More Bad News. :((((((

Status
Not open for further replies.

jayemcee

Active member
Joined
Dec 7, 2007
Messages
31
Country
UK
State
Bedfordshire
City
Leighton Buzzard
The global petition revealed that ALS was found among 5 statin takers in the 100 self-reported cases, which I had analysed. The sample was drawn from 259 people, of which some had not made any comments. There are now and additional 41 signatures (to 300 cases) and 2 more people have reported that they have developed ALS.

That makes a total of 7 people in 300 who have reported ALS. Lipitor was the statin taken in 5 of them. Please tell your friends and relatives never to take statins and please direct them to the global petition to sign against statin use.

The petition can be found here...
http://www.gopetition.com/online/11757.html

Thank you.
jmc
 

sherry0459

Active member
Joined
May 6, 2007
Messages
62
Diagnosis
03/2007
Country
US
State
Alabama
City
Jacksonville
I started taking Crestor befors my systoms...HUM? sherry
 

geehdee

Member
Joined
Jul 12, 2007
Messages
12
Reason
PALS
Diagnosis
10/2007
Country
US
State
AZ
City
Tempe
ALS after Lipitor

I was diagnosed with ALS after a few years on Lipitor. Not sure of the connection but am irritated with my PC for telling me "it's completely safe...I take it everyday myself!"
 

Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
I am also leery of all the "medications" that are prescribed so liberally, and the unknown side effects.

But numbers can be deceiving, when you look at the stats, they are not always directly comparable.

Estimates suggest that ALS is responsible for as many as five of every 100,000 deaths in people aged 20 or older. ALS is most common among persons over age 60.

Most people who develop ALS are between the ages of 40 and 70, although the disease can occur at a younger age.

The Majority of people on Statins are in the age group where ALS appears. ALS statistics are based on the whole population, so one must narrow the numbers to the same age group and compare at that point.

Tina
 

jayemcee

Active member
Joined
Dec 7, 2007
Messages
31
Country
UK
State
Bedfordshire
City
Leighton Buzzard
I am also leery of all the "medications" that are prescribed so liberally, and the unknown side effects.

But numbers can be deceiving, when you look at the stats, they are not always directly comparable.

Estimates suggest that ALS is responsible for as many as five of every 100,000 deaths in people aged 20 or older. ALS is most common among persons over age 60.

Most people who develop ALS are between the ages of 40 and 70, although the disease can occur at a younger age.

The Majority of people on Statins are in the age group where ALS appears. ALS statistics are based on the whole population, so one must narrow the numbers to the same age group and compare at that point.

Tina

Hmmm... I now have 8 cases in 308 reports and 6 people were taking Lipitor.

Probability = 1 divided by (50,000^8) = 2.56 × 10-38

0.000000000000000000000000000000000000026

that is probability of finding 8 cases reported in 308 case reports, gioven an incidence of 1:50,000
 

Thumbs Up

Active member
Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
Lipitor

This is scary, I have been on Lipitor for years. I am still trying to get the info to my sister's Dr in Bancroft. I don't know how to cut & paste. I am trying to figure out how you guys do the post and ad in blue to websites that you are refering to. I am also trying to have my neighbour print off the info so I can pass it on to my doctor because with him it has to be mailed or dropped off. I think in the meantime I better stop taking Lipitor.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
There Are So Many People On Statins That It Will Be So Hard To Prove. I Dont Think Statins Cause Als I Know The Side Effects Are Muscle Weakness But Thats Not Als. I Stopped My Staten Too Because I Dont Trust The Pharacuticals And My Neuro Isnt Happy. She Said A Stroke Would Be A Horrible Thing On Top Of Having Als My Lipids Are In The 300 Hundreds Pat1
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
My Neuro tol me to get off the statins. I take Ezetrol now. It just eliminates the cholesterol you eat not the stuff your body makes. Not great but better than the statins. I've been taking Lipitor for at least 10-12 years.
AL.
 

pldo

Distinguished member
Joined
May 30, 2007
Messages
146
Reason
PALS
Country
uni
State
unknown
City
unknown
My GP told me that I had high cholesterol but that statens were worse then having high cholesterol. She said that they can have horrible side effects not only on you, but also if you accidently get pregnant (know that this does not relate to the guys out there) they can have dire consequences to a fetus- if that is the case why would they prescribe these?
 

jayemcee

Active member
Joined
Dec 7, 2007
Messages
31
Country
UK
State
Bedfordshire
City
Leighton Buzzard
This is scary, I have been on Lipitor for years. I am still trying to get the info to my sister's Dr in Bancroft. I don't know how to cut & paste. I am trying to figure out how you guys do the post and ad in blue to websites that you are refering to. I am also trying to have my neighbour print off the info so I can pass it on to my doctor because with him it has to be mailed or dropped off. I think in the meantime I better stop taking Lipitor.

