The Statin gun to the head

[Athena]

Hi folks, I am being pressured to start a statin right away after having high LDL cholesterol levels for a few years now. My HDL is very good and provided my labs are drawn when I am fasting, my triglycerides are within normal range as well. There seems to be a huge amount of controversy over statins and conflicting advice about them. I was told that a heart attack and stroke is imminent with my long-term diabetes and now advancing CKD. I'd love to just pop another pill in order to feel safe however I have been burnt in the past with other drugs which I was told were 'safe' but which lead to severe side effects and worsening kidney function.

Can anyone provide any advice based on their own experience or knowledge about statins?

[kickingandscreaming]

You don't state what kind of testing you had.  If it was "just the usual" lipid panel, you should consider a more advanced test such as the one described here--https://labtestsonline.org/understanding/analytes/lipoprotein-subfractions/tab/test/-- that tests for LDL particle size, e.g. VAP test.  That information is much more revealing than the generic test.

Here's a description "in English." http://www.drsinatra.com/why-your-cholesterol-test-can-lie/

[Athena]

Thanks K&S for that. I've only ever had routine regular pathology test results for lipids. I have heard about this test that analyses particle-size of LDL cholesterol, but my Primary Care Physician seems unaware of what this is when I asked him. I will have to ask my Nephrologist about this. I suspect I will soon find myself going to see a Cardiologist in order to get this sort of thing done. Is it a complicated and expensive test?

I saw a leading Neph recently & he was the one who urged me to get on a statin.

I'm just confused and overwhelmed by all all the calls to get on a statin. From what I gather anyone who sees a doctor is asked to start taking a statin. I know heart disease is very real and heart attacks & strokes happen all the time. But I also know that drugs can kill you as well.

[Michael Murphy]

In 2008 I had a heart attack, had 6 stents placed and was put on Lipitor.  Within a week I felt like I had been beat with a ugly stick.  I was taken off Lipitor and placed on a older drug called pravastatin.  No problems on that drug and my colesterol levels have been ok.  Mohave been taking it for 7 years now without a problem.

[Simon Dog]

Thanks K&S for that. I've only ever had routine regular pathology test results for lipids. I have heard about this test that analyses particle-size of LDL cholesterol, but my Primary Care Physician seems unaware of what this is when I asked him. I will have to ask my Nephrologist about this. I suspect I will soon find myself going to see a Cardiologist in order to get this sort of thing done. Is it a complicated and expensive test?

I saw a leading Neph recently & he was the one who urged me to get on a statin.

I'm just confused and overwhelmed by all all the calls to get on a statin. From what I gather anyone who sees a doctor is asked to start taking a statin. I know heart disease is very real and heart attacks & strokes happen all the time. But I also know that drugs can kill you as well.

One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study.  He tells me there are at least 17 different kind of lipids, but he can get a good idea of the profile from the simple fasting lipid test.  I know Fresenius does a fastind limid test (total, HDL, LDL and Triglicerides) on patients once a year.  He's a big believer in statins, and generally spends at least 30 minutes at each appointment lecturing me about the numbers from various studies.

He also uses different guidelines than the "recommendations", and wants his patients to keep Triglicerides under 100.

[Athena]

In 2008 I had a heart attack, had 6 stents placed and was put on Lipitor.  Within a week I felt like I had been beat with a ugly stick.  I was taken off Lipitor and placed on a older drug called pravastatin.  No problems on that drug and my colesterol levels have been ok.  Mohave been taking it for 7 years now without a problem.

Thanks Michael for that feedback. It's interesting how there can be such a wide range of individual reactions to similar cholesterol drugs. It's scary.

[kickingandscreaming]

One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study.

Sometimes, the fact that a doc is well known in the business means that he/she is more entrenched in a conventional point of view.  Like the hammer that sees everything as a nail.

Personally, I thing cholesterol is a big bogeyman that makes a lot of $$$$ for Big Pharma.  Statins do lower cholesterol,  but there is very little evidence that it furthers health or curtails mortality.  It is probably only called for in individuals with extremely high "familial" high cholesterol.  Being an essential ingredient in many essential bodily processes, I think it unwise to try to lower it unless it's extreme. The big issue is how the body oxidizes it and inflammation. The body produces and sends cholesterol to the arteries to quell the inflammation. 

