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Lipitor and ALS (Lou Gehrig's disease)

7.5K views 28 replies 11 participants last post by  marinemomtatt  
#1 ·
Hello people. I have never posted in this sub forum, but thank you for being here. Hoping someone here may have familiarity with this.

My brother in law's dad has had very declining health in the last year or so. Mostly, he's wore out just walking to the mailbox and back, etc. He goes to sleep in the middle of the day to recover from very small things like this.

Recently, a doc suggested to him he has ALS and maybe a year to live. :eek::(

This is strange because he's been seen very regularly by doctors, and it is quite unheard of to develop ALS at senior citizen level. He's about 78 years old.

My sister in law did some internet searching and found some people who claim they had many symptons identical to ALS and then found that stopping their Lipitor (for cholesterol control) resulted in their symptoms subsiding.
Symptoms in true ALS do not digress, only stabilize or progress, right?

Has anyone here found Lipitor to be a culprit of something like this??

My SIL is very concerned as BIL takes Lipitor too. So many drugs have side effects we don't really get told about, and/or are aware of.

I apologize that I can't site any stories for you at this time.. just going on what I was just told. All I know right now is the family plans to do some more looking and asking with doctors about what validity they may agree with that the Lipitor could be contributing to in his case.

When I am able, I will post some links to some of what SIL has told me.

Thanks for any comments that might help determine credibility to what's been found so far.
 
#2 ·
Patients who have issues with statin drugs such as Lipitor have a difficult time convincing their doctors that they have those problems. In my case there were two statin drugs: the first one, Baycol, helped me gain 10# that I didn't need in 2 months and the second one, Lipitor, also helped me gain unneeded weight...25# in 7 months. This happened eight years ago, and unfortunately I've never lost that 35# nor have I gained any more. If it weren't for the rash that I developed, my doctor would have insisted I stay on the Lipitor...my cholesterol dropped to near normal numbers. There were other things as muscle pain, memory lapses, and even after stopping the Lipitor I had difficulty with healing tendonitis. And now I will not ever take another statin med. Most people don't have side effects bad enough to quit the statins but there are some who cannot take them.

Read Beatrice Golomb, MD at http://ucsdnews.ucsd.edu/newsrel/health/01-09Golomb.asp. The space doctor Duane Graveline also had a serious side effect while taking Lipitor.

It's best to investigate reading all you can before and during use of medications...amazing what you will learn.
 
#3 ·
Thanks nappy..
What did you do to maintain your cholesterol after stopping the statins?
 
#4 ·
Thank you Karen. I asked about posting this link. Being a newbie here, I may not be familiar with how you all go about these types of questions.

Okay here's a link to an article with tons of reader comments. This is just one of several similar findings my SIL had when researching. There are obviously going to be contradictory medical opinions to be found.

http://www.peoplespharmacy.com/2009/07/31/statins-and-als/

I'm amazed at how many have these ALS-like symptoms. If anyone here has had this happen - or had someone they know experience this - what do you do as an alternative?

I am familiar with garlic, some juices, quality omega oils, etc. being good for reduction of cholesterol. But if you've been on the medicine and seen your cholesterol level change pretty drastically as result, then how did you establish those results, or pretty close, without the meds?

I dare say.. sometimes I think the stuff that gets "treated" is better left to do its own damage than the damages caused by the "treatment." I suppose it becomes a quality of life choice in some cases.

Thanks!
 
#5 ·
ALS is a progressive disease that can only be slowed. There is no test to say someone has it for certain they can only rule out other things with similar symptoms.

Lipotor can cause weakness and fatigue but then so can many other things.
 
#6 ·
Statins are the most dangerous drugs on the market. I would never, never, never take them. Your brain is made of cholesterol. If you destroy cholesterol, you destroy your brain.
Not everyone believes cholesterol is what causes heart issues.

[ame]http://www.google.com/search?q=statins+cause+brain+disorders&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:eek:fficial&client=firefox-a#q=alternative+medicine+statins+cause+brain+disorders&hl=en&client=firefox-a&hs=bgl&rls=org.mozilla:en-US:eek:fficial&prmd=imvns&ei=nZrBTuntN4n_ggeMrp2nBw&start=20&sa=N&bav=on.2,or.r_gc.r_pw.,cf.osb&fp=9ed4e4ba2832568&biw=1333&bih=608[/ame]
 
#7 ·
I am familiar with garlic, some juices, quality omega oils, etc. being good for reduction of cholesterol. But if you've been on the medicine and seen your cholesterol level change pretty drastically as result, then how did you establish those results, or pretty close, without the meds?

