10 YEAR STATIN USERS SYMPTOMS

[woodyacres79]

I’m a 47 year old white male. 5’-8” 180 lbs.
Zocor 40mg / Lipitor / Niacin 1,000mg
I was a 10-yr user
Past symptoms but didn’t realize it at the time (I contributed all this to getting older);
Would have bloating feeling after meals.
Had difficulty falling asleep. Was subscribed Lorazapan
Slight joint pain in shoulders, knees and big toe. Was given something for Gout
Extreme pain in left elbow (I’m right handed). Was told I had tennis elbow and was given cortisone shot
Slight muscle pain / calf and back.
Pour concentration.
Fatigue easily.
Sexual difficulties ED. Was given Viagra
Short term memory problems.
Would get cramps and tingling in hands when using a lot. Had carpal tunnel surgery
Yearly increased snoring problems.
Did sleep study / put on a CPAP machine.
Rash on chest and upper back. Was given a cream for psoriasis
You could feel small hard bumps under my skin on upper back.
At times when setting down I would fall asleep and when wakened I
felt like I had died and was revived.
Was irritable.
Gums would bleed when brushing.
I would frequently get numbness and tightness in back of head, only the right side.

Symptoms two years ago;
Started noticing small muscle twitches in upper arms. This twitching start after I was into a two month grapefruit diet, I was drinking 64 ounces of juice per day. I know it was stupid, I didn’t know you were supposed to stay away from grapefruit.
Went to family doctor, he told me to stop statins ASAP.
Went to neurologist the following week, had MRI’S, blood work and EMG.
Within the next three weeks I had the following;
Twitching increased
Stiff neck
Would get chills so badly I couldn’t walk, teeth chattered violently.
Would have night sweats. They were so bad we could wring the sweat out of the sheets.
Bowel movements changed.
Urine was dark yellow, almost brown.
All oils diminished from my head skin, forehead is extremely scaly.
Lost 20 pounds in 3 weeks.
Had a violent humming or like a vibrating sensation that affected my entire body 24/7.
More tests ran within the next two months.
After this 3-week period the twitching magnified.
The chills and night sweats subsided.
Muscle cramps set in; the cramps in my forearms would curl my hands up.
The humming sensation was still present.
Gums stopped bleeding.
Rash and bumps went away.
These cramps and humming lasted for 6 more months.
I then noticed muscle weakness and muscle wasting.
It has now been two years and I’ve lost 80% use of my hands, I can’t walk safely without a walker, can’t
lift my arms up without severe pain in my shoulders, have trouble speaking clearly and there is noticeable muscle mass gone in my hands and shoulders.
Today noticing some muscle mass is coming back, oils coming back in head skin and still having difficulties with speech and walking.
I was diagnosed with having ALS.
Is it ALS or toxic reactions from the statins?

[Darrell]

The grapefruit with statins was a big mistake and sounds like maybe it advanced to rhabdomyolysis given the urine color. Lucky it didn't kill you. Sounds like it came close to killing you. Read about using Q10 and L-Carnitine for statin damage by searching this site.

ALS? Has anyone ever suggested fibromyalgia instead? Read the symptoms:
http://www.fmaware.org/fminfo/brochure.htm

It's not necessarily statin damage OR ALS/fibromyalgia/whatever. It's possibly statin damage AND ALS/fibromyalgia/whatever.

[woodyacres79]

I'm having a nerve and muscle biopsy next week. Do you know what that might show?

[Darrell]

That will test the ALS diagnosis. It can also examine the statin-related muscle damage. That's a really good next step.

[sos_group_owner]

Hi "woodyacres"

Please read this very informative article by Dr Paul Phillips of Scripps Mercy Hospital in San Diego, CA.
[url]http://www.impostertrial.com/physician.htm[/url]

These are the topic headers:
* Statin Associated Rhabdomyolysis
* What is Known about Statin Associated Myopathy with Normal CK?
* How to Evaluate Patients with Muscle Symptoms on Statins?
* How to Treat Patients with Hypercholesterolemia Who Can't Take Statin Therapy
* Percutaneous Muscle Biopsy
* Post-Rhabdomyolysis Syndromes
* Further Reading

The page for "Physicians" is more informative than the one for "Patients".

Fran

[Joanne Mueller]

Dear Woody Acres: Your mention of ALS (Lou Gehrig's) prompts me to write in spite of being very tired.

Months ago I posted an item re need to move electrical items away from close proximity to beds. I have researched EMF/EMR (electromagnetic fields/electromagnetic radiation) for over 15 years.