I would check out Artichoke Leaf Extract before I ever tried a statin. http://www.ncbi.nlm.nih.gov/pubmed/19777605

A prospective study investigating 143 patients with total cholesterol greater than 280 mg/dL reported that patients given 1800 mg dry extract/day vs placebo over a 6-week period experienced statistically significant changes in total and LDL cholesterol. Total cholesterol was decreased 18.5% vs 8.6% and LDL cholesterol was reduced 22.9% vs 6.3% in patients using the dry artichoke extract vs placebo, respectively. Thus, dry artichoke extract was recommended to treat hyperlipoproteinemia, preventing atherosclerosis and coronary heart disease.

https://www.drugs.com/npp/artichoke.html#ref61 quoting from  Englisch W, et al. Efficacy of artichoke dry extract in patients with hyperlipoproteinemia [German]. Arzneimittelforschung . 2000;50:260-265.

Artichoke leaf extract at 1.5 g/day was found to lower serum cholesterol and triglycerides in a postmarketing survey study. 67. Kraft K. Artichoke leaf extract—Recent findings reflecting effects on lipid metabolism, liver and gastrointestinal tracts. Phytomed . 1997;4:369-378.

[Athena]

Thanks K&S for that. I've only ever had routine regular pathology test results for lipids. I have heard about this test that analyses particle-size of LDL cholesterol, but my Primary Care Physician seems unaware of what this is when I asked him. I will have to ask my Nephrologist about this. I suspect I will soon find myself going to see a Cardiologist in order to get this sort of thing done. Is it a complicated and expensive test?

I saw a leading Neph recently & he was the one who urged me to get on a statin.

I'm just confused and overwhelmed by all all the calls to get on a statin. From what I gather anyone who sees a doctor is asked to start taking a statin. I know heart disease is very real and heart attacks & strokes happen all the time. But I also know that drugs can kill you as well.

One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study.  He tells me there are at least 17 different kind of lipids, but he can get a good idea of the profile from the simple fasting lipid test.  I know Fresenius does a fastind limid test (total, HDL, LDL and Triglicerides) on patients once a year.  He's a big believer in statins, and generally spends at least 30 minutes at each appointment lecturing me about the numbers from various studies.

He also uses different guidelines than the "recommendations", and wants his patients to keep Triglicerides under 100.

Wow, 17 different kinds of lipids? That is fascinating. Sounds like I'd have to go see a cardiologist to find out more.

From what I gather, just as many people with normal levels of cholesterol have heart attacks/strokes as what those who have elevated cholesterol. There are many paths up that mountain it seems & a statin is just not going to prevent all of these attacks.

What bothers me most of all is that there seems to be little consideration of what it may mean for someone with CKD to start taking a drug like a statin. There is a some added risk of kidney failure if there are any serious side effects like muscle damage (rhabdomyolysis).

Simon, how long have you been taking a statin now yourself? I take it you started before your reached dialysis stage? It sounds like your experience has been a positive one where statins is concerned.

[Charlie B53]

My cholesterol is high and contributed to causing my triple by-pass in 08.  Since then two of the three have totally clogged up.  Fortunately it happened slow enough my body had grown colateral arteries around both blockages.

I had started taking Crestor IIRC, one of the strongest statins.  Unfortunately it caused severe muscle weakness and aches so my Dr switched me to a much 'lighter' statin.  After years on that one Dr switched  me to a mid-strength statin.  I currently take atorvastatin nightly.  So far so good.  The most important thing is diet.  Skip some of the fats and include more vegetables.

[cattlekid]

My LDL level started to elevate when I turned 39.  I was started on a low level of atorvastatin, mostly because of family history and the fact that due to my high level of HDL, my total cholesterol was over the desired limit.  At that time, I knew I had IgA nepropathy but I wasn't on dialysis yet.  I've never had any side effects that I could attribute to the statin.

I did have a minor heart attack when I was 42, after I was on dialysis for about 18 months.  One angioplasty, no stents as the vessel was so small that a stent wouldn't have fit.   At that point, I was put on Plavix for six months.  I had to go inactive on the transplant list while I was on Plavix. 

