Statins

[Poco]

I have read that a viral infection, statins, environment, heavy weights can trigger ALS. My husband's grandfather died of ALS years ago. One day he is fine, then gets a very bad case of pink eye from grandson, goes to the doctor and he puts him on a very high dose of lavostatin (spelling) for high cholestrol and within a month all the systoms start. He had double by-pass surgery 7 years ago and was on Lipitor for 5 years. I wonder how many of you were on statins? I just keep thinking one of these things triggered it. Did most of you just wake up one day and it was there? Our doctor said that most people who get this are active, drug free, not alcoholics. I am not sure what that means. Maybe the drugs and alcohol are the preventitive measures.............(joke). Just curious. It is so hard to stay positive but you are all helping. I make my husband get outdoors and do things while he can, otherwise he would never leave the house. I think about all of you everyday.
Phyl

 

[Al]

Hi Phyl. If you use the search feature above and type in statins there are a bunch of threads about statins and other cholesterol lowering drugs. You're not the first one to wonder about them. On another note though I read of one study they were doing where they thought high doses of statins might help ALS. Who knows?
AL.

 

[Gary Hyland]

Dagnosed in January of this year, I was on statins for at least four years prior to that. A serious fall on a staircase in June of 06 was my first indicator of trouble. I mis-stepped and stumbled, probably due to an impaired ability of my muscles to respond to my balance reflex. The fall was probably the result of emerging ALS that I had been unaware of.

Instantly after the fall, I had an array of ALS symptoms that were, quite naturally, attributed to the fall. As I said, some of the symptoms had been gradually appearing-- general wekness and balance issues. When they worsened and my very high blood CK levels did not diminish, I did some research and learned how risky (for some) statiins could be. I saw my cardilogist about the statins and was taken off them in mid-July. My sypmtoms have progressed since then.

I did discover several cass action suits against the manufacturers of statins. My research into statins led me to conclude that the work done thus far implicates them more in muscle disorders, especialy forms of myositis, than in neural disorders. But my research was far from exhaustive. I would be interested in hearing if anyone has found information linking statins to ALS. It must be remembered that since many miliions of North Americans have been on statins for many years some of them will also develop ALS without there be any statistical proof.

Is anyone aware of any studies attempting to isolate contributing lifestyle factors to ALS? I mean such things as personality type, workplace and environmental exposures, medications, medical history and the like?

 

[liz]

Hi Gary -

I've got nothing to say on the statins issue - never took them myself. Just wanted to say welcome to the forum. Your diagnosed is very recent. How are you feeling?

Liz

 

[Gary Hyland]

Hi Liz
Thanks for asking. My feelings run all over the place. I knew I had something fairly serious and the research I had done on statins had led me to conclude I might have a condition called inclusion body myositis (IBM), which has a prognosis not unlike ALS. I had compiled a list of six possible diagnosis with ALS on the bottom as the least likely, mainly because I was working on the asumption that the statins I had taken were the trigger and I found nothing on the link bewteen statins and ALS. My oldest son is an occupational therapist. He and I had also briefly discussed the possibility of ALS.

All of which is to say when I got my diagnosis two weeks ago (in Phoenix) I wasn't shocked. It hit my poor wife much harder, even though I had shared all my research with her and had tried to prepare her.

I've had a wonderful, joy-filled, rewarding life. I consider myself fortunate to have gone 64 years without symptoms or any serious illness. My heart goes out to the younger people who are coping with ALS. I still delight in many things. I plan on doing all I can to have the best experiences possible through all of this.

Still, I have my moments of deep sadness. The loss of the ability to communicate frightens me most. I will be exploring all the devices and systems that can assist with that.

Gary

 

[Jamiet]

To all in this thread..i've got a little input into all of your stories...

For starters, i've been having unexplained med problems for a few years....however, the ALS (sypmtom) related problems, although, really seem as if they were triggered by my being put on Advicor (Statin) for high cholesterol...well, if i had known the risk, i would have never taken it and the fact that i've had high cholesterol since 20 yrs old would have also changed my mind....(it's heridetary). I did't realize i had high cholest. until i embarked on my massive research project since all this really came to light and a copy of a few blood test going back..12 years shows i should have never been put on it in the first place..... So...Gary...this makes me one of the young ones at a whopping age 32..

it took about 4 - 5 weeks into the statins when i really started noticing...muscle twitches, aches, cramps, etc.

i don't consider myself unlucky, i've accomplised more by age 31 (just made 32) than most accomplish in a lifetime (beautiful family, daughter, son, great wife, great family, own a very successful business), so, if i'm stricken with ALS, then so be it, i'll make the most of the time i have left...make sure not to live it in mysery! It could be worse, i could get killed in a car crash tomorrow and not have the chance to do some of the things i wanted without notice! I've decided to make the most of what i have left, wether it be 5 months, 5 years or 50 years...

If you go online and google "space doc", he has alot of interesting statin stories and their relation to statins and other drugs.

I haven't read up on any class action cases, but my honest opinion, if there were good options to statins, they would not be on the market! And the fact, the drug companies are making so much money, serves the fact, it will be very difficult to really come up with reasoning for them to take them off the market.

