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-   -   Anyone here on statins??? (https://www.neurotalk.org/peripheral-neuropathy/21456-statins.html)

Yorkiemom 06-09-2007 10:16 AM

Anyone here on statins???
 
From the ALS board:

Default Statins and ALS-like syndrome
Statins and ALS-like syndrome



Drug Saf. 2007;30(6):515-25.

Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase.Edwards IR, Star K, Kiuru A.
The WHO Foundation Collaborating Centre for International Drug Monitoring, the Uppsala Monitoring Centre (UMC), Uppsala, Sweden.

BACKGROUND: The WHO Foundation Collaborating Centre for International Drug Monitoring (Uppsala Monitoring Centre [UMC]) has received many individual case safety reports (ICSRs) associating HMG-CoA reductase inhibitor drug (statin) use with the occurrence of muscle damage, including rhabdomyolysis, and also peripheral neuropathy. A new signal has now appeared of disproportionally high reporting of upper motor neurone lesions.

AIM AND SCOPE: The aim of this paper is to present the upper motor neurone lesion cases, with other evidence, as a signal of a relationship between statins and an amyotrophic lateral sclerosis (ALS)-like syndrome. The paper also presents some arguments for considering that a spectrum of severe neuromuscular damage may be associated with statin use, albeit rarely. The paper does not do more than raise the signal for further work and analysis of what must be regarded as a potentially very serious and perhaps avoidable or reversible adverse reaction, though it also suggests action to be taken if an ALS-like syndrome should occur in a patient using statins.

METHODS: The 43 reports accounting for the disproportional reports in Vigibase (the database of the WHO Programme for International Drug Monitoring) are summarised and analysed for the diagnosis of an ALS-like syndrome. The issues of data quality and potential reporting bias are considered. RESULTS: 'Upper motor neurone lesion' is a rare adverse event reported in relationship to drugs in Vigibase (a database containing nearly 4 million ICSRs). Of the total of 172 ICSRs on this reported term, 43 were related to statins, of which 40 were considered further: all but one case was reported as ALS. In 34/40 reports a statin was the sole reported suspected drug. The diagnostic criteria were variable, and seven of the statin cases also had features of peripheral neuropathy. Of a total of 5534 ICSRs of peripheral neuropathy related to any drug in Vigibase, 547 were on statins. The disproportional reporting of statins and upper motor neurone lesion persisted after age stratification, and such disproportionality was not seen for statins and Parkinson's disease, Alzheimer's disease, extrapyramidal disorders, or multiple sclerosis-like syndromes.

The disproportionally high reporting makes this an important signal nevertheless, since ALS is serious clinically and statins are so widely used. Wide use of the statins also makes a chance finding more probable, but is unlikely to cause disproportional reporting when there are no obvious biases identified.

CONCLUSION: We emphasise the rarity of this possible association, and also the need for further study to establish whether a causal relationship exists. We do advocate that trial discontinuation of a statin should be considered in patients with serious neuromuscular disease such as the ALS-like syndrome, given the poor prognosis and a possibility that progression of the disease may be halted or even reversed.

PMID: 17536877 [PubMed - in process]

cyclelops 06-09-2007 03:18 PM

Good info
 
I believe that statins have been implicated before in PN. Patients need to be monitored for rhabdomyolisis (muscles breakdown) via blood testing.

I think statins save lives, however, they do have drawbacks, as do most medications.

We have to weigh our risk versus benefit ratio and accept whatever decisions we make....(Like I really regret having selective spinal nerve root injections big time.)

flsun01 06-09-2007 04:58 PM

Got real suspicions about statins.....
 
...since contracting my rapidly progressing Polyneuropathy, ( tip of the toes to top of the head in two weeks). We may find that statins are the Thalidiomide of today. You won't see a rush to confirm any results that are detrimental to a drug that makes big Pharm 11 billion a year in sales.

cyclelops 06-09-2007 05:38 PM

It is amazing at the rapidity that Big Pharm gets some of its drugs on the market, then drugs for orphan diseases don't get approved or get cut.

I am not a big fan of Big Pharm, the insurance industry etc.

When you are on the inside of the health care system, you see some stuff you would rather not see.

My doc jokes about what 'poisons' I have tried....he really isn't kidding, it is just sarcastic truth.

I can see if weight loss and exercise do not do the trick or are for some reason contraindcated, or you have familial hypercholesteremia, then you don't have options....I think that is what pharmaceuticals are supposed to be for, when you do not have other options and you need, absolutely NEED to take a drug.

I also do not like the algorithms the insurance companies set up before you can get a specific medication....first you have to try this, than that, then this...then you can have what really works...until your doc leaves and you can start all over again...or until your insurance plan changes and you need a new doc....

Who made things this complex?

