bicuspid aortic valve and statins

[Karen]

I have been visiting this site for a week or so. I'm impressed with how knowledgable so many of you are on your heart issues. I am hoping that someone can shed some light on one of the questions that I have after my 2nd annual visit with the cardiologist...

Although I have always had a heart murmur and had coarctation of the aorta repair surgery done in 1967, I had no idea that I had a bicuspid aortic valve until a year ago. In January of last year, I was having chest pains. I went to my PCP and the diagnosis was costochondritis. However, since no one had "looked at" my heart for over 30 years, he advised doing some tests on my heart. The results of those tests warranted follow-up with a cardiologist. The first thing the cardiologist said to me about the tests was that I had a bicuspid aortic valve with "mild" stenosis and that one day I would have open heart surgery. I generally take "things" pretty well in stride, I think. But since the costochondritis stuff can feel very much like a lung or heart problem rather than arthritis, it has made it easy to be more anxious about this than the situation probably warrants. (It's been especially easy to be a little stressed about these issues because of the media hype about Vioxx and Bextra. I've taken Voltaren since September, when Vioxx was pulled off the market, for the arthritis in my chest, and it's doing a good job -- aside from always being on the lookout for symptoms of stomach ulcers etc.)

Although my cholesterol "couldn't have been medicated to be so good," my cardiologist started me on Lipitor. He said that within only months of my visit with him, cardiologists were beginning to prescribe statins for bicuspid aortic valve patients with the expectation that the drug would delay the need for valve replacement surgery. When I saw him a couple of weeks ago, he said the echo showed virtually no change from the year before. He was "surprised," in fact, that things looked so unchanged.

My question is this: Is the progression of stenosis in these valves somewhat consistent and predictable? I will admit that I have felt much calmer about the situation, having been told that surgery is still "at least" 10 years away, in his opinion. My exercise tolerance is good. My chest pains seem totally consistent with the arthritis stuff, so I am feeling much less anxiety about the road ahead. I just wonder if the situation could likely change dramatically and unexpectedly over the next few years, or if I can be fairly confident that any stenosis progression would be gradual and predictable?

Also, has anyone else been put on statin therapy or heard about this "new" theory in the heart community? The more I hear about statins, the fewer problems I have with taking Lipitor. My cholesterol is WAY low now. But there may be even other benefits from taking statins, so it's an interesting avenue, I believe.

This has been very long... I look forward to your thoughts on the subject.

Karen

 

[PJmomrunner]

Hi Karen:

Welcome. I am also a relative newbie to the site with a BAV and an ascending aneurysm. I have recently spent a lot of time perusing the medical literature online and have come across studies about the use of statin drugs to stop the progression of stenosis. I don't know if their use is commonplace, but there are certainly a number of studies that support their use, at least in cases of hyperlipidemia. I personally have "no significant stenosis," and have good cholesterol levels; no one has suggested I be put on a statin, but I do follow a diet that is purported to achieve similar results. My husband's on the Ornish Diet and I figure it can't hurt to keep my own pipes clean!

I would presume you have been carefully screened for aneurysm since the coart repair? Sitting where I am, here in the waiting room, I can't help but wonder if chest pain in a patient with BAV originates with an aneurysm. Of course, if that has been ruled out, I'll trade diagnoses with ya!?

Congrats on living somewhere that offers piano lessons in the schools. That's fantastic.

P. J.

I have been visiting this site for a week or so. I'm impressed with how knowledgable so many of you are on your heart issues. I am hoping that someone can shed some light on one of the questions that I have after my 2nd annual visit with the cardiologist...

Although I have always had a heart murmur and had coarctation of the aorta repair surgery done in 1967, I had no idea that I had a bicuspid aortic valve until a year ago. In January of last year, I was having chest pains. I went to my PCP and the diagnosis was costochondritis. However, since no one had "looked at" my heart for over 30 years, he advised doing some tests on my heart. The results of those tests warranted follow-up with a cardiologist. The first thing the cardiologist said to me about the tests was that I had a bicuspid aortic valve with "mild" stenosis and that one day I would have open heart surgery. I generally take "things" pretty well in stride, I think. But since the costochondritis stuff can feel very much like a lung or heart problem rather than arthritis, it has made it easy to be more anxious about this than the situation probably warrants. (It's been especially easy to be a little stressed about these issues because of the media hype about Vioxx and Bextra. I've taken Voltaren since September, when Vioxx was pulled off the market, for the arthritis in my chest, and it's doing a good job -- aside from always being on the lookout for symptoms of stomach ulcers etc.)

Although my cholesterol "couldn't have been medicated to be so good," my cardiologist started me on Lipitor. He said that within only months of my visit with him, cardiologists were beginning to prescribe statins for bicuspid aortic valve patients with the expectation that the drug would delay the need for valve replacement surgery. When I saw him a couple of weeks ago, he said the echo showed virtually no change from the year before. He was "surprised," in fact, that things looked so unchanged.

