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From: fresh~horses on 15 Oct 2005 14:24
Those who have been injured by statins are invited to post the story of
their injury on http://www.spacedoc.net

Host and moderator Duane Graveline M.D.
Former NASA Science Astronaut
retired family physician

An example of Dr. Graveline's writings on statins and injury:



Neurodegenerative Diseases and Statins

I have received correspondence from many people taking statins who have
developed symptoms sufficiently similar to other well established
neurodegenerative diseases that their initial diagnosis was considered
to be Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS),
Parkinson's Disease (PD), Frontal LFormer NASA Scientist Astronaut
Duane "Doc" Gravelineobe Dementia (FLD), Alzheimer's Disease (AD) and
even somatic mitochondrial mutations.

The presumed mechanism of action of such cases have been statin induced
cholesterol inhibition, ubiquinone depletion or some combination of the
two.

In some of these cases the symptoms have regressed after stopping of
the statin drug lending credence to possible statin drug causation. In
other cases various supplements have been utilized in addition to
stopping the statin drug, with varying degrees of improvement in the
clinical picture depending on the nature of the supplements and dosages
used.

Since there are no therapeutic guidelines for such cases, treatment
plans have been largely intuitive. Other cases have gone on to
classical forms of various neurodegenerative diseases provoking the
question as to what role, if any, their previous statin might have
played in "triggering" their illness".
The following are some of these case reports: It might be of interest
to the reader that two of these reports were experienced by MD
specialists.

"Doc" Graveline




The following are a few of the reports I have received from
readers of my books and this website relevant to the subject of
Neurodegenerative Diseases and Statin Drug Use.

1) I have found out my creatinine kinase was 386 on March 31, 2005
and was taken off Lipitor. I asked for my old records and found that it
was at 237 in February of 2004 when I had been taking lipitor for 14
months (20mg per day). With all the research I have done, I feel this
was the cause, however, my doctor said he does not know what is wrong
with me. Multiple Sclerosis was ruled out but I have neuropathy from
elbows to hands, lost fine motor skills and walk unsteady. I have
weakness and loss of muscle in hands. I fell down the stairs last week.
I work a physical job, need my income and I am only 55 yrs old.

2) I am interested in telling you about my problems with statin
drugs. Two years ago after having been on simvastatin for years, I
developed a great deal of stiffness and weakness in my legs and arms
and had it diagnosed as Polymyalgia Rheumatica (PMR)as I had an
elevated ESR of 70. I was put on prednisolone and the stiffness etc.
was less but I still had the weakness. For approximately 12 months I
took the prednisolone and simvastatin. At first my ESR went to 20 and
then climbed over the months to 90 at which time I went to a three
different specialists.

There were several opinions, which seemed to suggest that I hadn't
had PMR at all and some thought was given to the problem being caused
by simvastatin. I stopped the prednisolene in July 2004 and then Lipex
in Nov. and my ESR have come down a great deal. Although most of my
weakness and stiffness has gone I am left with a degree of soreness and
weakness in the muscles in the top of my arms. At one time during this
period I also had incredibly sore heels, which I now have read about as
being another side effect. I hope that the problem with my arms will
resolve itself but I am now certain after all that I have read that I
have been another victim of simvastatin's side effects

3) I started my husband on Methyl B-12 (sublingual form) at 5,000
mcgs twice a day (morning and evening) and after a couple of days I am
starting to notice improvement. He is not as confused and actually can
complete a dual task without error or frustration and confusion. So
this is giving him additional benefit in cognitive function over and
above that obtained from just stopping the Lipitor. It is my
"uneducated opinion" that the proper dose of sublingual Methyl B-12 is
essential, particularly for someone with long-term, severe cognitive
and memory problems. I suppose there is still the possibility of
Alzheimer's disease but now I have reason to be optimistic that his
condition was drug induced.