I have to laugh at the OTC pain med commercials....the faces on the actors, when they are in such humungous pain as they bend over and a simple OTC pill solves their problem, geez, how bad can it be??

The other thing I totally do not understand is prescription drug commercials.

mrsD 06-09-2007 05:41 PM

Big Pharma....
 
The newest confusing commercial is for Celebrex...IMO :yikes:

(sorry I am enjoying the yikes icon this week) :yikes:

Silverlady 06-09-2007 06:24 PM

drug sales
 
:D :cool: :D

You made me laugh too!! I got a real chuckle out of that post. But it is a serious problem. I see a new pill shoved at my Dad (80) and my step-Mom (72) on almost every doctor trip. I had a doctor's appt. right before noon this week and my doctor is always running late. I can't tell you how many thin, attractive young females with short skirts or tight pants I saw sitting in the doctor's waiting room (several doctors in one practice) all dragging a suitcase on wheels with drug supplies sticking out of it. I think they deliberately pick the girls, tell them how to dress and send them out to tantalize the doctors with drugs. And what's with this screen in the waiting room? silence, then it suddenly comes on with blaring music, tells you what drug and for what, then silence, then repeat of the whole cycle.

Am I cynical? Yes. It pays to be.
Billye

Jomar 06-09-2007 06:25 PM

I was started on Lipitor at nearly the same time as acquiring RSI- repetitive strain injury/s -ongoing upper body muscle pain.

After a year of not much progress with the RSI {evolved into TOS?}
and various other odd symptoms -I looked up info about statins on many alternative and wellness websites.

A few things happened at about the same time frame- I decide to go off Lipitor as I was going to have to pay 129.00 a month, I wondered if some of my muscle pain and odd sx were caused by the Lipitor, my gramma had 300+ cholesterol and lived to be 93.
But on the flip side she did have total Alzheimer's for many yrs before she died. But no heart problems!
So one of my questions is - can high cholesterol have an effect in the brain - ie Alzheimer's??

So anyway about the same time of going off Lipitor I also had found a very good chiropractor and an advanced PT guy- both were of great help for my RSI/TOS as I call it now.

I began to have much less pain and sx and also the odd sx faded away- so I can't say for sure if it was just from going off the statin or from the better PT and chiro care. Most likely a combination of both.

cyclelops 06-09-2007 06:39 PM

High cholesterol can cause athersclerotic plaques to develop in the brain resulting in dementia. It is difficult to tell dementia from Alzheimer's symptomatically....Age 93 is not half bad!

glenntaj 06-09-2007 07:57 PM

Not a big surprise--
 
--a number of us believe that statins may be the next big drug scandal, with poorly reported deleterious side effects that might dwarf those of the COX-2 inhibitors.

The sad part of this is that a good deal of evidence has accumulated over the years that no-flush niacin (and some fiber and fish oil) can be just as effective in controlling blood lipids:

http://www.ncbi.nlm.nih.gov/sites/en...&dopt=Citation

http://archinte.ama-assn.org/cgi/con...act/160/8/1177

http://www.ncbi.nlm.nih.gov/sites/en...&dopt=Abstract

http://jama.highwire.org/cgi/content...ct/284/10/1263

There's a lot more out there, but a lot of it dates from 10-15 years ago; with the advent of a new generation of statins, a lot of this clinical info has been shoved into the background--I imagine it's because companies can't make the money off of niacin that they can off statins . . .

mrsD 06-09-2007 08:18 PM

a novel treatment~~~
 
My parotid glands on both sides have been swelling, and I had the doctor look at them too. She said with age, the saliva gets thick/sluggish and can't come out well. Treatment? Something SOUR twice a day--- like Jolly Ranchers!
A very sweet and doable treatment! LOL And it is working too LOL

There are studies out there that correlate longevity to higher cholesterol levels.
I have posted them countless times.

those interested can check:
http://www.ravnskov.nu/cholesterol.htm

Dr. Graveline's experience and resultant book: Liptor, Thief of Memory:
http://www.spacedoc.net/lipitor.htm
check out his whole website...it is a real eye opener!

And this geriatric paper:
http://www.cmellc.com/geriatrictimes/g040618.html

Keep in mind that most of the studies that hit the media are paid for by the drug companies. It parallels the misleading studies done with HRT therapy.
Wyeth had doctors believing estrogen prevented Alzheimer's, but the HERS study (which was terminated early because of horrible events) actually showed double incidence with HRT.

European studies are usually the first to come up with truthful data. The PN connection came from Denmark or Netherlands I believe.