I've had my transplant now for three years and have lost 20 lbs of the 50 I put on after transplant (thanks Prednisone!).  My total cholesterol is now officially too low as of this last transplant checkup.  My atorvastatin has been cut in half.  I think the weight loss helped a little (even though I now weigh the same as I did pre-transplant).  What I think helped the most is that we now eat much less animal protein.  My husband had gastric bypass in 2014 and he can no longer tolerate red meat or pork.  We eat a little bit of chicken, turkey and fish but mostly it's fruit, veggies, some grains and dairy.  We do drink low-fat milk but we eat more full-fat cheese than is probably good for us. 

[Athena]

My LDL level started to elevate when I turned 39.  I was started on a low level of atorvastatin, mostly because of family history and the fact that due to my high level of HDL, my total cholesterol was over the desired limit.  At that time, I knew I had IgA nepropathy but I wasn't on dialysis yet.  I've never had any side effects that I could attribute to the statin.

If anyone has high HDL (but within normal range), that is healthy and is a factor that protects you against heart disease. HDL is the "good cholesterol". Some believe that having a good ratio of HDL and Trigs is what is more important than just looking at the LDL in isolation.

I don't really know, this is just what I've read.

[Athena]

One of my docs is somewhat well known in the business (Dr William Castelli) for running the Framingham heart study.

Sometimes, the fact that a doc is well known in the business means that he/she is more entrenched in a conventional point of view.  Like the hammer that sees everything as a nail.

Personally, I thing cholesterol is a big bogeyman that makes a lot of $$$$ for Big Pharma.  Statins do lower cholesterol,  but there is very little evidence that it furthers health or curtails mortality.  It is probably only called for in individuals with extremely high "familial" high cholesterol.  Being an essential ingredient in many essential bodily processes, I think it unwise to try to lower it unless it's extreme. The big issue is how the body oxidizes it and inflammation. The body produces and sends cholesterol to the arteries to quell the inflammation. 

I would check out Artichoke Leaf Extract before I ever tried a statin. http://www.ncbi.nlm.nih.gov/pubmed/19777605

A prospective study investigating 143 patients with total cholesterol greater than 280 mg/dL reported that patients given 1800 mg dry extract/day vs placebo over a 6-week period experienced statistically significant changes in total and LDL cholesterol. Total cholesterol was decreased 18.5% vs 8.6% and LDL cholesterol was reduced 22.9% vs 6.3% in patients using the dry artichoke extract vs placebo, respectively. Thus, dry artichoke extract was recommended to treat hyperlipoproteinemia, preventing atherosclerosis and coronary heart disease.

https://www.drugs.com/npp/artichoke.html#ref61 quoting from  Englisch W, et al. Efficacy of artichoke dry extract in patients with hyperlipoproteinemia [German]. Arzneimittelforschung . 2000;50:260-265.

Artichoke leaf extract at 1.5 g/day was found to lower serum cholesterol and triglycerides in a postmarketing survey study. 67. Kraft K. Artichoke leaf extract—Recent findings reflecting effects on lipid metabolism, liver and gastrointestinal tracts. Phytomed . 1997;4:369-378.

Many thanks again K&S. Yes, that is the million dollar question - whether lowering LDL through a drug will do anything to promote health or prevent heart disease. I am looking into any CKD-safe non-drug alternative to lowering cholesterol. I have my naturopath looking into it. There are other things like red rice yeast extract (?) that can lower cholesterol which comes from traditional chinese medicine. There is also non-flush niacin as well.

The other thing that's a bit suspect to me is that they want patients to have extremely low LDL cholesterol, much lower than what normal healthy people may have their cholesterol levels at. That always alarms me even further. If I can just get my LDL to be in the upper normal healthy limit or just slightly above normal through non-drug means, i'd be more than happy!

[Simon Dog]

Simon, how long have you been taking a statin now yourself? I take it you started before your reached dialysis stage? It sounds like your experience has been a positive one where statins is concerned.

I've been on statins for over 20 years, and just celebrated by 4th D anniversary.    One of my issues is low HDL which responded only to Niacin (which caused some other issues so I had to discontinue it), so the approach has been to drive down total cholesterol and triglicerides.    I have also become a pesco pollo vegetarian at the same time I started on a statin.

[OneForTheBirds]

My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.

[MooseMom]

Hmmm....well, all I can add is details of my own personal experience.  Take it or leave it!