I dare say.. sometimes I think the stuff that gets "treated" is better left to do its own damage than the damages caused by the "treatment." I suppose it becomes a quality of life choice in some cases.

Thanks!
~~~~~~~~~~~~~~~

Since I had so many problems with statins, I decided that my quality of life did not match what my doctor was trying to achieve with my life. Maybe I'm in denial but I believe that cholesterol is not as large a problem as what the medical field states. Cholesterol is a necessary nutrient throughout our bodies especially in the brain, and statins are not selective about which cholesterol is destroyed. After all it is my choice to die of high cholesterol or die slowly from the "cure" if what they tell us is true. Since refusing to take any more statins, I have taken fish oil but it hasn't been very effective according to my lab results. Recently I tried Niacin because again the doctor said I need to lower my cholesterol. For me Niacin was another disaster...had an immediate reaction of the type I don't want to repeat. Figured that the reaction I experienced was "flushing" but for over an hour I thought that I was dying! No, won't do that again. :grumble:
 
#8 ·
If his doc says he has a year to live, what is the downside of stopping the statins?

I absolutely refuse to take statins. I tell doctors if my levels get above 400 I might consider it, but no. A mind is a terrible thing to waste.
 
#9 ·
I'm a pharmacist and know of no link between statins and ALS, but there are a lot of people who found out that their "fibromyalgia" went away when they stopped taking statins. They can cause muscle destruction (rhabdomyolysis) and are hard on your liver. I really don't think they should be used unless a person has dangerously high cholesterol levels (>300, that kind of thing).

Last summer, I had a temp job at a place that serviced nursing homes, and couldn't get over how many people in ther 80s and 90s with Alzheimer's and other incurable chronic diseases were on these meds. :stars:
 
#10 · (Edited)
~~~~~~~~~~~~~~~

Recently I tried Niacin because again the doctor said I need to lower my cholesterol. For me Niacin was another disaster...had an immediate reaction of the type I don't want to repeat.
The flushing?
Low flush niacin or slow release niacin is very dangerous for your liver. You really need the normal, instant relief niacin, but it causes itchy, red, flushing. Basically it gives you an immediate hot flash of high intensity. But it isn't dangerous, just uncomfortable. Sometimes it helps to take aspirin before you take the niacin, to help reduce the flush.
 
#11 ·
There are many good food sources for Niacin...Jerusalem Artichokes... if I didn't have a cat crawling all over my head and shoulders I'd be able to remember others...~lol~...
The problem with statins is that they only treat the symtoms, not the cause.
 
#12 ·
Unfortunately, you have to take large doses of niacin to drop cholesterol. I don't think foods would supply therapeutic doses.
The drug companies have actually jumped on the niacin band wagon too with the drug NiaSpan. But it is also a slow release niacin, so it is bad for the liver.
[ame]http://www.google.com/search?q=Niaspan&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:eek:fficial&client=firefox-a[/ame]
 
#13 ·
We just lost an elderly friend who was Dx'd with ALS at 86. I have read everything I can find and find nothing that agrees with the idea that this is an elder illness. The only people I have ever know with it were in the 30-40 age group.
 
#14 ·
IMO... FARMed Niacin is a lot safer and more health-ful than PHARMed Niacin.
With FARMed one need'nt worry about liver damage and side effects (unless one is allergic to certain foods)
Here's a short list of 'high' niacin foods;
brewer's yeast
sunflower seeds
peanuts

Niacin in smaller amounts
wheat germ
brown rice
converted rice
peas
dates
figs
avocado
barley
beans, green
greens
lentils
sweet potatoes
raisins
so on and so on....there are many sources for Niacin that can be included and eaten daily.
 
#15 ·
Thank you for posting this info. A co-worker of mine has a brother that was recently diagnosed with ALS. I will be sharing this info with her.

My grandmother was put on cholesterol lowering meds when she was in her late 70's. I never could understand why the doc insisted she take those meds. Looking back I believe that was the beginning of her downturn.
 
