF is very real, and the types of strokes that come from AF are often really, really devastating ones. Chads-vasc of one is low risk, but the risk of bleeds with the new anticoagulants is lower than warfarin (at least with the ones other than Xarelto).

But if you’be got a good EP, ablation might take care of the issue anyway.

My GP wanted to immediately put me on anticoagulants as soon as I was diagnosed with AFib but I talked her out of it until I had been referred to the arrhythmia unit at our local hospital. The experts in AFib there said that with all other factors in my favor that an anticoagulant was not needed at this stage.

After tests and monitoring Ablation was recommended and that did need blood thinners to be taken 4 weeks before and 3 months after. Apixaban was prescribed and it was so easy to use. One blood test before taking it then no other testing needed, 1 tablet morning and evening taken with food. The Ablation, last October, was successful so no medications at all now, with 6 month visits to check all is well. Apparently corrected AFib still adds 1 to the Chads-2 score so at age 65 we will discuss blood thinners again, although I still hope, from what they say, to not need blood thinners until 70 or even 75 if my otherwise excellent health continues.

 

[NW-Bound]

Now I'm wondering if some of the financial advice I've taken from this forum is BS or crap.

BS is crap.

BS comes from bulls. Crap comes from..., er, forget it.

About statins, I am fortunate to have no need for it so far.

I am reading this thread just to learn what it is all about. Interesting subject.

 

[bmcgonig]

Well, it's "controversial" to me. But I do appreciate your inputs and you make a good point.

My CJADS-VASc score is "1." My family doc handed me a bottle of sample Xarelto as soon as he finished looking at my ECG. The cardiophysiologist agreed when I saw him on referral a week later having done Holter and echocardiogram tests.

What is controversial to me is that the absolute improvement in my probability of stroke is only about 2%. Yet, I have to manage my life as a person taking an anticoagulant. I'm just not sure the payback is there.

OTOH, there are other paths to follow involving procedures that attempt to set the heart pace back to normal. All seem to involve risks. If successful, I could get off the anticoagulant.

The difference between statins and anticoagulants seems to be that statins are sometimes prescribed for people without poor lipid readings or other predictors such as smoking, obesity, family history, etc. Whereas anticoagulants seem to only be prescribed for folks with an issue such as A-Fib.

I certainly don't mean to imply the two have exactly the same issues. But both generate small absolute improvements and have possibilities for negative side effects.

At least that's how I see it at this stage of my research. I'll be scheduling a second opinion with one of the local university hospitals that has an A-Fib clinic and see what they have to say. I'd really rather not be on an anticoagulant.

"My CJADS-VASc score is "1." My family doc handed me a bottle of sample Xarelto as soon as he finished looking at my ECG. The cardiophysiologist agreed when I saw him on referral a week later having done Holter and echocardiogram tests. "

Might it be that your AFib burden prompted them to ignore the CHADS-VASc score being low risk and immediately recommend anticoagulation? The main stroke cause is by stasis of the blood around the left atrium appendage while you're in AFib. That blood clots and then that clot can be released and on its way when you go back into normal rhythm. If you're regularly in and out of rhythm then that might be cause for more conservative approach?

If your AFib is what they call paroxysmal and sporadic then they tend less towards anticoagulation. If it's persistent then they tend to go for anticoagulation straight away. At least that's how I interpret it.

 

[JoeWras]

Maybe you know, I sure don't...if a drug says "here's a side effect that you might have by using this drug", right there in black and white....can you then turn around and sue the manufacturer if it happens to you? Doesn't sound logical, but maybe there's case law. Seems like if any corporations were capable of keeping themselves from getting sued, it would be the pharma companies.

I don't know. I do know, courtesy of TV advertising, that the lawyers are cooking up a class action against Xaralto. There are other well known class action cases for bad drugs (diet drugs?) too, but they are off the market.

Xarelto is the interesting one since it is on the market still. Ironic it has been woven into this discussion.

There were some cases of class action on the still marketed statins in the past, but I'm not sure where they went. Baycol (15 years ago) was removed because of rhabdo, and there were lawsuits. Baycol had at least 31 documented deaths (according to the FDA).

 

[JoeWras]

A few things come to mind in this discussion.

1) Although the war on heart disease is not won, it is having an effect. When I was a kid, heart attack survivors didn't seem to last. Of course, it is more than statins. Smoking and blood pressure control are huge. However, statins are part of the mix on previous heart attack victims. People are surviving and thriving. My uncle is a good example.

2) The controversy is on statin use in "low risk" people without previous heart attack. What does this low risk mean? Is some web calculator the arbiter of my risk? Or is it a discussion with my doctor?

