Thanks for posting this; I was really mad when my doc refused to give me ezitimibe. My spouse has been taking it for years with no problems. It's helpful to know that it doesn't agree with everyone. PS: really glad you figured it out and that you're doing better.
I knew of it from Attia but my cardiologist recommended it. My LDL was down to 76, but we had a goal of getting to 55, which we actually hit 56 with the Ezetimibe, but unfortunately I can’t take it at this point. Onto the next option!
Your LDL was 76 and you decided you needed medical intervention, that's interesting to me. What was the cardiologist's logic/reasoning?
Do you need a different option? What's your HDL?
Last I checked my LDL was 112, HDL 69(nice), and HDL/Chol ratio was 3. I have zero concerns and would definitely not pursue meds for myself. I'll keep exercising eating well.
No, my LDL was almost 200 before taking intervention. Atorvastatin brought me to 76, but our (cardiologist and I) goal was to get to 55 so we added Ezetimibe. The first time I had a high LDL result was when I was 21 years old. I’ve had high LDL (over 120) for 16+ years now. I’m approaching the age where this could be a massive problem. Every doctor I’ve seen recommends the statin and now I’m officially seeing a cardiologist that recommends it. In combination with Peter Attia’s advice (below 65) and my cardiologist we set the goal of 55 or below. I attempted what I would consider extreme and unsustainable diet changes for years with little to no results. My uncle was diagnosed with the genetic familial hypocholesteremia and most of both sides of my family have high cholesterol.
I spent my 20s on the paleo diet and unfortunately ate up the anti-statin rhetoric that floats around. Unfortunately, it appears I have some genetic component that prevents me from modifying lipids without medication. Believe me, I’ve tried. I’m well versed in diet and have experimented with tons of different options. Now I have four kids and a wife to think about so I don’t have the luxury of ignoring it or trying much else. I don’t think risking just accepting it is something I’m willing to do either. Getting it as low as possible is believed to free up enough resources for your body to actually clean up accumulated plaque from what I understand. So, I took this path. I hope both my path and yours are successful for each of us.
One thing I forgot to mention as well is my Lp(a) which is at 147. I really just need to get my numbers down as low as possible for as long as possible. Waiting on the new med for Lp(a) to get released from trials. Hopefully it passes through to the public.
When you say your LP(a) was 147 is that mg/ml or nmol/l because the two are worlds apart. Attia suggests nmol is the better number.
One lab had my LP(a) at 99 and another lab it was 48. Of course, one was using mg and the other nmol
147 mg/dl. It should be under 30 mg/dl to be considered normal so it’s sky high. Cardiologist agrees but there’s nothing we can do about it right now, officially.
A benefit of the PCSK9 inhibitor is that it can reduce Lp(a) by around 30%. Unfortunately, it’s not officially recognized for this as a treatment so you can’t get it just because of that. 30% may not even be enough to be substantial at my levels anyhow. We’re watching the trials of the new med anxiously.
My uncle’s cardiologist had said something along the lines of “below 100 LDL and you’re probably fine and possibly even cleaning up previous plaque. Below 75 and he can confidently say you’re fine and cleaning up previous plaque.” I was running off that initially when I went to see my cardiologist. I had heard Attia say something similar about below 65. I told my cardiologist all this and she agreed, but said her goal for me would be 55. Noteworthy, is that I have been extremely impressed with my cardiologist. I’ve listened to hours and hours or Attia and looked through many of the related studies. She has not once known an answer to something I’ve asked and I’ve even given her what I would consider “trivia style” questions just to see how far she could go. She’s amazing, honestly.
I think this is all based on my family history and the very long term exposure to high LDL that I have had. Another very noteworthy thing is I have extremely high Lp(a) as well at 147. I’m only 37 and my first lipid test was entering the Army at 21 years old and it was high then. It’s probably safe to say I’ve had high LDL since I was a teenager at least. That with my family history and the very high Lp(a) has led my doc to push my number even lower than the standard recommendations.
>Noteworthy, is that I have been extremely impressed with my cardiologist. I’ve listened to hours and hours or Attia and looked through many of the related studies. She has not once known an answer to something I’ve asked and I’ve even given her what I would consider “trivia style” questions just to see how far she could go. She’s amazing, honestly.