#16 · (Edited)
IMO... FARMed Niacin is a lot safer and more health-ful than PHARMed Niacin.
With FARMed one need'nt worry about liver damage and side effects (unless one is allergic to certain foods)
Here's a short list of 'high' niacin foods;
brewer's yeast
sunflower seeds
peanuts

Niacin in smaller amounts
wheat germ
brown rice
converted rice
peas
dates
figs
avocado
barley
beans, green
greens
lentils
sweet potatoes
raisins
so on and so on....there are many sources for Niacin that can be included and eaten daily.
I agree with you. But to lower cholesterol significantly you need 2-3g of niacin a day. Can you eat that much in foods? If you can it would be great.
It's hard to find the regular niacin supplements on the market, they only have the flush free or slow release kind in most places. And those are very dangerous to your liver. So when people look for Niacin, we should be sure to specify that we want the flush or the fast release niacin.
I do think the NiaSpan is probably dangerous too because it is a slow release. But I don't know for sure because I really haven't heard a lot about it. But unfortunately, all of the slow release, flush free products hurt the liver even in the small half gram doses. It is interesting that big Pharma is also jumping on the niacin bandwagon. They just did it in a way that they can patent. Profits over people, and all that, you know.
 
#17 ·
I wanted to add that to reduce triglycerides simply cutting carbs drastically will reduce those. They aren't really caused by fat intake at all, but rather by sugar. In fact, low carb eating habits will reduce cholesterol.
 