Norma: if you e-mail me at webmaster(at)talkingstatins(dot)com [remove the brackets and substitute @ for at and . for dot and make sure there are no spaces] and I will send you a pdf document of both the comments for the global petition and the analysis.

statins have not been shown to bestow any benefit on women, either for prinary prevention or secondary prevention. No woman should be taking statins. These are highly toxic preparations that mess with the body's ability to derive energy from food. When cells cannot get enough energy, the die.

It is called programmed cell death (apoptosis) and statins interfere with the production of Heme A in the mevalonate metabolic pathway (MMP), which is only found in the mitochondria of cells and is responsible for converting food into energy for the cell.

I can point you to a huge number of seriously abstruse and highly technical medical papers on the subject, if your doctor needs convincing. For now, just look at this illustration of the MMP. You will see how high up in the pathway statins are introduced (brown text). You will also see that all of the essential processes for cellular life (green text) are inhibited by statins because they are below the point where statins are introduced.

Mevalonate Metabolic pathway illustration here:
Oh dear, I seem to be experiencing a DOS issue... I will post the image soon. Alternatively, just e-mail me for it and I will happily send it.

Lowering cholesterol will not stop you getting heart disease. The heart is a muscle and statins weaken muscle. Statins also inhibit cholesterol production and cholesterol is need to produce the myelin sheath that protects all nerve fibres. My cholesterol has been 8.5 for all of my life and I utterly refuse to take statins. The latest research suggests that statins are implicate din ALS development.

I now have 310 signatories to the petition and there are another two people in the last 10 signatures, who have developed ALS. Six out of 9 admit to taking Lipitor. Epidemiologists will say that globally, ALS will affect 2 people per 100,000 (1:50,000) and I see 9 people affected in 310 case reports. Statistical acrobatics aside, I should collect 450,000 signatures before seeing this many people complaining of ALS. Clever statisticians will find a million excuses as to why I am wrong about this number.

I say to them that 9 cases of ALS out of 310 statin takers is a huge problem and only if you were blind, deaf and dumb as well as living on Pluto, could you fail to see it. I am writing to the FDA with my concerns. They have just turned down another application (from Merck) for statins to be made available as an over the counter medicine in the USA. Read about it here:
http://blogs.wsj.com/health/2007/12/13/fda-calls-for-research-on-lou-gehrigs-statin-link/

Please add your comments.
jmc
 

jayemcee

Active member
Joined
Dec 7, 2007
Messages
31
Country
UK
State
Bedfordshire
City
Leighton Buzzard
My Neuro tol me to get off the statins. I take Ezetrol now. It just eliminates the cholesterol you eat not the stuff your body makes. Not great but better than the statins. I've been taking Lipitor for at least 10-12 years.
AL.

Low cholesterol is undesirable, Al. statins are also undesirable. Here is a copy of something that I am unable to link to just yet...

jmc

Statins, Neuromuscular Degenerative Disease and an Amyotrophic Lateral Sclerosis-Like Syndrome: An Analysis of Individual Case Safety Reports from Vigibase.
Short Communication


Drug Safety. 30(6):515-525, 2007.
Edwards, I Ralph; Star, Kristina; Kiuru, Anne

Abstract:
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.

Discussion: Because the cases were sometimes atypical we propose the use of the term 'ALS-like syndrome' and speculate whether this is part of a spectrum of rare neuromuscular damage. The diagnosis of ALS is often problematic, and the insidiousness and chronicity of the disease make causality with a drug difficult to assess. 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.

Copyright 2007 Adis Data Information BV
 

jayemcee

Active member
Joined
Dec 7, 2007
Messages
31
Country
UK
State
Bedfordshire
City
Leighton Buzzard
My letter to the FDA:

Dr Eric Colman - Deputy Director: Division of Metabolism and Endocrinology Products

Dear Dr. Colman,
I am prompted to write to you with news of that which, on its face, appears to be a significant finding. I have been running a global e-petition, since April 3rd 2007, for the purpose of collecting sufficient signatures to encourage the World Health Organisation to initiate an impartial investigation into the risks that attend the use of statin therapies.

It has taken some time for the petition to become known about and I have recently analysed the first 100 signatures. The analysis can be found at the following URL, http://talkingstatins.com/page4/page33/page33.html The global petition can be found at the following URL: http://www.gopetition.com/online/11757.html

The petition was neutral about what people ought to write in support of their signature. (each signatory can append a 500 word commentary in support of their comments) After the analysis of the first 100 useful commentaries, I changed the rubric to reflect a desire to see more useful information being appended by the people who had chosen to write a comment in support of their signatures.