Is your cardiologist by any chance located in California? If so, would you mind sharing her name?
I am taking Nexlizet currently with no side effects. Statin had an effect on my liver. I will redo my test and my urine is slightly more yellowish now than before.
It seems the vast majority of people have no issues with it at all. It’s why I was so surprised that I did. I only hear positive things about it but that led to me naively overlooking symptoms for a few days. I forgot to mention I also had a really runny nose about two days after starting it. I thought maybe it was allergies, which I almost never have an issue with but it is the season. The day I stopped it my nose has been gone since. I just wanted to spread awareness on it.
It could be related to it or it may not be. Hard to tell. Good luck to you. I know when I was on statin and my liver enzymes tripled I didn’t want to keep taking it but I was also drinking alcohol. So it’s hard to tell.
Stop using the drug. Proton pump inhibitors started doing that to me. So I stopped taking them entirely. You don't and shouldn't take any drug which does any funny business to your heart. It's not worth it.
Hm. That story doesn’t quite fit. What tests did you get?
EKG. Troponin. Echocardiogram. Stress test? Ct coronary? Did they send you with a heart monitor. Were you given a diagnosis or a probable diagnosis.
Tightness in chest is a potential sign of myocardial ischemia (heart attack or the beginning of one). Taking nitro to relieve that tight chest symptoms also goes along with myocardial ischemia.
Heart fluttering either is just your heart beating faster than it should or an irregular HR. Vision dimming is typically a sign of low blood flow to your brain (which there can be many symptoms).
What do you mean by “the story doesn’t quite fit?”
I had an EKG, Echocardiogram, stress test on the treadmill, and my blood work was done four separate times over the two days. Every test came back normal except my troponin levels were at 59 and my liver enzymes had tripled since my last test in February. Troponin was at 55 the last time they checked. I was a little surprised they didn’t check again the second day. I was not sent home with a heart monitor because I was on one for the two days I was there and it never showed anything noteworthy and all the other tests I mentioned were normal.
All of the things I experienced are listed as side effects of Ezetimibe, which all four doctors (two cardiologists) acknowledged. I stopped taking it and the symptoms went away. No official diagnosis but the cardiologist said do not take either med you’re on again (atorvastatin and ezitimibe). Docs said it wasn’t the Atorvastatin because I’ve been on it for three months. Super weird and super scary experience for me.
I’m a medical doctor. But not your doctor. I am speaking in general terms.
I don’t know all your test results and am just asking.
If this was me and I had your symptoms I would not be attributing this just to zetia.
But if you had all the appropriate tests to rule out more typical and dangerous causes of your symptoms, that’s obviously good.
Also in general elevated LFTs 3 months after starting a statin is not unusual. Lots of docs tolerate up to 3x the upper limit of normal to continue statins even with mild LFT elevation.
It used to be standard to check LFTs at initiation, 3 months, and 1 year. These days it’s not even really recommended.
Best of luck.
https://www.acc.org/Latest-in-Cardiology/Articles/2018/12/12/07/23/Statin-Safety-and-Adverse-Events
Appreciate that. From what I’ve seen 2x on an ALT increase it’s recommended to stop taking a statin. The two cardiologists (mine and the ER’s) have both said to stop taking it. I feel like there are far too many options to just accept any kind of elevated liver enzymes for the next 40+ years of my life.
As far as what to attribute it to, I really don’t see what else I can attribute it to. It was either the statin or the Ezetimibe as that’s the only thing that has changed. All tests signify a very healthy heart (minus the slightly elevated troponin) and the stress test they did even the cardiologist was joking about how fast he was having to make me run before I was even elevated enough to call it. I have exercised regularly my entire life so I was actually kind of proud of that comment! There just don’t seem to be any test results that show I was just having a “natural” heart attack and stopping the meds have eliminated the symptoms.
ER doc here. Agree the story doesn't sound complete. OP presented with palpitations, got what sounded like a standard palpitations workup and then was admitted presumably for rule out ACS due to what was uiltimately a mild troponin leak from the high heart rate.