Since I note that you use a C-pap machine, it may be very important for you to read Dr. Russel Reiter's book, "Melatonin." Melatonin is 500 times more radioprotective than DMSO which is a recognized radioprotectant (a statement from the book but I don't have page number right now...)

My husband (diagnosed with Alzheimers but yet no pathology to explain his "profound and unusual memory loss -- "no blockages and/or pathology" confirmed by PET Scan and prior MRI and CT scans plus all the blood work, etc.) and I both take Melatonin every night before going to bed.

We have lots more energy than most persons in their 70's -- Bud being 73 and I just turned 70. Bud stopped having delusions and waking up agitated, etc.

Bud is another victim of Lipitor (previously Mevacor) -- 10 mgs. for many years. I took him off after finding Dr. Graveline's site on the net. As expected, his Internists "deny" but the Neurologist admitted "possible..."

We moved Bud's electric clock radio and his next neuropsych test indicated improvement in Executive function portion of test. This was prior to my taking Bud off Lipitor.

Since stopping the Lipitor, Bud's liver test is closer to normal, he can now go for walks again (leg pains before), he has gone off medication (Allopurinol) for gout that was most likely caused by taking statins, his cataracts did not require the surgery that was said to be necessary some two years ago but he still does get lots of cramps in his legs if he does strenuous work. It is hard to tell but it appears he will never return to normal re his short term memory. Some days better...some days he repeats things several times within a few minutes.

Agitation, hallucinations, confusion all have improved but may be linked more to taking Melatonin and gettting decent sleep (in spite of two high voltage powerlines only 50 ft. from front of our house) than to stopping statin (Lipitor) but then again, who knows? Particularly since even he remembers how much pain he had and that he couldn't go for hikes while on statins.

The 2002 EMF California Report links magnetic field levels as low as 4.0 milligauss to brain cancer, Lou Gehrig's Disease (ALS), Leukemia and miscarriage.

I began researching EMF's primarily because we have two grandsons who were diagnosed with rare immune deficiencies said to lead to Leukemia. I discovered they were sleeping up against walls opposite electric meters. They both (cousins in separate homes) "got well" after moving their beds.

I conducted guinea pig studies here at our house -- cage against "powerwall" and they developed severe blood changes consistent with pre-Leukemia and/or collapse of immune function. Survivors recovered after moving them to basement.

The 1999 EMF RAPID Interagency Committee Report has never been presented to Congress!!! Low level EMF's have been classified as Class 2B carcinogens.......

You can imagine from what I write about EMF exposures, particularly at night when one's body is trying to restore itself (circadian rhythm), that sleeping close to electrical items (toxic exposure) PLUS taking a medication such as one of the statins, is likely to produce "dire effects."

I have major concerns for persons trying to recover from the devastating effects of taking toxic statins if they are also chronically exposed to EMF/EMR from items such as those little black power supply boxes for cordless phones, any electric clock, fans, monitors, certain lamps, improper wiring close to especially head of bed, etc., etc.

Both Bud and I take LOTS of other vitamins and supplements including Co-Q enzyme 10 although Bud has problems if I give him B vitamins in doses higher than what is in a Senior Vitamin plus one B-complex. Much worse on B-12 shots. Could be only persons like us in homes by powerlines and/or those sleeping close to electrical items but also could be some problem from taking statins I am not aware of -- we are both unusually sensitive to all medications tho....... I was never able to tolerate statins. I tell my doctors "I consider not being able to take statins a gift from God!!!"

Sorry this is so long......anyone wanting more info, please feel free to send me an email. I work every day trying to save children from Leukemia and also check the Alzheimers Assoc. forum so best to email rather than expect I will get back to this post real soon. Take care everyone!!! Joanne C. Mueller, Guinea Pigs R Us, 731 - 123rd Ave. N.W., Minneapolis, MN 55448-2127 USA....phone 763-755-6114...Email jcmpelican@aol.com (8-18-06)

[carbuff]

Woody,

I almost fell out of my chair reading your post. Your symptoms are practically identical to my mother's.

My mom has been on cholesterol medication for almost 15 years. She is only 48 years old. The medicine she has been on ranged from all different types of statin drugs. The last being Zocor and then a switch to Vytorin. She has always suffered from stomach problems for many many years and then the last couple years she has noticed muscle weakness and wastage in her hands and cramping. After vigorously exercising regularly (by this I mean running 4 days a week, Curves for women, lifting weights...very active like you), the problems seemed to get worse. There is not much muscle left in her hands and she finds that her arms are very weak. Her muscles are easily tired and after a recent EMG she has noticed twitching throughout her body. Sounds like your experienced extreme muscle twitching as well after your EMG. It is hard for her to grip things and she is losing a lot of her motor skills. As far as walking, she is ok. No noticeable problems walking, but not nearly as energetic as she used to be. She even experienced a rash on her chest and back. She also has neck pains and stiffness so bad she can barely turn her head at times. She also gets cold very easily. If her hands are cold she has a lot of problems with her motor skills.