3) TV advertising of drugs in the USA is a terrible idea. It wasn't always this way. Add lawyers to that too.

One side of my family suffered devastating effects of CAD. MI, stroke, death. You name it. Not pretty. Most had high BP and triglycerides along with high cholesterol.

The other side seems to shrug off their high cholesterol and had no heart events until well past age 85. Even then, it wasn't MI. They also had good BP and triglyceride readings.

What did I inherit? My BP and triglyceride readings are OK. My HDL is high.

This is what I need to decide. Is the slight reduction of risk of stroke or MI worth it? Well, after seeing my grandfather languish in a facility for years, it is. I'm working with my doctor closely on the statin use. Actually waiting for results today and possibly change plan going forward.

 

[threegoofs]

"My CJADS-VASc score is "1." My family doc handed me a bottle of sample Xarelto as soon as he finished looking at my ECG. The cardiophysiologist agreed when I saw him on referral a week later having done Holter and echocardiogram tests. "

Might it be that your AFib burden prompted them to ignore the CHADS-VASc score being low risk and immediately recommend anticoagulation? The main stroke cause is by stasis of the blood around the left atrium appendage while you're in AFib. That blood clots and then that clot can be released and on its way when you go back into normal rhythm. If you're regularly in and out of rhythm then that might be cause for more conservative approach?

If your AFib is what they call paroxysmal and sporadic then they tend less towards anticoagulation. If it's persistent then they tend to go for anticoagulation straight away. At least that's how I interpret it.

Nope. The indication for anticoagulation is irrespective of AF burden. Paroxysmal AF has the same risk of stroke as persistent/permanent AF.

For asymptomatic patients, it’s a bit more controversial, but there’s no question that runs of 24 hrs of AF need treatment, no matter how infrequent, and some data suggests that runs of 6 minutes are enough to confer significant stroke risk.

 

[IBWino]

About statins, I am fortunate to have no need for it so far.

I am reading this thread just to learn what it is all about. Interesting subject.

Ditto. I've had elevated cholesterol (in the 200 -250 range) for >20 years now, but LDL/HDL and triglicerides/HDL ratios have always been good. My Doctor has mentioned statins a couple of times, but hasn't pushed me into taking them (so far).

 

[bmcgonig]

Nope. The indication for anticoagulation is irrespective of AF burden. Paroxysmal AF has the same risk of stroke as persistent/permanent AF.

For asymptomatic patients, it’s a bit more controversial, but there’s no question that runs of 24 hrs of AF need treatment, no matter how infrequent, and some data suggests that runs of 6 minutes are enough to confer significant stroke risk.

Yeah. Not really. The indication is the same but no experienced EP follows the indication blindly. Burden matters. See below. Thus I suggested burden might be the reason the EP decided to automatically go for anticoagulation in his case even though his CHADS-V was only 1.

There are other times the indication isn't followed. E.g., there's no accounting for someone having an ablation. The indication is still for using the same CHADS-VASc scoring system after it even though studies show a marked decrease in potential strokes. Some EPs will recommend coming off AC even with a score of 2.


https://jamanetwork.com/journals/jamacardiology/fullarticle/2681476


Key Points

Question*:*Is the burden of atrial fibrillation associated with the risk of ischemic stroke and other thromboembolism in paroxysmal atrial fibrillation?

Findings :**In a cohort study of 1965 adults with paroxysmal atrial fibrillation, a greater burden of atrial fibrillation (≥11%) on 14-day noninvasive, continuous electrocardiographic monitoring was associated with a significantly higher rate of thromboembolism while not taking anticoagulation vs a lower burden.

Meaning*:*Greater atrial fibrillation burden is associated with a higher risk of ischemic stroke independent of known risk factors in adults with paroxysmal atrial fibrillation; knowing the burden of atrial fibrillation may assist with shared decision making for stroke prevention strategies.

 

[eytonxav]

What do our experts think about some of the Boston Heart blood tests? For example:https://bostonheartdiagnostics.com/...duced-myopathy-slco1b1-genotype-test/?tcat=21

 

[mickj]

What do our experts think about some of the Boston Heart blood tests? For example:https://bostonheartdiagnostics.com/...duced-myopathy-slco1b1-genotype-test/?tcat=21

//sarcasm// The experts don't have the time to argue with statin deniers.

 

[Rianne]

Does low dose statins eliminate side effects? DSI cholesterol 350 (she's a tiny person and not overweight at all). Her HDL were lower < 40 and LDL normal. Her Dr in Italy (she lives there), put her on 10 mg statin for 3 months. I think that's a child's dose.

She had no side effects, cholesterol went to 230 and now, HDL > 65. She will stay on low dose statins.