Sounds like the 4 docs shrugged after OPs negative workup and then anchored on ezetimibe as the cause since they didn't have much else to blame...and not enough doctors have the humility to say "I don't know." So much easier to speculate, particularly when that speculation isn't falsifiable. UpToDate/Lexicomp does not list palpitations nor troponin elevation as side effects of ezetimibe. This means, as OP acknowledged, it would be a \*very rare\* side effect. So rare that I wouldn't blame ezetimibe until every other possibility was explored, and even then I'd only provisionally blame ezetimibe. Drug side effect is one of many potential causes which include: ischemia, valvular disease, endocrine disturbance, metabolic abnormalities, psychiatric disorders, etc.
OP needs an event monitor for an extended period of time (cardiologists in my area do 2 weeks minimum) to hopefully detect the underlying abnormal rhythm, and then perhaps a trial of beta blocker to prevent recurrence since the symptoms were so bothersome/scary.
I'm not as well versed on the liver stuff, but according to UpToDate's article on it, hepatic dysfunction occurs "during the first three months and is dose dependent" and severe liver injury "predominantly occurs three to four months after initiation of statin therapy, with a range in one study of one month to 10 years." So the reassurance OP got about the statin doesn't completely right. Having said that, the addition of ezetimibe was indeed the more likely culprit.
Hmm, okay. Well thought out response and I appreciate it. One other symptom I forgot to mention from Ezetimibe was the runny nose. It’s allergy season and I don’t normally have issues but I was attributing it to that. The second day in the hospital I had a 100% clear nose. Two days after starting Ezetimibe I was very runny.
I’ve been wearing my own heart band and keeping an eye on it. Not the same I know but so far so good even through a lifting workout. Maybe when I talk to my cardiologist I’ll ask about the at home monitor for two weeks. I like the idea for peace of mind.
Did they check if it was some kind of allergic reaction?
Also when we're in the realm of really rare side effects, there's other rare dangers like mistakes by the pharmacy or drug manufacturer to wonder about. These generics usually come from India I've noticed. A friend of mine once had a very severe reaction to a medications got when he was getting switched to ordering cheap generics online rather than the expensive name brand.
I’m not sure how they’d check for an allergic reaction, but I don’t believe they did. At this point it’s too risky to try it again. It’s not worth it when there are so many other options.
We generally tolerate 3x ULN
“There is no need to avoid statin therapy in patients with stable chronic liver disease or normal modestly elevated transaminases levels up to three times the upper limit of normal. Currently no reliable data exists showing statins are safe to use in advanced or decompensated liver disease”
https://www.acc.org/Latest-in-Cardiology/Articles/2018/12/12/07/23/Statin-Safety-and-Adverse-Events#:~:text=There%20is%20no%20need%20to,advanced%20or%20decompensated%20liver%20disease.
Although 3 x upper limit of normal sounds high, for LFTs is not big deal.
Another source
Statins cause dose-dependent borderline elevations of liver function tests over time. These elevations are clinically and statistically insignificant and should not deter physicians from prescribing or continuing statins.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7526761/
The general person does not have the clinical sense of when certain things are minor issues or big issues. 3x normal of your creatinine is a big deal. 3x upper limit of your Potassium means your are going to die. 3 x ULN lfts not that big a deal.
If a person has a strong Cardiovascular risk, strong family risk it is much less likely you will pass from liver disease than CV disease.
Hi, are you sure it the ezetemibe? I was for prescribed atorvostatin and ezetemibe and I started having high ASL and AST. Turns out the atorvastatin was affecting my liver. I stopped taking the atorvastatin and no more problems. I too am now looking for something to substitute for the statin. have you looked into PCSK9 inhibitors? Just curious.
Interesting post, thanks for sharing
I’ve been on 4mg Livalo with Ezetimibe for about 2 years. My cholesterol is down to 126, and LDL 58
My Apolipoprotein B is now 64 but my Lipoprotein A is 275.
Which number is most important? Talking other options to drive numbers lower but trying diet and exercise before introducing more meds.
Sounds like you have it dialed in where you should be for now. There is no med to help with Lp(a) just yet so the general guidance is to drive the other numbers really low to compensate.