Basically all the doctors are leaning towards ALS. I just have a hard time believing that this is the cause. And of course, I don't WANT to believe it. Could it be possible that these really are side effects from the Statin Drugs?? Suppossedly her EMG results were not great and the last doctor she saw seemed to think it was ALS. Is that normal to have something show up on the EMG?

She has been off the statin drugs for 9 months now. Her symptoms are not any worse...they have pretty much stayed the same. Recently she has gone on a program were she is taking a large dose of vitamins and specifically CoQ10. The amount of vitamins she is taking is unbelievable. Roughly 50+ supplements a day! She also had a strict diet to follow with no dairy, coffee, red meats, or artificial sweetener. Of course now she is not following the diet as strictly as she was. You should surely be taking 1200mg of Vitamin E as recommended by Dr. John Campbell (a doctor that has been studying the side effects of Statins and wrote a book) and by her Neurologist as well. Some other doctors I have been in contact with are Dr. Beatrice Golombe. She is an amazing lady who conducts her study in San Diego. She wanted my mom to go down there for a couple weeks. She supposedly has had some success stories. We are still unsure about making the trip. I would have a hard time getting off work, and its still something we don't know much about. She really seemed to know what she is talking about, but in talking with her I found myself very confused with all the medical terms. I wish I could've recorded the conversation somehow. I have also heard of another doctor in Boston, Dr. Kwiatkowski. A neurologist that is not so quick to eliminate that these symptoms are not directly related to Statin use.

I refuse to believe that my mom is suffering from ALS. I have been researching quite a bit and don't understand why the doctors seem to overlook this. She was the one that brought it up to the doctors and she was the one who decided to take herself off of her cholesterol medication. She also quit her medicine cold turkey, as I assume you did as well. According to Dr. Golombe this is why symptoms seemed to worsen. A stop in medicine you have been taking for so long is serious. She also had weight loss, not 20 lbs, but closer to 10. We also attributed this to stress.

I do understand that she was on these statin drugs for years and years with no real problems. Her symptoms were gradual, but now are disrupting her life emotionally and physically. I did notice that these symptoms seemed to occur after her switch to Vytorin and vigorous exercise.

How gradual were your symptoms? My mom got off the Statins in November. She feels her arms are still weak, and her hands are basically just bone. The neck pain is not as sever (either that or she is getting used to it) and she still doesn't seem to have trouble walking. The twitching is not as bad, but still there. What kind of tests have you had done?

I blame all of these problems on the Statin drugs. I've talked with so many people on this forum and its unbelievable how many seem to have the same symptoms. You are the first person to have almost identical symptoms as my mom. I think you two would have a lot to talk about. Her email address is deeshootz@hotmail.com. Her name is Debbie. Maybe you two would have some advice for eachother. If anything, might be nice to talk to someone who really understands where you're coming from. She could share her information she got from Dr. John Campbell, which may help you. Then she can give you her list of vitamins and I really think you may be able to help each other.

I can't even begin to say how sorry I am that this is affecting your life and that you are unfortunately one of what seems to be many suffering from the side effects from Statin drugs. And to think, they were supposed to be helping you. I don't believe that you, or my mother have ALS. I believe that it is all related to the toxins in the statins. Its all to ironic. You did say that you have noticed some of your muscle mass coming back. Was that in your arms, or hands? How long was it after you stopped statins that you found you were unable to walk without a walker? Have you been taking CoQ10 or any other supplements?

Hopefully we can keep in touch and maybe you can contact my mother. She is an amazing lady, but she is worried and its always in the back of her mind. Some days are better than others.

Good luck in your recovery, Woody. I will keep you and your family in my prayers.

Please keep in touch.

God Bless,

Jamie

Email: jamie@cliffanschuetz.com
Debbie (my mom): deeshootz@hotmail.com

[sos_group_owner]

Hi Jamie,

I wanted to comment about a few things you said about your Mom.

The primary reason stopping statins abruptly is not recommended:
Statins are a potent anti-inflammatory. The fact that statins also lower cholesterol is "irrelevant".

The recommended method to stop statins:
week 1: cut pills in half and take that 1/2 pill every day
week 2: take 1/2 a pill every other day
week 3: take 1/2 a pill every third day

At the same time, start taking Dr Graveline's "statin alternatives" - Statin Alternatives reduce and prevent inflammation, are anti-oxidants, reduce platelet stickiness, control (toxic) homocysteine and have the same anti-inflammatory affect as 20 mg's of Lipitor, without side effects.