 

[JoeWras]

Does low dose statins eliminate side effects? DSI cholesterol 350 (she's a tiny person and not overweight at all). Her HDL were lower < 40 and LDL normal. Her Dr in Italy (she lives there), put her on 10 mg statin for 3 months. I think that's a child's dose.

She had no side effects, cholesterol went to 230 and now, HDL > 65. She will stay on low dose statins.

Eliminate? Maybe not. Depends on your genes. Reduce? Yes, studies show that it does.

Working with my doc, we decided on a 3x per week regime. I'll know how effective in 8 weeks.

Do a search on "alternate day statin" and you'll get access to many studies on the subject, including that versus daily low dose. There are also studies done on 1x per week.

Most show good efficacy on the lipid numbers, and reduction in side effects. The problem is that the studies are not long term enough to show if they stop or slow artery disease.

 

[eytonxav]

//sarcasm// The experts don't have the time to argue with statin deniers.

I am not a statin denier and this is not arguing against the use of statins. However, the referenced test does look for a gene that could explain why muscle soreness from statin use may be more likely in some individuals.

 

[irishgal]

If you like and wish to keep your mitochondria stay away from statins.

 

[Koolau]

I am not a statin denier and this is not arguing against the use of statins. However, the referenced test does look for a gene that could explain why muscle soreness from statin use may be more likely in some individuals.

Since taking a high-dose statin, I have not noticed any change in muscle soreness. I've always had some muscle soreness and at my age, I guess I would expect some. That said, statins do not seem to give me this particular side effect.

One thing I always wonder about when folks "complain" about side effects (no offense intended here): Isn't it likely that something so "powerful" as to change an otherwise "body regulated" blood component WOULD be EXPECTED to cause side effects? There is an old saying that "show me a drug with out side effects and I'll show you a drug with out therapeutic effect."

Not taking a side here, just suggesting that side effects are par for the course with any drug. I've heard it said that aspirin could not become a drug today if it went through the rigorous trials (especially clinical trials) required of today's "new" drugs. It simply has too many side effects for its benefit. Yet it has been used (as a plant extract) and then as a "pure" drug for hundreds of years - and remains in use today, even though it can cause death as a (very, very rare) side effect. Just sayin', so YMMV.

 

[Potstickers]

So... With Atorvastatin (nee: Lipitor) now reaching a price of zero, yes $0, in America, yes, in America, what is the incentive for docs to be pushers? Is the investment in generic companies that lucrative? Is "big generic" the next big thing? Mylan's stock price has been terrible over the last 5 years. Mylan is a huge maker of atorvastatin.

Now add Rosuvastatin to the mix (nee: Crestor). Another generic costing the price of a latte for 1 month supply.

I'm missing the kickback or incentive being talked about in this thread. Help me out.

What was the incentive for the American Diabetes Association & registered dieticians to push a high carb diet? And yet, they did and still do to a great extent. As someone who's been on the receiving end of terrible dietary advice (via participation in a 40+ year longitudinal community heart disease study) beginning in the early 1970's from research physicians and dieticians (use corn oil, stick margarine is better than butter, drop the eggs, most definitely eliminate the bacon, have a glass of OJ with breakfast, cereal is the way to start the day, pasta makes a great dinner, sweetened yogurts are great, milk needs to be lowfat, shrimp is bad because it has triglycerides, beef is worse because it has cholesterol...) I'm pretty comfortable at this point in questioning much of what passes for religious belief among health professionals. I don't ascribe bad intent to any of these folks. I think the science is more complicated than they understood and they really failed to understand how their advice was actually creating the circumstances where T2 diabetes would flourish.

Personally, I'm most interested in the effect interventions have on all-cause mortality and morbidity. If a statin keeps me from having an MI but raises my blood sugar enough that I end up diabetic with retinopathy that leaves me blind and with bits chopped off due to gangrene, is that really a win? If I die from an amputation related to that diabetes, do we count that as a win for the statin because I didn't die from an MI -- or as collateral damage from the statin?

 

[eytonxav]

My PCP changed my statin from simvastatin to rouvastatin late last year as my ldl was slightly above 70 and he wanted it lower. The rouvastatin did lower it quite a bit. Around that same time I also changed up my gym workout program. I am now getting more muscle soreness than I remember from the earlier months in 2018 and am not sure whether any of this soreness can be attributed to the rouvastatin. I suppose I will need to experiment by going back on simvastatin and see what happens. I really do not want to change the workout program as its yielding other benefits that I do not want to lose.

Also, I had been on simvastatin for ~ 20 years with no noticeable problems, although I did develop diabetes about 10 years ago. I never associated that with taking a statin, thought it was poor diet, but I suppose there are not absolutes in assigning blame.