OT - Anyone else have trouble tolerating statins?

[Ray]

I've had crazy, insanely, wickedly high cholesterol for as long as they've been testing me. I have no other risk factors for heart disease, no family history of heart disease (but plenty of high cholesterol), no symptoms, etc, but I do have these very very high numbers. And a calcium scan showed enough calcium to assume that a bit of plaque build-up has begun. I just yesterday tried taking my third well-known statin drug at the advice of a cardiologist. Long story short - I haven't been able to even remotely tolerate any of the three. The others took a few days before I felt horrible - this one took all of six hours before I felt toxic all over, light-headed, arm and leg and stomach pain, sinuses even more terminally congested than normally, total exhaustion, etc. The docs keep telling me that different people react to different statins differently, so they want me to run through the whole friggin' closet full of options to see if I find one that works. But, my GOD, this is an unpleasant process - was planning a ride on this beautiful day, but I feel like I have one of the worst hangovers of my life and even walking feels kind of shaky.

I'm sort of asking here because there are docs here who don't have to worry about their liability when commenting online (rather than advising a patient) and because folks here who have been through it all. Anyone else have this problem? How critical are statins in a situation like mine? Might it make sense just to continue monitoring the situation and see if the calcification, stress test results, etc, get worse? My dad lived to be 88 with wickedly high cholesterol and no meds for it - I know that's no guarantee, but that might speak to the level of risk I might be willing to assume.

Just wondering if anyone else has gone through anything similar.

-Ray

[vandeda]

Ray, I have no advice or experience with what you're dealing with, but I'm sorry to here that you have to go through this and feel like a guinea pig. Hopefully you find a good solution, even if its going off straight family history

[znfdl]

Ray:

I could tolerate statins for only a week and I have tried them all. After about a week on the statins I would get a strong metallic taste in my mouth and my muscles and joints would ache.

My doctor prescribed Zetia and I have had no side effects. I also had about an 22% decrease in my LDL cholersterol, which is quite good for Zetia. Talk to your doctor and give it a try.

Good luck.

[Too Tall]

Not me however two diff. athletes I coach have had terrible symptoms and are searching still for answers. One guys doc took him off entirely so he could finish training for B.Marathon...took almost three weeks to clear the effects.

[Ray]

Originally Posted by znfdl

Ray:

I could tolerate statins for only a week and I have tried them all. After about a week on the statins I would get a strong metallic taste in my mouth and my muscles and joints would ache.

My doctor prescribed Zetia and I have had no side effects. I also had about an 22% decrease in my LDL cholersterol, which is quite good for Zetia. Talk to your doctor and give it a try.

Good luck.

I guess Zetia works off of a fundamentally different chemical interaction? Good to know its a different option - I'd only heard of it being used along with statins. Thanks for the idea.

-Ray

[mosca]

I have been on Lipitor (10mg) for about 2 years now with no side effects. My cholesterol numbers were only slightly high, but both family history and the calcium scan put me in a high risk group, so I'm sticking with it even though I hate the idea.

I'm no doctor, but if your family history is good and the calcium scan shows only mild buildup, maybe the high cholesterol numbers are not really a problem? As you said, maybe just monitoring the situation is the best way to go - there really aren't any risk-free solutions in these situations. Good luck!

[znfdl]

Originally Posted by Ray

I guess Zetia works off of a fundamentally different chemical interaction? Good to know its a different option - I'd only heard of it being used along with statins. Thanks for the idea.

-Ray

Ray:

Zetia prevents the absorbtion of cholesterol in the large intestine and does not work in the liver. Therefore, I have not had any liver enzyme problems, which from your discussion you seem to have liver enzyme problems.

Also red wine helps

[cadence90]

I am recovering from 2 recent heart attacks. Among other meds, I am now on Lipitor. Occasionally I get a headache, fatigue, etc. but I am not sure if it is the Lipitor or the Niaspan yet. However, almost everyone I know has had bad things to say about Lipitor. I want to get off it asap; my intuition is that it is not good.

[Ray]

Originally Posted by cadence90

I am recovering from 2 recent heart attacks. Among other meds, I am now on Lipitor. Occasionally I get a headache, fatigue, etc. but I am not sure if it is the Lipitor or the Niaspan yet. However, almost everyone I know has had bad things to say about Lipitor. I want to get off it asap; my intuition is that it is not good.

My 'intuition' has told me on each occasion that this stuff is highly toxic. Maybe it's because I'm having the liver reaction znfdl mentioned, but I literally feel like I've been poisoned when I'm on them. And I'm not anti-drug or paranoid about medications - I'm on all manner of allergy and asthma medications and occasionally others without any problems or objections. Even the occasional dose of systemic steroids when a sinus infection gets too serious. But NOTHING feels like what statins have felt like. The only things that come close was a very stupid night about 27-28 years ago when I did too much of some pretty dangerous stuff and probably got halfway to Len Bias-land. I felt almost this poisoned the next day, but not quite. It's THAT bad.

I'd really really LIKE to stick to the red-wine (maybe bring Pete in for a consult ), but I'm not there yet.