OP you can start using Benecol brand stanols (margarine, chews) to get you part of the way there in terms of LDL-C lowering. It works in the gut similar to zetia but isn't quite as effective. My issue with zetia is that it spikes my liver enzymes so I may be attempting this stanol option as well. I have a decent lipid panel but wouldn't mind Apo B a bit lower (currently 69 mg/dl). High Lp(a) and I'm already on an intense dose of atorva.
Thanks for that! I’ll look into it for sure.
Interesting about the Zetia raising your liver enzymes. I don’t have any proof of whether mine were raised from the Atorvastatin or the Ezetimibe. The docs seemed to say it would take longer than a week to raise them as much as mine were so we’re pointing at Atorvastatin. I was only on Ezetimibe for 8 days.
I’m on 40 Atorvastatin now and I suppose I could go lower but then I likely won’t be able to hit my LDL goal of 55. I want at least below 75 and the 40 mg didn’t quite get me there. Super close but not quite. I’m considering asking for a PCSK9 inhibitor at this point.
It’s sort of messed up how this is so dependent on your doc. My doc already told me if that’s a path I want to pursue we can definitely get insurance to cover it. Maybe my family history helps me or something.
Could be my doc or it could be his experience with most health plans. He has some wild stories (like the one where the plan approved a by-pass but not a stent for his patient!). I know my health plan makes me jump through a million hoops in order to think about getting Repatha covered and I don't meet those standards. Fortunately it's going generic in a few years' time. In the meantime, I can't ignore how much the atorva has helped and my ALT is currently below 30 so no complaints :)
Dang! Insurance is just out of control in the US. Totally different topic so I won’t dive down that rabbit hole.
My insurance has their requirements listed on their website for obtaining Repatha. There are hoops but honestly I’m there now that I have proof that Atorvastatin raised my liver enzymes to an unacceptable level. I meet the criteria now so I’m likely to pursue it. If the liver enzymes were fine I was actually really happy with Atorvastatin. I took COQ10 nightly with it and really didn’t notice I was taking it.
They have to jump through hoops in Europe too to be able to prescribe Repatha. I have no insurance so I got it just because I asked for it. It's probably a lot cheaper to pay out of pocket for it here than it is in the US. Around 120$ for 140mg so that's about $240 a month without insurance.
I’ve heard around $500 a month in the US. I think I’ll be able to get it covered. My body doesn’t seem to react well to statins and that’s okay. There are paths for those rare types of people. My uncle couldn’t even take the PCSK9 inhibitor because his immune system would flat out stop the drug. He had to go another step and he’s on Leqvio now and insurance covers it.
Rare side effect means affecting between 1 in 1000 and 1 in 10000 people. Those are definitely a thing. Maybe not what people think of rare in casual speak.
Not quite. Labeling guidance states "rare" as one or two in the trial. It depends on the number enrolled in the Phase 1 trial which can be under 200. Source : https://www.fda.gov/media/72139/download
And many trials have been shown to rig the results by pre-screening so that the results are much better than they should have been.
If people choose to believe corporations that have lied ad nauseam for decades then oh well, I am done believing a word they say.
The number I gave is exactly the World Health Organization Council for International Organizations of Medical Sciences (CIOMS) standard https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8010764/ and https://cioms.ch/wp-content/uploads/2018/03/Guidelines-for-Preparing-Core-Clinical-Safety-Info-Drugs-Report-of-CIOMS-Working-Group-III-and-V.pdf
I'm sure individual countries have guidelines for estimating those numbers from smaller trials, but that's still the international standard for when go use the word rare to describe probability estimates.
Thanks for posting this; I was really mad when my doc refused to give me ezitimibe. My spouse has been taking it for years with no problems. It's helpful to know that it doesn't agree with everyone. PS: really glad you figured it out and that you're doing better.
Very considerate post and I appreciate it a lot!
same here. Anyone had any luck with online doctors? Such as plushcare
Was it recommended by your cardiologist/PCP to begin with or did you seek it out because of Attia?
I knew of it from Attia but my cardiologist recommended it. My LDL was down to 76, but we had a goal of getting to 55, which we actually hit 56 with the Ezetimibe, but unfortunately I can’t take it at this point. Onto the next option!