Actually, the Neruo specalist i am seeing is the specalist conducting the Statin (Lipitor) test on ALS (Houson Methodist). They think that ALS is related to inflammatory system....maybe there is a connection and the Lipitor and the inflammatory system, but it affects different people in different ways? Why else would they even think about testing it? We'll know soon.

The best to all of you ....

And may the colts stomp the bears today....LOL

 

[CBowman]

To all in this thread..I have some imput also:

My symtoms started rather fast, in September of 06 my calves were really tight. I thought I overworked them at the gym and muscle twitching started also (again thought I was working my muscles to hard). In mid October 06 my left foot droped, I thought it was due to my back issue Ankylosing Spondylitis. I have had Ankylosing Spondylitis since I was 18 years old (Anlylosing Spondyitis - is a disease that primarily involves pain and inflammation of the joints between the spine). I have been on anti inflammation medication (celebrex and mobic) for 14 years. I am also a young one (34 years young).

I havent been diagnosed yet, but it is interesting that there may be a connection to ALS and the inflammatory system.

 

[Poco]

Just one more thing to add is that my husband is now on prescription strength niacin to lower his cholestrol and off statins completely.
Phyl

 

[mlb]

Hi everyone. My brother was healthy and fit before ALS struck. The first time he noticed anything, was when he was on the beach playing football (soccer) with his son. He wanted to kick the ball but his foot would not obey. He did nothing for a little while until my other brother (they are partners in business) saw him dragging his foot and questioned him about it. That is when they went together to see a neurologist. He was diagnosed in September 03. He is 49 years old. Of course, his job was demanding and quite stressful. I also think that ALS is triggered by something i.e inflammation, virus, cold, or a bacteria of some kind.
We have to keep looking at the possibilities.
Anna

 

[CindyM]

I just don't trust statins and other cholesterol lowering drugs. My GP is a stickler for high cholesterol and extra weight and even though he is the one who first suggested I go to the ALS clinic he doesn't know that much about the disease. So as my muscles lose mass the cholesterol climbs and he wants me to go on statins. No way. I figure, what will all this excess cholesterol do to me? Kill me?

 

[emjoi]

Some thoughts. Statins... Lipitor.... it's a very very common drug. I'd say half the people I know over 40 are on it. Could it be that as you get older, you end up on anti-cholesterol drugs, and also as you get older you also have a chance of getting ALS?

My dad had a couple of years of "bad things" before he was diagnosed with ALS. He got hit by a car. He had a heart attack. He got diabetes. It just seemed like he'd walked under a ladder one day. But is all this stuff related, or is it just a bit of bad luck and part of the aging process of turning 60? I dunno.

For some reason God just pointed his finger at him and said "I'm gonna git ya", and threw all these things at him.

 

[Jamiet]

emjoi....

God doesn't act in those ways, although, we would like to think that....but, that's just my personal opinion...

I think, ALS is something, that is immune and inflammation related and the two interact to create major problems, long before we ever notice something or is quickly triggered or "sped up" by certain things, and by the time we notice, its too late to really, accurately fight it....

My idea, is that there are many different triggers, and each person has their own trigger, as so many things react differently to our body and if you and I take the same drug, we have somewhat different reactions or feelings to it. I feel, only the inherited form is the same across the board, as it's a defective gene...hence, modern science has been able to detect it....all others, still a mystery and virtually untreatable.

If you read into all the science, it all points to those two things, but who knows...

Anyway....take care..

 

[Gary Hyland]

Statins and ALS

Hello, All,
The possible connection between statins and ALS is still being actively explored. One study at Northwestern University (July 6, 2006) reported that genetic variations in 3 enzymes , nerve gas exposure and cholesterol-lowering drugs "may be a risk factor" for ALS. A study at State University of New York (Buffalo) reports statins "may trigger symptoms off underlying, pre-existing conditions in muscles already compromised." The cautious wording suggests a need for more study and the possibility that a constellation of conditions may initiate the disease process.

Anyone who has taken statin drugs (such as Lipitor, Crestor, Pravachol etc.) and has ALS might want to contact Dr. Beatrice Golomb at the UCSD Statin Effects Study at [email protected] or call at (858) 558-4950 ext. 201. This team is working hard to learn more about the possible association bewteen statins and several neural and muscular disorders. They will send you a questionnaire that will help in their efforts should you complete and return it.

 

[mlb]

Curious

I don't understand why so many PALS were on statins? Is it as a means to reduce cholesterol? Something else? My brother was never on statins but I would like to know as I have friends who are on them right now but don't have ALS.
Anna

 

[Gary Hyland]

Anna,
Statins seem to help some people lower their cholesterol levels, but there is considerable evidence that a minority of users run into adverse effects, perhaps because statin use combines with other predisposing factors. There are several class action suits underway. You can learn more at this site:
http://medicine.ucsd.edu/ses/adverse_effects.htm or by doing a search under the heading "Statins Side Effects" and "Statins Adverse Effects." Sorry about the typo in my previous post giving a number to call for more information and/or participation in the statin study. It is (858) 558-4950 ext. 201 at the UCSD (San Diego).
Gary