-Ray

[cadence90]

Originally Posted by Ray

My 'intuition' has told me on each occasion that this stuff is highly toxic. Maybe it's because I'm having the liver reaction znfdl mentioned, but I literally feel like I've been poisoned when I'm on them. And I'm not anti-drug or paranoid about medications - I'm on all manner of allergy and asthma medications and occasionally others without any problems or objections. Even the occasional dose of systemic steroids when a sinus infection gets too serious. But NOTHING feels like what statins have felt like. The only things that come close was a very stupid night about 27-28 years ago when I did too much of some pretty dangerous stuff and probably got halfway to Len Bias-land. I felt almost this poisoned the next day, but not quite. It's THAT bad.

I'd really really LIKE to stick to the red-wine (maybe bring Pete in for a consult ), but I'm not there yet.

-Ray

I am not anti-drug either, but I'm also certain that in the US especially meds are precribed pretty freely and sometimes in lieu of simple lifestyle changes. I mean, there are major TV ads for Lipitor, etc. for cripes sakes....

That being said, I really think that if your body is having a bad reaction you need to immediately discuss the issue with your doc and request a change in treatment. Again, I am not anti-drug, but every person I have spoken with who takes Lipitor has had only negative reactions to it, and has wanted to get off it. I want to get off it.

Follow Alberto Juantorena's cue: listen to your body above all.

[Ray]

Originally Posted by cadence90

I am not anti-drug either, but I'm also certain that in the US especially meds are precribed pretty freely and sometimes in lieu of simple lifestyle changes. I mean, there are major TV ads for Lipitor, etc. for cripes sakes....

That being said, I really think that if your body is having a bad reaction you need to immediately discuss the issue with your doc and request a change in treatment. Again, I am not anti-drug, but every person I have spoken with who takes Lipitor has had only negative reactions to it, and has wanted to get off it. I want to get off it.

Follow Alberto Juantorena's cue: listen to your body above all.

Unfortunately, my lifestyle is already very low-cholesterol friendly. This is obviously a heredetory issue. And I literally only took ONE of this most recent statin (non Lipitor - Lipitor took me several days to feel less bad than this) and told the Doc I was finished with it. I just wonder if it's gonna be worth trying the whole medicine cabinet full of options - I suspect I'm not going to go through this more than a couple more times before giving up and looking for different options.

Thanks for the input, all,

-Ray

[Jack Brunk]

Ray,

Look into holistic treatment. Red rice yeast is excellent at reducing cholesterol and doesn't have nearly the side effects of Lipitor.

Jack

[Ray]

Originally Posted by Jack Brunk

Ray,

Look into holistic treatment. Red rice yeast is excellent at reducing cholesterol and doesn't have nearly the side effects of Lipitor.

Jack

Thanks Jack. I'd looked into it. It contains lovastatin, which is one of the key chemicals/drugs in most statins. So I'm not sure I wouldn't have the same issues with it. The other thing is that the FDA actually outlawed it for awhile and the stuff that's now allowed back on the health food store shelves doesn't have lovastatin, so it's probably of little or no value in terms of reducing cholesterol. I may give it a try, but it sounds like it will either be useless (if no lovastatin) or potentially will cause the same problems. So it's not my first priority, but I'll keep it in mind.

-Ray

[tiger]

Even if you can't tolerate statins, ignoring the high cholesterol is unwise in the face of a positive coronary calcium scan. Although it sounds like your calcium score is on the low side, it's still there...kinda' like being a little bit pregnant.

Sounds like most of your other risk factors are under control. That's good. The most important predictor is what is going on in your arteries, that's why you went for the cardiac scan. Now that you have that information it would be wise to do everything you can to lower your cholesterol. That means medication.

Be sure to enter into a discourse about all this with your doctor. Remember, we are taking about risks and risk factors, not certainties. You and your doctor need to work together to find a medication/diet regimen that you can tolerate for the long run. From your description statins don't seem to be in the cards.

And when you meet with her or him, be sure to ask about an aspirin a day, and the mediterranean diet.

Hope all goes well!

Tiger

[Ray]

Originally Posted by tiger

The Zetia suggestion is the best advice you've been given so far.

Even if you can't tolerate statins, ignoring the high cholesterol is unwise in the face of a positive coronary calcium scan. Although it sounds like your calcium score is on the low side, it's still there...kinda' like being a little bit pregnant.

Sounds like most of your other risk factors are under control. That's good. The most important predictor is what is going on in your arteries, that's why you went for the cardiac scan. Now that you have that information it would be wise to do everything you can to lower your cholesterol. That means medication. If you can't tolerate statins (many people can't) then Zetia and prescription omega-3 fatty acids would be appropriate considerations, and are much better tolerated.

Be sure to enter into a discourse about all this with your doctor. Remember, we are taking about risks and risk factors, not certainties. You and your doctor need to work together to find a medication/diet regimen that you can tolerate for the long run. From your description statins don't seem to be in the cards.

And when you meet with her or him, be sure to ask about an aspirin a day, and the mediterranean diet.

Hope all goes well!

Tiger

Thanks Tiger - good sound advice. I take a fish oil supplement (as well as eating loads of the stuff) but it's not prescription - probably not as potent or reliable? I'm allergic to aspirin (the asthma, sinus pollyps, aspirin allergy triad) but there's a de-sensitization process I probably need to insist on having done, which then requires an aspirin every day without fail. It should help a number of conditions at once. Then I just need to worry about rotting a hole in my gut and letting all that red wine (from the Medeterrainian diet) spill out.

Just choosin' my poisons over here,

-Ray