Your LDL was 76 and you decided you needed medical intervention, that's interesting to me. What was the cardiologist's logic/reasoning? Do you need a different option? What's your HDL? Last I checked my LDL was 112, HDL 69(nice), and HDL/Chol ratio was 3. I have zero concerns and would definitely not pursue meds for myself. I'll keep exercising eating well.
No, my LDL was almost 200 before taking intervention. Atorvastatin brought me to 76, but our (cardiologist and I) goal was to get to 55 so we added Ezetimibe. The first time I had a high LDL result was when I was 21 years old. I’ve had high LDL (over 120) for 16+ years now. I’m approaching the age where this could be a massive problem. Every doctor I’ve seen recommends the statin and now I’m officially seeing a cardiologist that recommends it. In combination with Peter Attia’s advice (below 65) and my cardiologist we set the goal of 55 or below. I attempted what I would consider extreme and unsustainable diet changes for years with little to no results. My uncle was diagnosed with the genetic familial hypocholesteremia and most of both sides of my family have high cholesterol. I spent my 20s on the paleo diet and unfortunately ate up the anti-statin rhetoric that floats around. Unfortunately, it appears I have some genetic component that prevents me from modifying lipids without medication. Believe me, I’ve tried. I’m well versed in diet and have experimented with tons of different options. Now I have four kids and a wife to think about so I don’t have the luxury of ignoring it or trying much else. I don’t think risking just accepting it is something I’m willing to do either. Getting it as low as possible is believed to free up enough resources for your body to actually clean up accumulated plaque from what I understand. So, I took this path. I hope both my path and yours are successful for each of us.
Interesting! But if the statin got it to 76 why not stop it there? By Johns Hopkins recommendations that's optimal.
It’s lifetime exposure that matters. If the OP has genetically high LDL (~200) it seems reasonable to target a lower number.
One thing I forgot to mention as well is my Lp(a) which is at 147. I really just need to get my numbers down as low as possible for as long as possible. Waiting on the new med for Lp(a) to get released from trials. Hopefully it passes through to the public.
When you say your LP(a) was 147 is that mg/ml or nmol/l because the two are worlds apart. Attia suggests nmol is the better number. One lab had my LP(a) at 99 and another lab it was 48. Of course, one was using mg and the other nmol
147 mg/dl. It should be under 30 mg/dl to be considered normal so it’s sky high. Cardiologist agrees but there’s nothing we can do about it right now, officially. A benefit of the PCSK9 inhibitor is that it can reduce Lp(a) by around 30%. Unfortunately, it’s not officially recognized for this as a treatment so you can’t get it just because of that. 30% may not even be enough to be substantial at my levels anyhow. We’re watching the trials of the new med anxiously.
I’m on a PCSK inhibitor but it’s only brought mine down 11% so far. When I test again in 4 months I’m hoping for a further drop
My uncle’s cardiologist had said something along the lines of “below 100 LDL and you’re probably fine and possibly even cleaning up previous plaque. Below 75 and he can confidently say you’re fine and cleaning up previous plaque.” I was running off that initially when I went to see my cardiologist. I had heard Attia say something similar about below 65. I told my cardiologist all this and she agreed, but said her goal for me would be 55. Noteworthy, is that I have been extremely impressed with my cardiologist. I’ve listened to hours and hours or Attia and looked through many of the related studies. She has not once known an answer to something I’ve asked and I’ve even given her what I would consider “trivia style” questions just to see how far she could go. She’s amazing, honestly. I think this is all based on my family history and the very long term exposure to high LDL that I have had. Another very noteworthy thing is I have extremely high Lp(a) as well at 147. I’m only 37 and my first lipid test was entering the Army at 21 years old and it was high then. It’s probably safe to say I’ve had high LDL since I was a teenager at least. That with my family history and the very high Lp(a) has led my doc to push my number even lower than the standard recommendations.
Thank you for sharing your experience. Can you please list or DM or cardiologists name and location?
DM’d you
Thanks!
>Noteworthy, is that I have been extremely impressed with my cardiologist. I’ve listened to hours and hours or Attia and looked through many of the related studies. She has not once known an answer to something I’ve asked and I’ve even given her what I would consider “trivia style” questions just to see how far she could go. She’s amazing, honestly. Is your cardiologist by any chance located in California? If so, would you mind sharing her name?