Buffered Aspirin - 81 mg (contains beneficial magnesium)
CoQ10 - 100 to 150 mg (gelcaps - NOT powdered) with Vitamin E
(all 3 of the B Vitamins below control Homocysteine)
* Folic Acid - 400-800 mcg
* B6 - 80-100mg
* B12 - 200-250mcg
Omega 3 (Fish Oil or Cod Liver Oil) - There is no upper limit

Source: http://www.spacedoc.net/statin_alternatives.htm

Re: After vigorously exercising regularly the problems seemed to get worse.

Comment: Statins cause "exercise intolerance".

Re: I do understand that she was on these statin drugs for years and years with no real problems. Her symptoms were gradual, but now are disrupting her life emotionally and physically. I did notice that these symptoms seemed to occur after her switch to Vytorin and vigorous exercise.

Comment: When someone is switched to another statin, "stopped" and then restarted on the same or switched to another statin, or the dose is increased...

These are the situations when someone that seems to be tolerating a statin may start to encounter adverse effects (AE's). Dr's seem to think that AE's only occur when someone starts taking a drug, but with statins, this is not the case.

My husband was "somewhat" tolerating Zocor for a couple of years and then 5 years of Lipitor (starting with 10mg. His Cardiologist increased Lipitor from 10mg to 20mg (for no apparent reason). When I look back at the timeline, this is when hubby started to experience cognitive decline, including several bouts of TGA (transient global amnesia). Also muscle wasting, visual fatigue & disturbances (amaurosis fugax), dark pigmentation all around the neck area, stiffness/pain in the neck/shoulders were the primary complaints (that fell on deaf ears).

Primary car physician completely denied that statins could cause memory loss... scribbled "dementia" on his script pad with a referral to a Neurologist; also a script for an MRI of the brain. MRI was normal. Neurologist also completely denied that statins could cause memory loss... wanted hubby to resume statins and start taking Aricept. We said no to both. We asked if there were any additional tests to determine possibility of Alzheimer's. PET scan was also normal. Neurologist again said to restart Lipitor and start Aricept... still NO. Neurologist told us not to come back unless there was a change.

We fired the PCP and the Neurologist. We have a new PCP but he is going to be history too. His only concern is cholesterol. All of my husband's inflammatory markers are excellent: homocysteine, hs-CRP and Lp(a).

No statins for the past 2 years; he's still experiencing persistent short memory loss, but no TGA.

My husband has been going to the chiropractor since January to help restore flexibility. The only other Dr I will consider now is a Naturopathic Physician. All the others are "pill pushers".

Fran

[Darrell]

When I was a graduate student, I started student teaching and discovered that many of the undergraduates in my field had a pretty weak grip on the basics of the field. It took me 30 more years to discover that many doctors have a pretty weak grip on the basics of medicine. Many don't even know the basics from the patient prescribing information sheets for the meds they're prescribing. It's pathetic.

[CatMom]

Hi Woody, my problems with statins was not nearly as bad as yours so I know I was one of the lucky ones. I don't think my damage was permanent since just about all my problems have vanished. It took me a good month being off of it to realize just how much of my life this stuff had stolen, and it had stolen far more that I had thought!

Your list of medicines added for the symptoms was almost funny. I too, had added other medications to offset what I thought was "growing old". It really seems EVERYBODY is profiting from these statin drugs when you look at the ripple effect... all the other medications, all the new doctors you have to see, all the tests that are ordered. (I saw new doctors and had tests too)

The saddest part is peoples reaction to you when you try to tell them what it has done to your life.. I had one say "I am on it because they say it prevents dementia and that runs in my family".. She didn't want to hear that it causes dementia... Another said "I have been on it for 8 years and not had any problem, it is doing what it is suppose to be doing, my cholesterol is the best it has ever been!"... She didn't want to hear that I was on it almost 6 years and I thought I had no problems too! Another told me "You should have talked to your doctor or druggist before getting off of it!" ... well....DUH!

Good luck to you! Catmom

[woodyacres79]

Catmom, what were you taking, how much and for how long?

[CatMom]

I am unclear as to exactly what you are asking... About the statin I was on or the meds I was taking to counteract the side edffects of the statins?

As for the statins, I was on Lipitor, started out on 10 mg around 2000 or 2001, upped to 20 mg in 2003 and upped to 40mg in Nov. 2005.

