Cholesterol and ALS

[Will]

Thanks for all the comments. I am getting the message to beware of statins.

I myself had taken statins for 20 years, and had some aches and pains during that time period. I have weaned myself off, but am still apprehensive about my lipid numbers.

My PALS has never taken a statin either before or after his diagnosis.

The prescribing cardiologist is worried because he tested very poorly for arterial inflammation; too many small particle LDL's; too many ApB proteins which carry LDL; and of course High LDL. We have not started the prescriptions yet.

We are waiting for the Neurologist to weigh in.

This is a very confusing situation, especially since his progression is very slow, and I think he has years to live with the ALS. It would be the height of irony if he died of a stroke or heart attack while having ALS hanging over him!

 

[gooseberry]

It would be very interesting to hear your neuros opinion since most als patients seem to benefit from a higher fat diet.

 

[Graybeard]

Hi! This is my first post.

I have always had low cholesterol numbers, highest total 160, in spite of all that ice cream and overweight, and a fresh egg on my oatmeal every morning. My first symptom was losing a pound a week, which lasted 60 weeks before diagnosis. I simply was not eating enough, as I lost appetite. My total cholesterol has hovered at 108-128, which worried me. The docs said it's ok. Wiki relates low cholesterol to end of life state. My blood numbers are good enough for a 19 year old.

Statins lower the number, without improving life span. I have an obese brother who loves statins, because they allow him to pig out, while eating all the bad stuff. He is currently too weak for the pacemaker he needs.

I have friends that testify statins eat away the muscle. One had to use a cane while on statins. He threw them out. Others cite depression.

My conclusion: ignore the cholesterol until it gets under 130 or above 500. Diet and exercise are everything. Without both, one has to be perfect.

 

[nebrhahe53]

Given the choice of dying from a heart attack or stroke, and dying from ALS I'd pick the former any day. I would consider it a mercy.

 

[dalvin]

I agree with Neil about death by heart attack over ALS. Not so sure about the stroke, if it was immediate, sure. Had a uncle though that had a stroke and linger for 4 months, totally paralyzed, unable to speak and totally blind. They said he was aware of everything. Thinking that might be just as bad as ALS

 

[MaxEidswick]

>Thinking that might be just as bad as ALS

yup, had a good friend, Rocky, early 70's, affluent, time for the good life. bang, stroke. Same old Rocky in his eyes, couldn't speak, walk, very zombie-mode.

We at least have time to put our affairs in order, say some goodbyes, make some choices. I'll stick with the hand I've been dealt and just play it out for a while longer. I will cheat if I can!

 

[Will]

His Neurologist weighed in on the side of taking the Statin and the Zetia. He said any side effects of the statins do NOT effect the neurons, only the muscle tissue, which is not the issue in ALS.

He saw the arterial inflammation markers, the small particle LDL and the GI absorption tests (which were all indicative of CV problems).

BTW, our Neuro is the Director of an MDA ALS clinic.

Now we have to decide what to do.

 

[vzandt]

But...the muscle atrophys....

 

[bigmark1954]

Given the choice of dying from a heart attack or stroke, and dying from ALS I'd pick the former any day. I would consider it a mercy.

Keep in mind that heart attacks and strokes don't usually result in death....just more disability. Imagine if you had a stroke and it did not kill you, just made it so you were totally paralyzed on one side, or blind etc. you would be a lot worse off if it did not kill you.

 

[lgelb]

The initial belief that high lipids were markers for slower progression soon gave way to BMI... but cross-correlation and causality are not the same. There's been little progress in delineating factors that may be protective against onset, like not smoking, vs. factors that may be markers for onset or progression (increases in lipids could be on that list), vs. factors that may affect progression once onset has occurred. Also, being on a statin and lowering lipids are two distinct types of risks and likely there's a "sweet spot" for some -- e.g. not high, not low. Statins are being studied as neuroprotection in disorders such as stroke, as well.

Mark brings up another example of why it is important to share wishes with family -- not just the "what if I need a trach to stay alive" or "what if I become locked in" scenarios that are more unique to ALS, but also the "how do I judge adequate quality of life" definition that could drive consideration of options should a stroke, MI, injury or other catastrophic health event occur in the setting of ALS.

My husband stopped Lipitor when we first saw clinical arm weakness.

 

[sadiemae]

High cholesterol in PALS leads to a longer survival. Most Neurologists take PALS off statins as soon as they are diagnosed. G oo gle ALS and high cholesterol.

 

[sadiemae]

Wolters Kluwer Health

 

[Jeff Long]

I'm a cynic, so my philosophy is this; adding any meds to counter cholesterol, triglycerides, etc., as well as quitting cigar smoking and watching my weight all seem about as practical as rearranging the deck chairs on the Titanic .
I'm in no hurry to start my dirt nap, but I'm no longer worried about looking good when I do!

 

[Music67]

I contacted my doctor today at my local VA clinic and told him I am going off my Simvastatin. He agreed with me but told me to be sure and notify my neurology team at the Seattle VA hospital when I go back in November for that wonderful 90-day evaluation.

 

[Tx Daddy's Girl]

I'll never take statins and my family has familial high cholesterol so my dad was on them for years. I actually know a drug rep who speaks out against them now and the harm they cause. Cholesterol protects our brains