#18 · (Edited)
Wow, thanks you all for the replies!
I just now checked and didn't realize there were several posts.

~~~~~~~~~~~~~~~

Since I had so many problems with statins, I decided that my quality of life did not match what my doctor was trying to achieve with my life. Maybe I'm in denial but I believe that cholesterol is not as large a problem as what the medical field states. Cholesterol is a necessary nutrient throughout our bodies especially in the brain, and statins are not selective about which cholesterol is destroyed. After all it is my choice to die of high cholesterol or die slowly from the "cure" if what they tell us is true. Since refusing to take any more statins, I have taken fish oil but it hasn't been very effective according to my lab results. Recently I tried Niacin because again the doctor said I need to lower my cholesterol. For me Niacin was another disaster...had an immediate reaction of the type I don't want to repeat. Figured that the reaction I experienced was "flushing" but for over an hour I thought that I was dying! No, won't do that again. :grumble:
I'm sorry you had that happen. I agree fully with your choice. ETA - I just wanted to throw in that the quality of fish oil does make a difference in how well it's absorbed and how much of the beneficial omegas it offers. From what I understand, fish oil harvested from very cold water and processed in a certain way has a lot more absorption than say.. the quickie store fish oil with same number of units might.

If his doc says he has a year to live, what is the downside of stopping the statins?
Nothing. I totally agree. It's just that with majority of folks in my parents' generation, they are usually very trusting of docs. You need some backup to help convince them they should defy what's recommended. I know my own parents both take statins and I can't imagine trying to make this argument with them. It worries me for sure, but very hard to approach and get results. Belief in what you're doing has a lot to do with the outcome, I think.

Unfortunately, you have to take large doses of niacin to drop cholesterol. I don't think foods would supply therapeutic doses.
The drug companies have actually jumped on the niacin band wagon too with the drug NiaSpan. But it is also a slow release niacin, so it is bad for the liver.
http://www.google.com/search?q=Nias...=Niaspan&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
I agree with you. But to lower cholesterol significantly you need 2-3g of niacin a day. Can you eat that much in foods? If you can it would be great.
It's hard to find the regular niacin supplements on the market, they only have the flush free or slow release kind in most places. And those are very dangerous to your liver. So when people look for Niacin, we should be sure to specify that we want the flush or the fast release niacin.
I do think the NiaSpan is probably dangerous too because it is a slow release. But I don't know for sure because I really haven't heard a lot about it. But unfortunately, all of the slow release, flush free products hurt the liver even in the small half gram doses. It is interesting that big Pharma is also jumping on the niacin bandwagon. They just did it in a way that they can patent. Profits over people, and all that, you know.
I totally agree that each of us should choose if we'd rather have to deal with the effects of high cholesterol vs. the effects of the meds!

I'm wondering about the niacin. Isn't it a little like vitamin K? What I mean is if niacin is hard on your liver, then maybe ingesting the small amounts naturally available in foods on a regular basis could "build up" and actually do some good?

Danaus I hope your coworkers family checks out all the info available, and best to them.
 
#19 ·
I was put on statins a few weeks ago and I have frankly felt like crap...Achy, moody(more than usual) and just well...icky! I hate to stop taking then as my Dr acts like I Am a walking cube of cholesterol. :(
Thanks so much for the question op, and to all the posters with wonderful answers. Much to think about and research.
 
#20 ·
I'm wondering about the niacin. Isn't it a little like vitamin K? What I mean is if niacin is hard on your liver, then maybe ingesting the small amounts naturally available in foods on a regular basis could "build up" and actually do some good?
Niacin is a B vitamin. It's water soluble, so it doesn't build up in your body. In the regular form, it causes flushing, like hot flashes, so it can be uncomfortable. So, they made a slow release form or flush free or whatever else they want to call it. But that is bad for your liver. To significantly lower cholesterol you have to take over 2-3 grams a day which is 2000+ milligrams. You can't get that much from food in a normal diet.
 
#21 · (Edited)
I wanted to add that another option is B5 which is pantothiene (sp?) It is great for heart failure. I use to take 5000mg of both B3 and B5 a day each because that was what Pauling suggested before he passed. But now the whole Pauling website is watered down and pretty useless. The same thing has started happening to Dr. Atkin's site too, which is a shame. And it is hard to find a good B3 (niacin) that is the regular fast release kind. The slow release can cause liver failure even in smaller doses, so it should be avoided.

And don't forget arginine which is also wonderful to relax blood vessels and allow more blood flow. That is what viagra actually is, just in a patented form.
 
#22 · (Edited)
Aw shoot Mekasmom..
I was thinking it was the other soluble (fat?). Thank you for the info.

I am so terrified when I think about what we've done to so many people. My BIL, son of the man I posted about, also takes Lipitor. He's only 52. Me and his wife are convinced we can get him to decide with info that he may choose to quit taking it. (You like how I phrased that? Nobody's forcing this guy, but I'm just sayin I think he's read and listened with an open mind and will decide that way). :)

I still don't think I can get anywhere with my mom and dad. Fortunately, my 85yo daddy has extremely good health even though he takes a statin and one other thing. My 78yo mom though.... she worries and runs to the doc for every single feeling she experiences. :bash: I have subtly tried to sway her general way of thinking, but with not much success. If you go to MOST doctors these days and report any episode of discomfort or inconvenience, they'll hand you a scrip for the latest thing to try. The only one I've talked her out of is the antidepressant, which she wasn't that keen on taking in the first place.

Mekasmom!! Just caught your last statement..what? viagra could be useful??? I gotta google arginine.
 
#24 ·
Here's an update on the original post.

Saw specialist today, and he's sticking with the diagnosis of ALS. However, when asked about Lipitor and these symptoms, the doc said "Quit taking it immediately." He also looked at the wife and said you too.. stop taking it now.

Their son, my BIL has not taken his for a week now, and will discontinue also. He was prescribed Lipitor AND Tricor both. Don't know exactly why. but at least two of these folks will now have to deal with their next bloodwork/checkups for levels and telling the doc they are not taking their statins.
SIL continues to research and recommend any alternatives, many of which discussed here.

We carry on!
 
#25 ·
My hubby takes baby aspirin, fish oil and apple cider vinegar and vitamin d3 and b complex along with an apple a day and oatmeal for breakfast. He went from 300 to 188. get off the drugs just watch his diet. have his cholesterol check after you switch. taper down don't go cold turkey the body don't always like it. These drugs affect your liver so go off slowly.
 
#26 ·
My hubby takes baby aspirin, fish oil and apple cider vinegar and vitamin d3 and b complex along with an apple a day and oatmeal for breakfast.
Has he been muscle tested for the ACV? I only ask because I took that daily for a long time too, but when the naturopath muscle tested me, I tested much stronger for lemon juice and lemon essential oil. I'm just curious if everyone is like that or if it was just me.
Don't get me wrong ACV is good, but for me the lemon is better, so I was just curious if it was actually stronger or if it is just better for me personally.