The bottom line? Data is massaged to make statins look good. As time passes we are beginning to get trickles of the truth and I expect more to be forthcoming.

shiney sue 06-09-2007 09:09 PM

Hi
 
First fish oil was recommeded in the late 60's early 70's it what very in,
as we said in those days. Then same thing happened like the b12 deal.
Drs. oh you don't need that,but they sure had you taking B12 for years .
Fish oil didn't go over and last like B12. Why because of overpriced
Miracle Drugs. You now can get a script for Fish oil,over a hundred dollars
and honest the young Drs. will say what do you mean they recommeded
fish oil in the 60's and 70's like it never happened. My Pharmacist when
your insurance turns it down will hand you a bottle of inexpensive,but
same thing boy Cyclclops is so right you see it all.

My cousin was one of those attractive girls Billlye was talking about. She
told me all about the PN,and horribal muscular side effects of Stanints.
She married a Dr. and on the wedding invitations they requested no presents
I just had to call her mom,huh i said did i read that right NO PRESENTS.
She just said he has 2 homes and she has a Condo the Pharmacutical
companies,well let's say have perks. Just how many appliances does one
need.

Just one more thing,if you are in a nursing home and are told these meds
are good for you,unless you have a caring family watching over you,you
just might take them. Not asking Why? This is a bummer post for me to
to be posting. My son's best friend stoppped being a nurse a month ago.
He just got tired of reporting these things and the world lost anonther
good nurse,he was taking the frustation home to his family. As for the
the answer no Cathie i couldn't take them or those TV commercials.:( Sue

joca2002 06-09-2007 11:48 PM

I started to get peripheral neuropathy prior to my chemotherapy. After chemo it was so bad we kind of forgot that I had it a little bit (big toe only) BEFORE the chemo. When I questioned whether the high dose of statins I was on could have played a role in the pre-chemo PN, my doctor told me that all the studies showing a link between statins and PN were highly questionable and did not have much credibility
My question to the group is..what do you think about that statement and can anyone point me to credible studies showing this link?
Thanks for your help
John:cool: :cool:

mrsD 06-10-2007 06:35 AM

The Danish study...from 2002
 
http://www.sciencedaily.com/releases...0514075710.htm

Remember that the spin meisters the drug companies use, are very good
at defusing doctors' questions. This was illustrated well during the Vioxx
incident.

My own doctor was led to believe that Liptor could REVERSE plaque. Which is totally untrue.

More scary data:
http://care.diabetesjournals.org/cgi...full/28/8/2082 from 2005

http://jech.bmj.com/cgi/content/abstract/58/12/1047

http://qjmed.oxfordjournals.org/cgi/.../full/97/4/229 personality changes

http://www.annals.org/cgi/content/full/139/9/792

http://www.tga.gov.au/adr/aadrb/aadr0504.htm

I personally agree with the one paper, that neuropathy presenting in diabetic patients may be misdiagnosed if a statin is being used as well. This would definitely increase the # of reports. After the patents are expired on Lipitor, I think we will see more data on the pitfalls of statins. Liability suits go the the patent holder (Pfizer) and typically in postmarketing situations, where danger exists, the original patent holder then releases negative data that they have been holding all along.

nide44 06-10-2007 08:09 AM

I was having s/e from Lipitor and Mrs D steered me to Zetia, way before the TV comm'ls started. I had to bend my doc's arm to make her take me off statins. She was thinking that Lipitor was the new miracle drug. (Big Pharm propaganda and low cholest results rom some of her other patients) She was dubious that Zetia would be successful in my case. I proved her wrong, and have been taking it for over 3 yrs now.

Yorkiemom 06-11-2007 12:38 AM

Well, my dad sure is in a mess, apparently from taking statins and he will NOT listen to anything I say about this. Meanwhile, I think he is getting worse. When I called him the other morning, he was unable to even get out of the bed due to severe weakness...

I sent a copy of the above to his wife to take to their hard-headed doctor this week. Guess we will see what happens... I can pretty well guess. He will get mad, and my dad will continue taking them...

My own Internist takes statins and believes they should be put into the drinking water...

Cathie

Yorkiemom 06-11-2007 12:41 AM

Hello MrsD
 
"European studies are usually the first to come up with truthful data."

Why is this?

Cathie

daniella 06-11-2007 05:17 AM

You should see at my psych doc office the waiting room is filled with reps and they get free lunches and goodies every time I'm there. I think bribery should not be. You would be amazed when I have been inpatient how I go in on nothing and come out on like 10 different pills which my insurance does not cover. I think meds can help and did for me in the past with ocd/anxiety and trying now for this issue but I do feel many docs look for the easy or quick try rather then looking at other possibles. I also wonder if docs really keep up with what they prescribe. I don't know about statins but I hope your dad feels better and sees things from different sides.

Yorkiemom 06-11-2007 09:38 AM

Thanks for that Daniella. I guess I will find out what happens on Wednesday.

