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!

[OtayBW]

Originally Posted by 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.

Resurrecting this thread......

I recently had moderately high Ca-CT numbers and with a family history, but only moderate cholesterol levels. I was put on Lipitor a couple of months ago by 2 cardiologists who I really respect. My principal side effect is achy quads (feels like the soreness 2 days after a hard workout). But also, i) my RHR dropped from ~60 to closer to 55 bpm, ii) my distance vision, which is normally great, has gotten noticeably fuzzy, and iii) my ability to focus and think critically (e.g., for like data analysis and report writing, etc.) is also off somewhat. All this is not over the top bad, but this seems like a lot, and I'm starting to wonder if this is something I'm willing to evaluate for a longer period, or inquire about trying something else.

Any similar experiences? Thx...

[Ralph]

I had such severe side effects from statins, I'm now on Repatha. No side effects and far more effective than a statin....for me. LDL mid 50's now. It's a tier 2 drug on my formulary and requires prior approval. (Tried Zetia, and it caused me severe constipation.)

[C40_guy]

Originally Posted by Ralph

I had such severe side effects from statins, I'm now on Repatha. No side effects and far more effective than a statin....for me. LDL mid 50's now. It's a tier 2 drug on my formulary and requires prior approval. (Tried Zetia, and it caused me severe constipation.)

Yes, for anyone who has challenges with statins, Repatha (or Praluent) can be a very effective alternative. It cut my TC in half.

Ask your doctor.

[fourflys]

Originally Posted by OtayBW

Resurrecting this thread......

I recently had moderately high Ca-CT numbers and with a family history, but only moderate cholesterol levels. I was put on Lipitor a couple of months ago by 2 cardiologists who I really respect. My principal side effect is achy quads (feels like the soreness 2 days after a hard workout). But also, i) my RHR dropped from ~60 to closer to 55 bpm, ii) my distance vision, which is normally great, has gotten noticeably fuzzy, and iii) my ability to focus and think critically (e.g., for like data analysis and report writing, etc.) is also off somewhat. All this is not over the top bad, but this seems like a lot, and I'm starting to wonder if this is something I'm willing to evaluate for a longer period, or inquire about trying something else.

Any similar experiences? Thx...

I've been taking simvastatin for a number of years now and the only side effects I seem to have is an occasional "hot flash" that i feel in my face/head.. usually goes away after 30-45 seconds.. I also started lisinopril for BP at the same time, so not sure it's a factor in that.. I recently have noticed a lower RHR as well, but have been on the statin way longer than lower RHR..

[unterhausen]

I'm on crestor and haven't noticed any issues. I always heard about them though and that's why I took so long to try it. Same with BP meds. Both of these problems would go away if I lost the weight I should, so this might be part of why I'm different than a lot of people.



For whatever reason back when this was first posted, I was never allowed to register on here so maybe I shouldn't post this comment.

[johnniecakes]

I was diagnosed with high triglycerides (686) and immediately reduced carbs by about 75% and went on tricor. Had tight and painful back pain. Doc switched to simvistatin (Zocor) and all pain went away and triglycerides now hover around between 120-140

[stackie]

So funny,

I'm a sort of doctor. MD anesthesiologist. So, sure statins can cause severe myalgias per the textbooks. What is myalgia? Muscle pain. Well, pain can be of all sorts of variations. Sharp vs dull, cutting vs burning, achey, pressure....

Well, I went on rosuvastatin a couple years ago because I am a weak individual and treat my depression/childhood trauma/life stress with food. I love pizza, chocolate chip cookies etc.

Well, gosh darn it, my legs have ached all the time. Much like after any Saturday morning World Championship ride, or Sunday 'recovery' ride. Kind of like any ride. But then again, my legs have always been sore for hours or even days after hard workouts for the last 20 years. Oh, and ya, now that you mention it my vision is blurry. And my brain is foggy. I just thought the vision was age related presbyopia and the brain fog was just senile cognitive decline. This year, my primary upped my dose as I have not reached target HDL. Legs ache more. Brain foggier. Vision worse. I'm also older.

I'm comforted to know that I am not the only one who has these symptoms. I guess if they get bad enough, I might push the primary to switch me to Repatha. One of my surgeon friend who subsists on cured meats, cheeses and copious amounts of alcohol got on it and has the most ridiculously good cholesterol numbers. It's literally like a cheat code. I'm not sure of his insurance but he qualifies for MediCare, and he gets it for nothing and I'm pretty sure the list price is in the $1000's of dollars per month. So, I'll have to check how much it would be for me. My wife is on Dupixent which is another exorbitantly priced drug but somehow she is on some sort of patient assistance program that she gets it for about $35 a year. List price is over $3500/month. I don't know how the insurance/pharmacy industry is scamming the system, but I'm sure there is something going on. Sorry, that got tangential fast. That's that brain fog.

Anyway, I realize as I type this, it may sound snarky, but it's my honest to god truth. I wonder if some of the side effects are just aging as I am now 56 years old, or just basic poor physical conditioning and stretching. I've never been a good strength workout guy or stretching guy. I'm sure if I had better mental fortitude, I could get up early before I go to work at 7 am and get in a nice weight workout and stretch.

Anyway, I'm there with you all on this journey. High cholesterol, getting older, and losing fitness and brain power.

Jon

Originally Posted by OtayBW

Resurrecting this thread......

I recently had moderately high Ca-CT numbers and with a family history, but only moderate cholesterol levels. I was put on Lipitor a couple of months ago by 2 cardiologists who I really respect. My principal side effect is achy quads (feels like the soreness 2 days after a hard workout). But also, i) my RHR dropped from ~60 to closer to 55 bpm, ii) my distance vision, which is normally great, has gotten noticeably fuzzy, and iii) my ability to focus and think critically (e.g., for like data analysis and report writing, etc.) is also off somewhat. All this is not over the top bad, but this seems like a lot, and I'm starting to wonder if this is something I'm willing to evaluate for a longer period, or inquire about trying something else.

Any similar experiences? Thx...

[flying]

Originally Posted by stackie

One of my surgeon friend who subsists on cured meats, cheeses and copious amounts of alcohol got on it and has the most ridiculously good cholesterol numbers. It's literally like a cheat code.

This is something I always wonder about. I have a brother who smokes, drinks, is overweight by a lot & eats all kinds of crap but his number are great as he is on various pills for BP, Cholesterol & other things since now diabetic too.

So they take a pill change nothing in their life & think it's all good because "my numbers are great" ?
Obviously wrong but many live like that

[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