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insecticides, nerve gas and statin drugs and PON

eml256
0 Recommendations

Northwestern University
Variations in detoxifying genes linked to Lou Gehrig's disease
Genetic variations in three enzymes that detoxify insecticides and
nerve gas agents as well as metabolize cholesterol-lowering statin
drugs may be a risk factor for developing sporadic amyotrophic lateral
sclerosis (ALS, or Lou Gehrig's disease), and possibly responsible for
a reported twofold increased risk of ALS in Gulf War veterans.
These findings, from a study led Teepu Siddique, M.D., and colleagues
at Northwestern University, open the door to investigating
gene-environment interactions as a cause of ALS and other illnesses and
to the development of molecular targets for specific treatments. The
study was published in the August 22 online issue (available now) of
the journal Neurology. (http://www.eurekalert.org/pub_releas...-vid070506.php )

Explore topics in this discussion:

High cholesterol Surgery Lipitor Amyotrophic lateral sclerosis (ALS) Riluzole Zocor Parkinson's disease Stress Asthma Heart disease Tricor Hospice care Stroke Viagra Foot drop Hypertension Alzheimer's disease ALS Heart attack

30 replies

Ann8

I would be interested in knowing if there is anyone in this group whose symptoms started after starting statin drugs. Ann

teriqueen

My husband had been on Zocor (statin drug) for about two years before his DX last year. You might want to know also that the University of San Diego is sending out questionairs on this very subject. If you are interested in participating please let me know and I will forward you the information. The last time I posted on this site regarding Statin drugs, I got about six responses last time.

Teriqueen

kaygoslinga

Hi Ann,
My husband's symptoms began after being on Lipitor for a few years. When his muscle strength got worse and worse, he stopped taking the Lipitor, assuming it was the cause.

After dealing the the ALS diagnosis, and coming to the point where we decided we had to get on with our lives, he saw his regular physician for a 'regular' check up - his cholestrol level was sky high again. I don't want him to die of a heart attack before the als takes him! So, he is back on the lipitor. It's such a 'catch 22' - we're damned if we do, and damned if we don't.
- Kay

WFuller

I was on Zocor about two years before developing symptoms. I went off Zocor after the diagnosis, but the my progression continued, and my cholesteral shot way up, so I went back on Zocor...

Wayne

eml256

I am very much aware that parkinson's and ALS are 2 different diseases, though they both fit under the umbrella of "neurodegenerative diseases". with that in mind, thought the following might be of interest:
'Link' Between Statins and Parkinson's Probed

Posted on: Monday, 15 January 2007, 12:00 CST
http://www.redorbit.com/news/health/...ource=r_health

EXPERTS sought to reassure patients after scientists announced they were planning an in-depth study on the link between statins and Parkinson's disease. The cholesterol-lowering drugs are taken by an estimated three million Britons and are renowned for preventing heart attacks and strokes. But now scientists are planning a detailed study after research showed a link to Parkinson's disease, which affects about 120,000 people in the UK. Charities urged people to continue taking their statins, saying the drugs saved lives. According to a report in the magazine Chemistry & Industry, researchers in the United States are planning a largescale clinical trial on the link. It comes after experts, led by Xuemei Huang from the University of North Carolina, said they had found the strongest link yet between low-density lipoprotein (LDL) cholesterol levels and Parkinson's. High levels of LDL cholesterol are linked to heart disease. Statins are known to reduce these LDL levels. The study of 124 patients revealed that those with low levels of LDL cholesterol were about three times as likely to develop Parkinson's disease as those with higher levels. Study leader Dr Xuemei Huang told the magazine she was worried by the results. "Yes I am very concerned, which is why I am planning a 16,000-patient prospective study to examine the possible role of statins, " she said.She said there could be big surges in the number of Parkinson's cases in the next five years if a link is confirmed.British experts sought to calm fears, saying there was little or no evidence of a link.Dr David Dexter, senior lecturer in neuropharmacology at Imperial College, London, said: "With the evidence we have at the moment, I would say there is not much cause for concern that statin use may cause Parkinson's disease. "The study by Huang and colleagues indicating an association between lower LDL levels and Parkinson's disease goes against current scientific beliefs."