About the drug company reps... You should see the medical buildings next to the hospital where I see a lot of my docs... Around the lunch hour, they are run over with these drug reps, who are pushing in carts of food, setting up lunch in the various doctors' offices and CAUSING YOU TO HAVE TO WAIT SOMETIMES ON AN APPOINTMENT WITH YOUR DOC... It is really outrageous. Sometimes there are so many, you cannot even get on the elevator.

I think the next time I go over there, if I see any, I will tell them my daughter wants to rep for a drug company, and ask them what kind of education she would have to have. I doubt that most of these people are educated in a manner in which they really know how drugs work and who they are best suited for...

There should be federal legislation introduced to prohibit the kind of behavior that drug companies use which makes it appear they are influencing physicians to prescribe their products...

Just my opinion,
Cathie

mrsD 06-11-2007 12:40 PM

European studies tend
 
to be independent of drug company control. For example, much of the negative data on hormone replacement therapy was done in Europe all the while those drugs were #1 in USA. Same with cell phone data/and brain tumors.

Most drug reps do have a college education, but it tends to be business types.
I have met two physical therapists along the way. But pharmacists and doctors are now discouraged. (they tend to balk at lying).

If you want to read about how "sterling" the drug rep business is....go to
www.cafepharma.com and click on "boards" and pick the Darkened Sample Closet (under General discussion) and/or the company boards. It is not for the faint of heart! You may be even shocked. Pfizer for Lipitor.
Lilly is interesting, they call Lilly WeLie Lilly. (Lilly has a long track record of lying during studies...goes back to Oraflex which killed people, includes Prozac lies, Cymbalta lies, and BIG Zyprexa lies).

This one is interesting:
http://www.cafepharma.com/boards/sho...d.php?t=208331
"what skills have you learned to transfer to another job if you left Pharma?"

Eli Lilly board:
http://www.cafepharma.com/boards/sho...d.php?t=207917
Cymbalta + Liptor warning discussion

Here is a doosey on "fake calls"
http://www.cafepharma.com/boards/showthread.php?t=89452

Since some here use Cymbalta, here is another doosey:
http://www.cafepharma.com/boards/sho...d.php?t=207484

(and no, I don't post there, none of it is ME! LOL). But I do read it occasionally. These are the tamer examples I could put up here, others would not be appropriate, and you'll have to discover them yourselves!

What drug companies do is an intense educational overview for reps with selected drugs. This may take a month for them, and is very narrow in scope. The companies have access to data about their competitors, and specific things they will divulge. During the Vioxx revelation, memos were published showing reps how to deflect and not answer questions about cardiac involvement. None of the negatives about SSRIs were divulged until the Attorney General of NY sued Glaxo for example, about Paxil. As the SSRIs went off patent more and more was revealed. For example there are studies showing Paxil does not work in children! (kept secret), and some studies showed Prozac less effective than placebo!
Most drug reps are chosen for personality style, (good verbal command) and appearance. You never see an average person selling drugs. They all dress to the hilt and have some sex appeal, now. Many have simple B.As. or business degrees. When I started in my profession there was a requirement that drug reps be pharmacists or doctors. That flew out the window sometime in the 80's. (perhaps earlier for some companies). And I have heard some stories about sexcapades with doctors. Best trait to have above all is to be a good convincing LIAR.

stagger 06-13-2007 08:57 AM

Whether you approve of Mike Moore or disapprove of him be sure to see his latest flick "SICKO"

Yorkiemom 06-14-2007 04:37 PM

Dan:

I don't think she will answer, but I believe doctors consult with her to relearn everything they missed in med school... :) Sooo. Maybe she does doctor makeovers... :) :) :)

Cathie

stagger 06-15-2007 10:12 AM

mrsd
 
I have followed your posts and find them not only informative, educational, but mainly factual. If you were ever to cease posting the vast amount of knowledge you possess we'd all be up the creek without a paddle. Hope you didn't mind my referring to you as MrsD on the old BT as typing is not one of my better skills:o
Lanny

DanP 06-17-2007 04:04 PM

Aha! I see I can delete my posts so I just did delete the question I asked mrsD. The question was inappropriate and mrsD and I have corresponded privately and I appologized and all is well.

mrsD 06-17-2007 04:46 PM

Thank you, Dan...
 
wow...I didn't know you could delete after this length of time!

Learned something new today...

Thanks Dan! ;)

MelodyL 06-17-2007 07:40 PM

Dan:

How can you delete a post?

Thanks, Melody

mrsD 06-17-2007 08:11 PM

to delete..
 
you go to the edit function when you are signed on, and click the delete button that appears under the text box.

I thought we only got edit/delete for 24 hrs...but delete appears to work longer.
I tried edit and was denied. So only the delete button works. You cannot delete your post if it is a thread starter one, however.

I've never tried this, so I learned something today! ;)


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