My question is this: Is the progression of stenosis in these valves somewhat consistent and predictable? I will admit that I have felt much calmer about the situation, having been told that surgery is still "at least" 10 years away, in his opinion. My exercise tolerance is good. My chest pains seem totally consistent with the arthritis stuff, so I am feeling much less anxiety about the road ahead. I just wonder if the situation could likely change dramatically and unexpectedly over the next few years, or if I can be fairly confident that any stenosis progression would be gradual and predictable?

Also, has anyone else been put on statin therapy or heard about this "new" theory in the heart community? The more I hear about statins, the fewer problems I have with taking Lipitor. My cholesterol is WAY low now. But there may be even other benefits from taking statins, so it's an interesting avenue, I believe.

This has been very long... I look forward to your thoughts on the subject.

Karen

 

[Phyllis]

Dick was put on statins by his surgeon "after" AV surgery as the newest theory is that it will keep the new valve from calcifying. He never had high cholesterol and after a month on the statin, his numbers dropped way below norm. With the agreement of his local cardiologist, he went off the statins. That office didn't believe it is proven that there is a correlation between the statins and recalcification of the valve and there are downsides to cholesterol numbers that are too low. If you do a search for statins and valves, there is a lengthly thread on this subject. Heres a good one http://www.valvereplacement.com/forums/showthread.php?t=8492&highlight=statins+valves

 

[tobagotwo]

The calcification of bicuspid or damaged valves starts slowly over a course of years, and escalates as it goes along. The worse it gets, the faster is gets worse.

However, there is a long build-up period before that part of it happens, and the calcification process can seemingly go on hold for a number of years, then suddenly pick up again. Your personal body chemistry and activity level play a big role in the speed at which that happens. There are also variations in test results that can lead one to an assumption that no change has occured between tests, when actually the first or the second test results might have been somewhat off the mark, skewing the perception of the results.

There are theories that statins could reduce the speed of calcification of a damaged valve, or a replacement tissue valve. The makers of statins would like it to be so. However, I have seen no conclusive (controlled) studies, and absolutely no studies specific to people who already have good cholesterol levels, that actually validate those theories. Also, as far as I know, it is not an FDA-approved indication for statins at this time.

Most of the theories revolve around statins helping to reduce general arterial reactivity (including tie-ins with C-reactive protein), and thus all arterial deposits, including calcium (the mineral apatite, actually, which contains calcium). However, it could be noted that statins are not the only, and maybe not the best route to accomplishing that.

There are caveats to the use of statins in people who have good cholesterol counts. In fact, sometimes in people who don't have good cholesterol counts as well.

Cholesterols are used in the brain to help transmit messages. There are anecdotal examples of people who have lost their ability to concentrate, who have lost highly responsible positions due to a sudden inability to perform mentally in their jobs, and even people who have been declared incompetent to manage their own affairs - all of whom slowly recovered after being taken off of aggressive statin treatment. Research has since validated that a chemical mental link does exist with cholesterol.

It has also been shown that people who have even inactive (carrier) genes for muscle conditions can have muscular reactions to statins, including weakness, pain, and even immobility. That has been documented, and I recently published a link to a study to that effect (there are a growing number of studies that verify this potential issue).

Each person must choose their own risk profile in life, but I feel this information should have been provided to you before a prescription was written, especially if the indication has not been approved as safe or efficacious by the FDA.

The study process for submissions to the FDA basically tries to show three things: efficacy (does the drug actually do what it says it will, better than what already exists?), toxicity (how much of it can you safely take?), and dosage (at what dosage level(s) is the drug effective?). That is why waiting for the FDA can be a good thing, or should at least be a factor in your health decisions.

The point is that it could work, or it could backfire. There is likely insufficient study evidence at this time to determine which is more likely to happen. Were they for me, my response would be to decline the statins. Your choice should reflect what you believe. "You makes your choice and takes your chances."

Best wishes,

 

[JimL]

I fired a cardiologist years ago because he wanted me to have an echo every six months. The echo I had just had then, years before surgery, showed no change in thirty years. I still don't like that cardiologist, but he may have had a point. When my valve did go bad, it went bad quickly. I felt like everything was uphill in the spring, dragged my way through the summer, had a constant cough in the fall (not from bronchitis, but from congestive heart failure), and I think I would have been dead by Christmas if I hadn't had surgery in November. Conclusion: I don't think the valve calcifies in any kind of gradual, predictable process.

 

[Karen]

Thanks for your responses... You've given some things to think about. When I see my PCP in a few weeks, I'll ask about the Lipitor and MY cholesterol levels.

 

[epstns]

I have moderate to severe aortic stenosis, diagnosed about 3 years ago. My cardio recently asked if I wanted to "try" a statin to see if it slows the progression, as there are several studies in process to test that hypothesis. I agreed to try Crestor, as that is one of the drugs in trial. After one month the side effects were so nasty that I stopped the med. All of a sudden I felt as if it was surgery time NOW -- short of breath, no energy, pains all over, muscle weakness, low exercise tolerance, etc. Now, a month after discontinuing Crestor, I'm pretty much back to normal. No SOB, normal exercise tolerance, just a few lingering aches and pains.

My point? Be very cautious and observant if you try statins. . .