When I was first diagnosed with FSGS back in 1992, all I was told was that I'd probably end up needing treatment for hypertension, when, eventually, I did.  No one ever told me about any link between CKD and cardiovascular disease or high blood lipids.

FF to 2004.  I had moved back to the US and went for a routine physical for insurance purposes.  My cholesterol was 550 and my triglycerides were 2100.  Yes, you read that right.  My doc said he had never seen numbers so high in someone who was not diabetic.

I was immediately referred to the neph who put me on Crestor and Tricor.  The Crestor caused me to break out into a skin rash, but boy, did it bring down my cholesterol!  So, I was switched to pravastatin (which someone else mentioned in this thread), and that has done the trick for me all of these years.  I still take Tricor (well, I take the generic, fenofibrate), and that has worked very well for me, too.

I've always eaten healthily and enjoyed exercise, so those initial high numbers had us all shocked!

Bottom line is that for me with my history of severe kidney disease, those drugs worked and, in my humble opinion, were necessary...FOR ME.  My numbers are still great, and I have not had any side effects.  I am grateful for these medications.

[Simon Dog]

My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.

Which medical board certifications does your husband have?

[Michael Murphy]

But there is a correlation between high lipids and heart attacks.

[Charlie B53]

Prevastatin is the low strength statin they had me one after I reacted badly to the Crestor, the high strength statin.  I don't remember it's generic statin name.

Currently one the mid-strength one atorvastatin.   I don't pay enough attention to my numbers.  Dr's are paid to do that.

Realilstically, I am Blessed to have lives this long.   I never expected to live past 30.   I had the attitude of many Vets.  Live fast, die young, leave a good looking corpse.   Surprisingly, I ain't so fast no more, aging and all that physical abuse of this body has taken quite a toll on the joints and muscles.   Many have been broken, torn, scarred, and are near constant reminders that I am NOT Immortal after all.

[cattlekid]

I am really intrigued about the Tricor.  After my heart attack in 2012, the cardiologist who saw me in the hospital (I never had a cardiologist before that) wanted me to go on Tricor.  I checked with my nephrologist, who about dropped the phone and said there was no way he would allow me to take Tricor.  I am wondering if it is because of my particular kidney disease (IgA nepropathy) or that my trygliceride levels weren't really sky high. 

I was immediately referred to the neph who put me on Crestor and Tricor.  The Crestor caused me to break out into a skin rash, but boy, did it bring down my cholesterol!  So, I was switched to pravastatin (which someone else mentioned in this thread), and that has done the trick for me all of these years.  I still take Tricor (well, I take the generic, fenofibrate), and that has worked very well for me, too.

I've always eaten healthily and enjoyed exercise, so those initial high numbers had us all shocked!

Bottom line is that for me with my history of severe kidney disease, those drugs worked and, in my humble opinion, were necessary...FOR ME.  My numbers are still great, and I have not had any side effects.  I am grateful for these medications.

[MooseMom]

Oh, that's interesting, cattlekid, because I've just looked up Tricor, and it DOES say that you shouldn't take it if you have severe kidney disease.  Hmmm....  And it was my neph who prescribed it!  AND my tx neph knows I still take it and have taken it for over a decade.  No one has said anything about it.  But then again, my triglycerides WERE sky high.  Makes me wonder.  Well, so be it.

[Athena]

Oh, that's interesting, cattlekid, because I've just looked up Tricor, and it DOES say that you shouldn't take it if you have severe kidney disease.  Hmmm....  And it was my neph who prescribed it!  AND my tx neph knows I still take it and have taken it for over a decade.  No one has said anything about it.  But then again, my triglycerides WERE sky high.  Makes me wonder.  Well, so be it.

Moosemum, you can't undo the past and you did the very best you could at the time with all the information and advice you were given. You are a pro-active model kidney patient as far as I'm concerned.

I am however a novice to statins and am just doing the prudent thing for myself which is thoroughly investigating this drug. There are alarm bells ringing for both taking them AND not taking them, in truth. I think I will lose in both situations, the question is which one will have less net loss. I've never been someone who's been attracted to gambling but being a medical patient is essentially about taking a gamble on what the doctors tell us is safe and good for us will be exactly that.

For example, I have only witnessed an accelerated loss of kidney function since I've started on an ACE inhibitor a few years ago. I am starting to think that maybe my dosage needs to be reduced. From what I gather once someone is severe enough, ACE & ARBs are contraindicated?