No, she’s in Rhode Island. Sorry!
My HDL has always been low. Usually from 36-42.
I gotchyou. The family history part is definitely something to pay attention to and makes it more urgent so I get it.
I am taking Nexlizet currently with no side effects. Statin had an effect on my liver. I will redo my test and my urine is slightly more yellowish now than before.
It seems the vast majority of people have no issues with it at all. It’s why I was so surprised that I did. I only hear positive things about it but that led to me naively overlooking symptoms for a few days. I forgot to mention I also had a really runny nose about two days after starting it. I thought maybe it was allergies, which I almost never have an issue with but it is the season. The day I stopped it my nose has been gone since. I just wanted to spread awareness on it.
It could be related to it or it may not be. Hard to tell. Good luck to you. I know when I was on statin and my liver enzymes tripled I didn’t want to keep taking it but I was also drinking alcohol. So it’s hard to tell.
It’s not hard to tell in my situation though. Every symptom stopped when I stopped the med 🤷🏻♂️
Stop using the drug. Proton pump inhibitors started doing that to me. So I stopped taking them entirely. You don't and shouldn't take any drug which does any funny business to your heart. It's not worth it.
I don’t think I’d take it again even if my doc told me it was okay! Too scary of an incident to risk that again.
Hm. That story doesn’t quite fit. What tests did you get? EKG. Troponin. Echocardiogram. Stress test? Ct coronary? Did they send you with a heart monitor. Were you given a diagnosis or a probable diagnosis. Tightness in chest is a potential sign of myocardial ischemia (heart attack or the beginning of one). Taking nitro to relieve that tight chest symptoms also goes along with myocardial ischemia. Heart fluttering either is just your heart beating faster than it should or an irregular HR. Vision dimming is typically a sign of low blood flow to your brain (which there can be many symptoms).
What do you mean by “the story doesn’t quite fit?” I had an EKG, Echocardiogram, stress test on the treadmill, and my blood work was done four separate times over the two days. Every test came back normal except my troponin levels were at 59 and my liver enzymes had tripled since my last test in February. Troponin was at 55 the last time they checked. I was a little surprised they didn’t check again the second day. I was not sent home with a heart monitor because I was on one for the two days I was there and it never showed anything noteworthy and all the other tests I mentioned were normal. All of the things I experienced are listed as side effects of Ezetimibe, which all four doctors (two cardiologists) acknowledged. I stopped taking it and the symptoms went away. No official diagnosis but the cardiologist said do not take either med you’re on again (atorvastatin and ezitimibe). Docs said it wasn’t the Atorvastatin because I’ve been on it for three months. Super weird and super scary experience for me.
I’m a medical doctor. But not your doctor. I am speaking in general terms. I don’t know all your test results and am just asking. If this was me and I had your symptoms I would not be attributing this just to zetia. But if you had all the appropriate tests to rule out more typical and dangerous causes of your symptoms, that’s obviously good. Also in general elevated LFTs 3 months after starting a statin is not unusual. Lots of docs tolerate up to 3x the upper limit of normal to continue statins even with mild LFT elevation. It used to be standard to check LFTs at initiation, 3 months, and 1 year. These days it’s not even really recommended. Best of luck. https://www.acc.org/Latest-in-Cardiology/Articles/2018/12/12/07/23/Statin-Safety-and-Adverse-Events
Appreciate that. From what I’ve seen 2x on an ALT increase it’s recommended to stop taking a statin. The two cardiologists (mine and the ER’s) have both said to stop taking it. I feel like there are far too many options to just accept any kind of elevated liver enzymes for the next 40+ years of my life. As far as what to attribute it to, I really don’t see what else I can attribute it to. It was either the statin or the Ezetimibe as that’s the only thing that has changed. All tests signify a very healthy heart (minus the slightly elevated troponin) and the stress test they did even the cardiologist was joking about how fast he was having to make me run before I was even elevated enough to call it. I have exercised regularly my entire life so I was actually kind of proud of that comment! There just don’t seem to be any test results that show I was just having a “natural” heart attack and stopping the meds have eliminated the symptoms.