pjf

My husband began to take statins for cholesterol and changed medications 4 times in about a 5 month period due to various side effects (asthma, intestinal). During this time he lost 30+ pounds and began to experience muscle wasting. He had a difficult time holding up his head & loss of strength. After many tests, we went to the Mayo Clinic and received a diagnosis of ALS.. We've talked about the correlation with each Dr and all are non commital. I am most interested in following up and would welcome any research, studies, etc. .

pjf

Ann, I submitted a response in another spot. This is my first time on line so am not sure of what I'm doing. Anyhow, my husband definitely started to have symptoms after taking statins - lost 30#, loss of strength and muscle wasting. Received dx of ALS July, 2006.

Oldchuck

All right I give up, what is PON??

Ole Chuckles

kaygoslinga

I'm with you, Chuck! What in the world is PON???

Ann8

I woud like to know too, but was afraid I would be showing my ignorance if I asked. Ann

eml256

I am so sorry for leaving a partial explanation of what PON is--I had never heard of PON either until I began researching statins and Parkinson's...

http://www.northwestern.edu/newscenter/stories/2006/07/paraoxanase.htm l
The genes for human paraoxanases (PON 1, PON 2 and PON 3), which are located on chromosome 7q21.3, code for the production of detoxifying enzymes involved in the metabolism of a variety of drugs, organophosphate insecticides, such as parathion, diazinon and chlorpyrifos, and nerve gas agents such as sarin.

Previous research described a possible twofold increased risk for developing ALS in veterans of the Gulf War, indicating a war-related environmental exposure to organophosphates and sarin in genetically susceptible individuals as a possible cause.

PON gene cluster variants have previously been associated with other neurodegenerative and vascular disorders, including Alzheimer's disease, Parkinson's disease, coronary artery disease and stroke.

Although the Northwestern DNA study samples were not analyzed for inclusion of Gulf War veterans, Siddique and co-researchers found significant evidence that gene variations (polymorphisms) on the chromosome region encompassing PON2-PON3 were strongly associated with sporadic ALS.

“Thus, single nucleotide polymorphism genotyping in the intergenic regions of the PON gene cluster, and replication, gene expression, gene-gene interaction and PON serum/enzymatic studies may help elucidate the complexity of PON cluster association with ALS,” Siddique said.

Siddique hopes to study DNA samples from Gulf War veterans with increased incidence of sporadic ALS and has applied for their DNA from the Veterans Administration collection.

Collaborating with Siddique on this research were Mohammad Saeed, M.D.; Nailah Siddique; Wu-Yen Hung; Elena Usacheva; Erdong Liu, M.D.; Robert L. Sufit, M.D.; Scott L. Heller, M.D., Northwestern University Feinberg School of Medicine; Jonathan L. Haines, Vanderbilt University Medical Center; and Margaret Pericak-Vance, Duke University Medical Center.

This study was supported by grants from the National Institute of Neurological Disorders and Stroke; Les Turner ALS Foundation; V. E. Schaff ALS Research Trust; Wenske Foundation; Harold Post Professorship; Les Turner ALS Foundation/Herbert C. Wenske Foundation Professorship; Falk Foundation Fund; and The David C. Asselin M.D., Memorial Fund.

a bit more info on PON gene clusters:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&l ist_uids=16319130&dopt=Abstract

Polymorphisms in the PON gene cluster are associated with Alzheimer disease.Erlich PM, Lunetta KL, Cupples LA, Huyck M, Green RC, Baldwin CT, Farrer LA; MIRAGE Study Group.
Department of Medicine (Genetics Program), Boston University School of Medicine, Boston, MA 02118, USA.