I have also had major illness and an AKI from taking a nasty hormone drug (progesterone) almost 2 years ago. This has left me very mistrustful of pharmaceutical drugs in general.

[MooseMom]

Athena, I understand your dilemma and wish I could tell you what the right choice for you would be.  You are absolutely correct in having serious doubts about any new medication your docs are suggesting you take, and you are indeed very wise to find every bit of information you can get so that you can make an informed choice.  It doesn't sound like you have to make an immediate decision, so it is good that you are taking the time to find out as much as possible.

When is your next appointment?  Can you discuss your concerns with your cardiologist?  It is amazing how ignorant a specialist can be about matters outside his/her specialty.  Could your cardiologist speak directly with your neph?  It is very disconcerting that one doc says you need statins while another doc says, "No way!".  And the patient is caught in the middle.  I don't envy you.

I remember your experience with AKI induced by hormone treatment, so no wonder you are mistrustful! 

CKD brings all sorts of related maladies to the table, including hypertension and high lipid levels that simply cannot be treated solely by "lifestyle changes".  Sometimes we really do need these drugs.  But that doesn't mean they are ideal in all ways.  We really are stuck between a rock and a hard place.

Please do let us know what you and your neph/cardiologist finally decide to do.  I'm rooting for you!

[OneForTheBirds]

My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.

Which medical board certifications does your husband have?

He has a PhD and analyses research data. One of the projects he worked on was statins, with a cardiologist.

[Simon Dog]

My husband says there is no evidence that taking statins was of any benefit unless you already had a heart attack.

Which medical board certifications does your husband have?

He has a PhD and analyses research data. One of the projects he worked on was statins, with a cardiologist.

Interesting.   I had a long talk with the MD who ran the Framingham Heart Study for many years and he claims to have data that supports the correlation between statin lowered cholesterol and heart attack rate.   So, I guess the experts just can't agree.

[Athena]

Athena, I understand your dilemma and wish I could tell you what the right choice for you would be.  You are absolutely correct in having serious doubts about any new medication your docs are suggesting you take, and you are indeed very wise to find every bit of information you can get so that you can make an informed choice.  It doesn't sound like you have to make an immediate decision, so it is good that you are taking the time to find out as much as possible.

When is your next appointment?  Can you discuss your concerns with your cardiologist?  It is amazing how ignorant a specialist can be about matters outside his/her specialty.  Could your cardiologist speak directly with your neph?  It is very disconcerting that one doc says you need statins while another doc says, "No way!".  And the patient is caught in the middle.  I don't envy you.

I remember your experience with AKI induced by hormone treatment, so no wonder you are mistrustful! 

CKD brings all sorts of related maladies to the table, including hypertension and high lipid levels that simply cannot be treated solely by "lifestyle changes".  Sometimes we really do need these drugs.  But that doesn't mean they are ideal in all ways.  We really are stuck between a rock and a hard place.

Please do let us know what you and your neph/cardiologist finally decide to do.  I'm rooting for you!

Saw my Neph today and he has given me 3 months to find a way to lower my cholesterol. If it is not lowered, then I need to go on a statin quicksmart! He even raised his voice and told me off for putting it off. He told me that I will either lose my legs or have a heart attack or stroke in the near future. So, I've had another gun raised to my head today! (Does anyone know why I could possibly lose my legs due to high cholesterol? I've never head of such a thing before).

So I really feel pressured and on a tight deadline after today.

I have my Chinese herbal naturopath now investigating what may be kidney-safe cholesterol lowering herbs for me. I have to admit though, it feels like it's going to be a losing battle. I really need to know now whether there is any non-drug alternative now as a matter of urgency.

I'm tired.

I don't have a cardiologist and no one has ever suggested I see one.

I also received a lecture today about the perils of calcium as well and what it may be doing inside my body without showing up in abnormal serum calcium levels. I was told to not take any calcium supplementation whatsoever, which I don't of course. I don't know why I was warned about calcium today. I asked him about the whole approaching menopause deal and how that might pose as another threat to my renal health. He replied that it's another threat altogether but I should be focused on the renal threat concerning calcium.

I am so tired.

If anyone can offer me any advice at all, I'd be very grateful.