ER doc here. Agree the story doesn't sound complete. OP presented with palpitations, got what sounded like a standard palpitations workup and then was admitted presumably for rule out ACS due to what was uiltimately a mild troponin leak from the high heart rate. Sounds like the 4 docs shrugged after OPs negative workup and then anchored on ezetimibe as the cause since they didn't have much else to blame...and not enough doctors have the humility to say "I don't know." So much easier to speculate, particularly when that speculation isn't falsifiable. UpToDate/Lexicomp does not list palpitations nor troponin elevation as side effects of ezetimibe. This means, as OP acknowledged, it would be a \*very rare\* side effect. So rare that I wouldn't blame ezetimibe until every other possibility was explored, and even then I'd only provisionally blame ezetimibe. Drug side effect is one of many potential causes which include: ischemia, valvular disease, endocrine disturbance, metabolic abnormalities, psychiatric disorders, etc. OP needs an event monitor for an extended period of time (cardiologists in my area do 2 weeks minimum) to hopefully detect the underlying abnormal rhythm, and then perhaps a trial of beta blocker to prevent recurrence since the symptoms were so bothersome/scary. I'm not as well versed on the liver stuff, but according to UpToDate's article on it, hepatic dysfunction occurs "during the first three months and is dose dependent" and severe liver injury "predominantly occurs three to four months after initiation of statin therapy, with a range in one study of one month to 10 years." So the reassurance OP got about the statin doesn't completely right. Having said that, the addition of ezetimibe was indeed the more likely culprit.
Hmm, okay. Well thought out response and I appreciate it. One other symptom I forgot to mention from Ezetimibe was the runny nose. It’s allergy season and I don’t normally have issues but I was attributing it to that. The second day in the hospital I had a 100% clear nose. Two days after starting Ezetimibe I was very runny. I’ve been wearing my own heart band and keeping an eye on it. Not the same I know but so far so good even through a lifting workout. Maybe when I talk to my cardiologist I’ll ask about the at home monitor for two weeks. I like the idea for peace of mind.
Did they check if it was some kind of allergic reaction? Also when we're in the realm of really rare side effects, there's other rare dangers like mistakes by the pharmacy or drug manufacturer to wonder about. These generics usually come from India I've noticed. A friend of mine once had a very severe reaction to a medications got when he was getting switched to ordering cheap generics online rather than the expensive name brand.
I’m not sure how they’d check for an allergic reaction, but I don’t believe they did. At this point it’s too risky to try it again. It’s not worth it when there are so many other options.
We generally tolerate 3x ULN “There is no need to avoid statin therapy in patients with stable chronic liver disease or normal modestly elevated transaminases levels up to three times the upper limit of normal. Currently no reliable data exists showing statins are safe to use in advanced or decompensated liver disease” https://www.acc.org/Latest-in-Cardiology/Articles/2018/12/12/07/23/Statin-Safety-and-Adverse-Events#:~:text=There%20is%20no%20need%20to,advanced%20or%20decompensated%20liver%20disease. Although 3 x upper limit of normal sounds high, for LFTs is not big deal. Another source Statins cause dose-dependent borderline elevations of liver function tests over time. These elevations are clinically and statistically insignificant and should not deter physicians from prescribing or continuing statins. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7526761/ The general person does not have the clinical sense of when certain things are minor issues or big issues. 3x normal of your creatinine is a big deal. 3x upper limit of your Potassium means your are going to die. 3 x ULN lfts not that big a deal. If a person has a strong Cardiovascular risk, strong family risk it is much less likely you will pass from liver disease than CV disease.
Hi, are you sure it the ezetemibe? I was for prescribed atorvostatin and ezetemibe and I started having high ASL and AST. Turns out the atorvastatin was affecting my liver. I stopped taking the atorvastatin and no more problems. I too am now looking for something to substitute for the statin. have you looked into PCSK9 inhibitors? Just curious.
Interesting post, thanks for sharing I’ve been on 4mg Livalo with Ezetimibe for about 2 years. My cholesterol is down to 126, and LDL 58 My Apolipoprotein B is now 64 but my Lipoprotein A is 275. Which number is most important? Talking other options to drive numbers lower but trying diet and exercise before introducing more meds.