The resulting analysis had surprised me because many more people were experiencing what were obviously disruptive adverse reactions; to the statins they had been taking. The most noticeable adverse reaction was that 5% of the respondents had ascribed their development of Amyotrophic Lateral Sclerosis (ALS) to the fact that they had taken statins. Given the significant insult to several major processes within the mevalonate metabolic pathway, that follows the inhibition of cholesterol production with statin therapies, the conclusion that statins may be implicated in the development of ALS, among statin takers, is not beyond the bounds of reason.

As the number of signatories to the e-petition has started to climb, one noticeable trend is that more people are reporting the development of ALS. After 310 signatories (not all of whom have commented) the total number of people reporting the development of ALS, which they ascribe to statin treatment, now stands at nine cases, of which six people had reported that they were taking atorvastatin.

In the same sample of the population, one person had reported developing rhabdomyolysis and one person had reported what was described as a case of "near rhabdomyolysis". The incidence of rhabdomyolysis is thought to be 4 cases in every 100,000 patients, as can be seen from either of the following links. http://www.jr2.ox.ac.uk/bandolier/booth/cardiac/statmusc.html
http://jama.ama-assn.org/cgi/content/full/292.21.2585v1

The incidence of ALS in the USA and Europe is thought to be 2 cases in every 100,000 as can be seen from the following URL. http://www.neurology.org/cgi/content/full/68/13/E17

It is clear that, for my sample population of 310, I could have expected to see two cases of rhabdomyolysis to every one case of ALS. For 310 reports, I would have expected one occurrence of each condition. Nine cases of ALS suggests to me that either ALS is not being reported frequently, or that its development is on the increase and that it may be that statins are fomenting the increase. The incidence of ALS among so very few statin takers, would suggest to me that this is a very fruitful area for initiating future research efforts.

The widespread use of statins is predicated on the cholesterol/heart hypothesis, which has been comprehensively discredited by researchers investigating the links between heart disease and cholesterol since the work of the Framingham study and Ancel Keys had become instrumental in changing the way we perceive cholesterol and its role in our bodies.

Thousands of years of evolution did not equip our bodies with a statin-mediated regulatory mechanism for bringing down our dangerously high cholesterol counts. The literature appears to say, repeatedly, that lower cholesterol values are associated with earlier mortality. Regulatory bodies such as the FDA in the USA (and NICE in the UK) are apparently unable to include this revolutionary notion within their deliberations about statin therapies.

One could say much about the sample of the population that I have reported on and one could also find many reasons to exclude such a sample, based on their own self-reported and anecdotal evidence, from serious deliberation about the therapeutic value of any specific group of drugs. Many anecdotal reports about the adverse reactions to statin therapies are indicative of the highly toxic nature of this class of drugs.

The inhibition of Heme A within the mevalonate metabolic pathway presages the death of cells that can no longer derive energy from the food that we are eating. The work of Professor Bruce Ames is instructive: Bruce N. Ames, Ph.D. Professor University of California, Berkeley, Senior Scientist, Children's Hospital Oakland Research Institute; U.S. National Medal of Science; Research in delaying the mitochondrial decay of aging.

I can see that there are many technical considerations as to why statins may not be the causative agent in cases of ALS or ALS-like symptoms. Equally valid; I can see why there would be many reasons for a raised index of suspicion when one considers the toxic effects of statins that give rise to numerous adverse reactions that were not experienced by the patients before they had started to take statins to lower their cholesterol.

The medical profession appears to be unable to accept that there may be anything wrong with statin therapies. I commend the following link to you. http://www.thincs.org/NEJMcommenttoTNT.htm

My lay mind was suspicious of my findings and, at first, I thought that I must be mistaken. Accepting for one moment (for the sake of this discussion) that I am not mistaken, I wish to make a formal request that the FDA makes a determined effort to examine the possibilities raised by my letter. The FDA ought to insist on the closest scrutiny and reporting of the aetiology of every case of ALS, especially where one of the common factors was known to be a statin.

All of the petition material on the global petition website and the analysis from my own website, can be supplied as PDF files for your convenience, at your request.
 

Thumbs Up

Active member
Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
Wow,this makes my head spin.
 

Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
Hmmm... I now have 8 cases in 308 reports and 6 people were taking Lipitor.

Probability = 1 divided by (50,000^8) = 2.56 × 10-38

0.000000000000000000000000000000000000026

that is probability of finding 8 cases reported in 308 case reports, gioven an incidence of 1:50,000


I understand that you have 8 cases in 308, and yes I agree it seems to be a high number. Your calculation does not account for age groups, nor does it account for the fact that these 308 people are not randomly chosen, I think that when that is all accounted for you will see the number is much lower.

When you go to an ALS forum and have people fill out the questionaire, you have controlled the outcome.
 
Status
Not open for further replies.
Top