Paraoxonase is an arylesterase enzyme that is expressed in the liver and found in the circulation in association with apoA1 and the high-density lipoprotein, and prevents the accumulation of oxidized lipids in low-density lipoproteins in vitro. Common polymorphisms in genes encoding paraoxonase are established risk factors in a variety of vascular disorders including coronary artery disease and carotid artery stenosis, but their association with Alzheimer disease (AD) is controversial.

CherylW

My husband, Harry, was on several cholesterol drugs. Every time, he tried one after a short time on it, he would complain of what he thought was his tongue swelling and than he would have problems speaking and being understood. He would stop the drug and it would seem to clear up a little and he would try another one. After the last drug, his heart doctor decided no more. However, the last time we saw no improvement in his speech. About 7 months later, he was diagnosed with ALS. I am definitely going to look into this further.

teriqueen

So it looks to me like more and more of you have had experience with the Statin Drugs.

Here is the website to go to for the Statin Drug Study:

statinstudy@ucsd.edu

Please go there because if we get enough of you to participate we might be able to make a difference.
I would love to see this poison banned forever. There are natural ways to lower your cholesterol but doctors don't want you to know about it because then they don't get a perk for perscribing it to you.

Teriqueen

Oldchuck

Wow, now I think I know what PON is or are or may be. Unless and until there is more comprehensive and detailed histories of working and living environments associated with PALS it seems to me that little in the way of valid epedemiology can be done and I don't see any of the current data bases collecting this type data or information. I have filled out more questionaires than I care to mention as I trundled from neurologist to neurologist seeking a diagnosis and I have been associated with two ALS specialty clinics and am participating in two trials. In no case has this type of information been gathered. I have the feeling that the realities of PALS full history are not being studied and, perhaps this is the reason that we continue to research so many different avenues with little real results that impact on those of us who are dying. Realistically, I want to see the incremental therapies developed to address the HIV/AIDS crisis that led to combined therapies that are allowing AIDS to be treated as a chronic illness rather than a terminal illness. I see none of this in the ALS arena. I see a lot of mention of a cure but darned little about finding a rapid confirmatory diagnostic test or interim life extending therapies. Tell me I am wrong, but in the past two years when I have spent many hours educating myself on this disease I have, I find little to give me hope that these new interim therapies are anywhere close to helping us. I find this disturbing and perhaps symptomatic of a system that has lost what I call patient centricity. Process rather than patient seems to be the focus.

Sometimes we let research become the end all rather than the means to finding a solution. Raising funds for research and competing for these funds can become the name of the game rather than seeking incremental therapies to add to the meager relief now offered by riluzole.

Anyway, thanks for telling us what PON is. Now go back and find me something to extend the quality and duration of my life.

If I sound a little testy, I mean to. I watched a compelling movie on TV yesterday about the struggles of Jennifer Estess. I am struck by the same level of systemic ignorance by the general and specialty medical profession on ALS, its diagnosis and subsequent care. I am similarly struck by the fact that little real progress has reached us since the film was made or Jennifer's life dwindled away. I find that frustrating when viewed against the huge amounts of funds raised and directed to research, and the bureaucracies of the myriad of organizations and foundations and institutions that gave grown up, sucking up a good deal the funds that might be use more fruitfully to address patient and family care. I see major advances in the scope and availability of durable medical equipment to provide improved quality of life, but when I look at the prices that this market has generated and is being sucked from the Medicare, Medicaid and insurance resources it seems that a similar model needs to be developed for identifying and implementing therapeutic advances and solutions.

Amen.

Ole Chuckles

CherylW

Terrqueen,

Definitely will check out site. I want to get as much information and give as much information as I can regarding my husband's situation. Never knew of the link with statin drugs until I got involved on this site. It's a great place for informative information.

Thank you for sending me the info.