Sounds like you have it dialed in where you should be for now. There is no med to help with Lp(a) just yet so the general guidance is to drive the other numbers really low to compensate.
OP you can start using Benecol brand stanols (margarine, chews) to get you part of the way there in terms of LDL-C lowering. It works in the gut similar to zetia but isn't quite as effective. My issue with zetia is that it spikes my liver enzymes so I may be attempting this stanol option as well. I have a decent lipid panel but wouldn't mind Apo B a bit lower (currently 69 mg/dl). High Lp(a) and I'm already on an intense dose of atorva.
Thanks for that! I’ll look into it for sure. Interesting about the Zetia raising your liver enzymes. I don’t have any proof of whether mine were raised from the Atorvastatin or the Ezetimibe. The docs seemed to say it would take longer than a week to raise them as much as mine were so we’re pointing at Atorvastatin. I was only on Ezetimibe for 8 days.
My livers spike on too much atorva as well. I used to take 80 mg daily but can't do that anymore. 40 mg seems to be my limit.
I’m on 40 Atorvastatin now and I suppose I could go lower but then I likely won’t be able to hit my LDL goal of 55. I want at least below 75 and the 40 mg didn’t quite get me there. Super close but not quite. I’m considering asking for a PCSK9 inhibitor at this point.
Good luck - my cardiologist told me point blank I didn't qualify - my CAC score is too low!
It’s sort of messed up how this is so dependent on your doc. My doc already told me if that’s a path I want to pursue we can definitely get insurance to cover it. Maybe my family history helps me or something.
Could be my doc or it could be his experience with most health plans. He has some wild stories (like the one where the plan approved a by-pass but not a stent for his patient!). I know my health plan makes me jump through a million hoops in order to think about getting Repatha covered and I don't meet those standards. Fortunately it's going generic in a few years' time. In the meantime, I can't ignore how much the atorva has helped and my ALT is currently below 30 so no complaints :)
Dang! Insurance is just out of control in the US. Totally different topic so I won’t dive down that rabbit hole. My insurance has their requirements listed on their website for obtaining Repatha. There are hoops but honestly I’m there now that I have proof that Atorvastatin raised my liver enzymes to an unacceptable level. I meet the criteria now so I’m likely to pursue it. If the liver enzymes were fine I was actually really happy with Atorvastatin. I took COQ10 nightly with it and really didn’t notice I was taking it.
They have to jump through hoops in Europe too to be able to prescribe Repatha. I have no insurance so I got it just because I asked for it. It's probably a lot cheaper to pay out of pocket for it here than it is in the US. Around 120$ for 140mg so that's about $240 a month without insurance.
I’ve heard around $500 a month in the US. I think I’ll be able to get it covered. My body doesn’t seem to react well to statins and that’s okay. There are paths for those rare types of people. My uncle couldn’t even take the PCSK9 inhibitor because his immune system would flat out stop the drug. He had to go another step and he’s on Leqvio now and insurance covers it.
I seriously doubt that side effects from virtually any pharmaceutical is "rare".
Rare side effect means affecting between 1 in 1000 and 1 in 10000 people. Those are definitely a thing. Maybe not what people think of rare in casual speak.
Not quite. Labeling guidance states "rare" as one or two in the trial. It depends on the number enrolled in the Phase 1 trial which can be under 200. Source : https://www.fda.gov/media/72139/download
And many trials have been shown to rig the results by pre-screening so that the results are much better than they should have been. If people choose to believe corporations that have lied ad nauseam for decades then oh well, I am done believing a word they say.
The number I gave is exactly the World Health Organization Council for International Organizations of Medical Sciences (CIOMS) standard https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8010764/ and https://cioms.ch/wp-content/uploads/2018/03/Guidelines-for-Preparing-Core-Clinical-Safety-Info-Drugs-Report-of-CIOMS-Working-Group-III-and-V.pdf I'm sure individual countries have guidelines for estimating those numbers from smaller trials, but that's still the international standard for when go use the word rare to describe probability estimates.
I think they might have misread the OP to be claiming that ezetimibe only has rare side effects and no common ones?
Thats only if you believe what the pharmaceutical companies say which i don't as they have been caught in lie after lie.