On 10mg, I had the sudden onset of horriable knee joint pain with no prior history of knee pain or problems. That was around sept. 2001. My doctor gave me another wonder drug for that pain, that wonderful Celebrex! (remember that one?) After reading the insert on that I dumped them in the trash without taking any of them... I finally found Aleve got rid of the pain and took that until I got off the Lipitor 7 weeks ago.

2003 and 20 mg... I started having odd painful swelling in my feet. That costs a ER visit and several tests and was put on Rx fluid pills and told to wear support stockings. The fluid pills did nothing and the support stockings hurt the swelling so I trashed those. I saw 3 different doctors about that and none could tell me what that odd painful swelling was/is...Started with cramping in my feet too. Ha... and I just now realized all this time I been wondering what those under the skin hard bumps are around my elbo's!

About this time I started having all kinds of gastrological (sp?) problems, indigestion and acid reflux. Also sudden bouts of vertigo that came and went.... and I work on a BOAT so that is not good!!! Meds for indigestion, acid reflux and vertigo...

2005, 40mg.. That was September or October. By November I realized I was getting extreemly forgetful and terriably confused about simple tasks. Driving was a problem because I would sometimes not be able to find where I was going, pass up where I needed to turn and was scaring myself. I also started noticing tingling in my hands, stumbeling a lot (also NOT good when you work on a BOAT!), having problem remembering words and if I remembered them I couldn't say them correctly and all that was scaring the daylights out of me more than the other stuff. I was afraid to admit to anyone what was happening but I knew within a year, I would not be able to work or take care of myself at the rate it was going..

It was June of this year that I even thought it could be the Lipitor, I researched it on the web and the rest is history.

What I didn't tell you was what else I discovered when I got off of it. The stuff had stolen just about ALL my energy and I didn't have a clue about that until I got off the stuff and got my energy back. Now I have seen just how much of my life that stuff had stolen but it took getting off of it to find that out. BOY!! The excuses I made to get out of doing things because I knew I would not have the energy to go and do!

The only problem I have that didn't go away was the odd swelling in my feet, that is still there but I am hoping that in time that will go away too. If not, then I still feel I got off easy compared to what some have gone through.

I just wish for everyone else to get as much recovery as I did and who's to say there are still some long term effects that I haven't realized yet?

[bucho]

Woody,

I'm relatively new to this forum, and you're one of the first folks I've read to mention a vibrating sensation and chattering teeth. I had both of these reactions to Zocor, so intense they temporarily ruined my life (24-7 for several months). Also the slow digestion and bloating you mention.

For commiseration, read my recent post on the Zocor forum (August 20, 2006). I feared that I would vibrate and chatter for the rest of my life! I've been Zocor-free for 4 months now, and at last it looks like those problems may end. But they have been the slowest to reverse of all my symptoms.

Best of Luck,

"Bucho"

[woodyacres79]

[quote="bucho"]Woody,

I'm relatively new to this forum, and you're one of the first folks I've read to mention a vibrating sensation and chattering teeth. I had both of these reactions to Zocor, so intense they temporarily ruined my life (24-7 for several months). Also the slow digestion and bloating you mention.

For commiseration, read my recent post on the Zocor forum (August 20, 2006). I feared that I would vibrate and chatter for the rest of my life! I've been Zocor-free for 4 months now, and at last it looks like those problems may end. But they have been the slowest to reverse of all my symptoms.

Best of Luck,

How long were you on zocor, what doseage and when did these symptoms start.
Woody
"Bucho"[/quote]

[bucho]

I was on Zocor (20 mg per day) over 3 years before problems became apparent. When they did it was sudden and intense. It's a long story. I posted it on this same site, under the topic area "Zocor".

Recovery has been slow but steady. I'm now about 80% back to normal, but that much recovery has taken four months. There are occasional relapses but they are less intense as time passes.

[eml256]

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.


Siddique is Les Turner ALS Foundation/Herbert C. Wenske Professor,
Davee Department of Neurology and Clinical Neurosciences, professor of
cell and molecular biology and director of the Neuromuscular Disorders
Program at Northwestern University Feinberg School of Medicine.


ALS is a complex neurodegenerative disorder of the motor neurons that
results in muscle weakness, difficulty speaking, swallowing and
breathing and eventual total paralysis and death generally within five
years.


In 1993 Siddique and collaborators determined that mutations in a gene
known as SOD1 account for 20 percent of familial, or inherited, ALS (2
percent of all cases of ALS). However, the cause of sporadic ALS is
still unknown.


In earlier research Siddique and other researchers hypothesized that
sporadic ALS is modulated by variations in multiple genes interacting
with each other and environmental exposures.


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.


http://www.eurekalert.org/pub_releas...-vid070506.php