Eddiespaza

Dear Ann,

I'm so glad that you brought this up. Now that I have had to go on a disability retirement from my job, I have had a lot of time to review/ponder/wonder what it is that I did in my life that could have possibly triggered my diagnosis of ALS. About two years before my diagnosis by Dr. prescribed a Statin drug called Tricor after getting my DX. I went backwards and reviewed any and all lifestyle changes that preceded my diagnosis. I got on a web site that was called Worst Drugs.com -- and found Tricor amongst the worst. I have always wondered if any of the drugs that I was taking. Previous to my diagnosis were the trigger for my ALS. Two years previous to my ALS diagnosis. I was taking, Tricor and Viagra -- the only other thing that might have affected my health. Is that I was working at very high stress job -- and I have often wondered if the high stress could have been the trigger.

Eddie spaghetti

Thomas2

Ann,

My husband started having symptoms after he started "Lipitor". I still believe this was what triggered ALS, in his case. He only took it for 2-3 months, but everything started happening right after. CALS Janet

Bernadette2

I don't mean to be dismissive regarding the concerns expressed here about statin drugs. Researchers very well may find out that these drugs are a trigger for neurological disease. But I would like to stick up for the traditional medical profession for just a minute here. I honestly believe that most physicians are decent people who want to see their patients get better. It makes sense to me that they prescribe these cholesterol-lowering drugs for their patients. What would anybody do in their shoes? A patient goes to see his doctor, his cholesterol is off the chart, a drug is available that lowers cholesterol. Said patient has heard about the drug from his brother, people at work, and Aunt Mary, all of whom are telling him that he too should be taking this "wonder drug" to lower his cholesterol. What should the physician do--tell the patient he doesn't need the drug, or that maybe the drug will cause him problems in the future, or that maybe he should try garlic instead?

Also, like anybody else, physicians want to continue working in their jobs of choice.One of the reasons doctors prescribe drugs that lower cholesterol for patients with high cholesterol is because of our litigious society--because of our knee-jerk reaction to take somebody to court, to blame anybody or everybody for the bad things that happen in life. If Harold goes to his doctor with sky-high cholesterol and his physician doesn't prescribe the drug and Harold dies of a heart attack, what's the most likely thing that's going to happen? Harold's family is going to scream bloody murder in court: "Why didn't you prescribe Vitorin for our dear old Harold?"

Personally, I thank my lucky stars that I went to nursing school instead of medical school 30-odd years ago, since I was able to walk away from the nursing profession after 20 years a lot easier than I could have walked away from being a physician. I know from experience that sometimes working in the medical field can be a thankless job, so therefore I thank God that there are good people who continue, even in these suit-happy times, to work in the medical profession. Are doctors perfect? Of course not. Is the system perfect? Heck no. But consider just for a minute a world without them.

My rant for the day.

Bernadette

teriqueen

Don't get me wrong, I agree that Doctors are very important to our well being and what would we do without them. I just don't think that all the drugs that are advertised are all that good for you. Just look at all the warning signs they give you. The side effects that make it seem that it's better to deal with the orginal problem. Who wants all those possible side effects? I know that Doctors are just doing their jobs but they need to be sure that the patient understands the possible side effects. Most doctors aren't even aware themselves because what doctor has time to study every drugs side effects. Maybe we as patients need to ask our doctors more questions about the drugs they are giving us? Who's responsibility is it.? How do we know that Statin drugs aren't the cause of some diseases?

For me, I would just like to know more about these drugs and how many others could be affected by them. I know we can't blame anyone or anything for our loved ones getting ALS but wouldn't it be better to know that if a certain drug could be the cause that we make sure that it doesn't harm anyone else?

Sorry, I'll get off my soap box now. I just don't think that Statin drugs are the only answer to lower cholesterol.

Teriqueen

TracyBengtson

My dad started having ALS symptoms also right after taking Zocor. He wasn't on it very long. At first he thought his symptoms were a reaction or side effect, as noted in the fact sheet with the medication. He didn't even really need it because he always had low cholesterol.
Tracy, daughter of PALS

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