Cholesterol and ALS

[Will]

My PALS was diagnosed today with Familial Hypercholestoralemia. I have not read much on this forum about ALS and cholesterol. Someone once mentioned it was not an issue. I don't know if that is because ALS is so much more immediate or what.

MY PALS is 3 years stable, still can walk, and does not take Rilutek.

Should he go on the statin drug(80 mg Provacol) and Zetia that the doc wants him to take. This is pretty aggressive treatment. I don't know if there is any ALS implication or not. Any thoughts?

 

[Nikki J]

What does the neuro say? There was some research a while back that a high ldl correlated with a slower progression but later research seems to show that it is not an independent predictor of slow progression. However some people feel statins are bad for ALS. They definitely have neuro side effects for some non PALS. If he does end up taking them he needs coq10 too

 

[Atsugi]

Wow. Help me understand this. The doctor knows he's dealing with an ALS patient, and is concerned about his lipids?!
Maybe your doctor is concerned that your PALS cholesterol is more immediately dangerous than his ALS. Hard to imagine.

A quick google search says that there is some controversial research saying that cholesterol-lowering statins might be causing ALS.
Some studies say cholesterol is actually protective against ALS.

 

[bigmark1954]

I have been on Simvastatin for 7 years. My cardiologist says it is important for my heart. At my last clinic the doc seemed alarmed by the fact that I am on it. First two clinics they said nothing about it. If my clinic doc tells me to disco it , I will.

 

[nebrhahe53]

I took cholesterol lowering statin drugs since they came out in 1987. Research now seems to indicate a correlation between these drugs and ALS. I believe the statins block coenzyme Q10 which is a neuroprotective agent. I stopped as soon as I heard of this-too late for me but I would be very careful taking these drugs and if I had it to do over again, i probably wouldnt take them at all.
Hard to believe that your Dr is worried about a heart attack when you have a terminal disease that is usually very fast moving

 

[vzandt]

My pals has had high cholesterol for years and was on a high dose of Lipitor. When he was diagnosed with ALS we took him off the Lipitor. It can have serious side effects involving muscle. Didn't make sense to us to give him something that could cause muscle problems when he was going to have major muscle problems in his future. His doctor was ok with our decision . That was almost five years ago. He's still eating..talking...walking with a walker...and he hasn't had a heart attack or stroke. Is high cholesterol good for pals..? .we decided to keep it just in case.

 

[azgirl]

I stopped lipitor immediately after Dx.

 

[dalvin]

About the time I got my diagnosis, my cholesterol shot up off the charts. My pcp put me on Lipitor. After I got my peg he took me off it figuring the jevity would have the right amounts of things in it. Can't say whether it might have accelerated things or not but I do know that I accelerated greatly after the peg was put in

 

[acesjr68]

I tried red yeast rice (what statins drugs are made from )because of high chloresterol before i was diagnosed with als to see what the side effects would be, because it usually effects muscles. I felt like someone was squeezing my heart and i quit. Today i don't give a rats butt what my level is now.

 

[Music67]

Simvastatin has been shown to have a link to muscle atrophy. I went off of it for that reason for a few months before I was officially diagnosed with ALS.

 

[patrick123]

I was taking a statin drug for many years. I also stopped after diagnosis.

 

[Mediasmart]

My clinic suggested I stop statins immediately and in no uncertain terms. Just one less pill.

 

[Schmidhogan]

Wow. I've been taking Lipitor for ages. My clinic doctor never mentioned dropping it. I'd like to pop fewer pills. Maybe I'll drop the Lipitor. Thanks for the heads up. Alex

 

[laurel]

My PALS was diagnosed today with Familial Hypercholestoralemia. I have not read much on this forum about ALS and cholesterol. Someone once mentioned it was not an issue. I don't know if that is because ALS is so much more immediate or what.

MY PALS is 3 years stable, still can walk, and does not take Rilutek.

Should he go on the statin drug(80 mg Provacol) and Zetia that the doc wants him to take. This is pretty aggressive treatment. I don't know if there is any ALS implication or not. Any thoughts?

An emphatic NO to taking statins. More and more literature out there linking neuromuscular disorders to the prescribing of statins. Many of my friends and neighbours have had their GP's take them off statins of late citing new literature about them being over presecribed. The big drug companies are rising up so beware of them launching counter campaigns supporting the statins. They have made billions on statins and won't go down without a big fight. Statins have been prescribed like aspirin to this current generation. Ask your PALS doctor about alternatives to statins please.

 

[gooseberry]

My husband took simvastatin for several years. It can cause muscle atrophy. cramping and general breakdown. When my husband first presented with these symptons to his doctor his simvastatin was dtopped and he was put on magnesium 400mg twice a day and co q 10 100 mg twice a day. He also had to drink tonic water 8 oz twice a day.