4) I am 50 years old. In June 2002 I had a stent put in my heart
and was immediately prescribed 80mg Lipitor daily. Everything was fine
until December 2004 when I noticed partial vision loss in my right eye.
The lower half of my vision in that eye looked as if I had looked at a
bright light and looked away I can still partially see through it but
with difficulty. Within a couple of weeks I became very anxious and
depressed for no reason I could discern. I even had a full- fledged
panic attack, which culminated with the feeling I was going to die on
the spot. I went to my GP the next day and he was not able to find
anything wrong with me. I also went to an optic neurologist who did an
MRI and said he could find nothing wrong with the eye itself. Later he
did a Visual Evoke Response test revealing that there was some problem
with the nerve, but he didn't know what. The next test he wants to do
is a spinal tap, which is already scheduled.

After finding this information this past Friday I'm thinking I
might cancel that appointment. I have tried to contact my cardiologist
but his nurse said I should just come in for an appointment, but that
won't be until April 7th. I can't wait, I already am cutting my dose in
half and will stay at that level for two weeks, my plan is to then cut
it in half again for two more weeks, then go off altogether. Here is a
complete list of all the symptoms I have noticed in the past 3 months:
Partial loss of vision in right eye, headaches, depression, anxiety,
fatigue, tingling sensation in left arm and leg, pressure on the right
side of my head, left eye twitch, muscle aches, muscle weakness, muscle
cramping and slight chest pain.

By the way, my last cholesterol report as of Jan 2005 was LDL 64,
HDL 41, Total 117, Tri G 127. When I asked the nurse about reducing my
dosage after getting those results she said that the only reason my
readings were so good was the Lipitor and I should continue with my
current 80mg dose. She also said the Doctor said I was still in group B
- whatever that means. I feel like I have been trapped in a prison,
complete with a torture chamber. Until I found the many statin drug
articles and stories on line this past Friday things looked pretty
bleak, now I'm starting to see a light at the end of the tunnel - but
it can't come soon enough! My cardiologist so far has conveyed the
notion that if I'm not on Lipitor I'm doomed. The way I feel right now
I'd rather live shorter feeling good than a long time being miserable.

5) So we went in to see the Doctor this afternoon. As a concession
to my on-going effort to confirm the diagnosis of this ostensible
mitochondrial dysfunction of mine, my doctor has agreed to drop my
statin dose to 5 mg / day after my next catheterization for its value
at reducing arterial inflammation. Since I will be on Ticlid for
several months thereafter and will have to have my blood work tested
every two weeks anyway we can monitor the effect of the diminished
statin drug on my cholesterol levels and see if it reduces the effects
of my morning 'fugue'.

6) I truly appreciate your efforts to research the side effects of
statins and try to inform those prescribing it. My father began taking
Lipitor around May 2002. It was shortly after that time that I noticed
some changes in him. Sometimes he'd start a story then lose his place
and other things were happening that he'd forget.

This past summer (July 04) after being on Lipitor for almost 18
months, my Mom watched as he paused in writing a check to pay a bill.
This is something he has always done, manage / pay all household bills.
He couldn't remember how to write out the long hand form of the amount
of money. He also became very quiet. Normally, he's the life of the
party and wanting to chat with everyone. Instead he became quiet and
would sit by himself at parties or with my Mom. Usually he'd be the one
that would be the 'social butterfly' and leave my Mom. After my Mom
mentioned this to her chiropractor, she was given an article on some of
the side effects of Lipitor (it was an article from Newsweek). After
reading this article, my Mom insisted that my Dad's primary care stop
his Lipitor.

My father has undergone a CAT scan, and MRI which have proved to
all be normal. He also had some cognitive testing done which ruled out
Alzheimers. We met with a neurologist last week, who wanted to run more
tests. During the appt. the neurologist mentioned he thought it might
be Frontal Lobe Dementia. At that time, those were merely three words.
Now after researching online, I have discovered this horrible disease
(Pick's disease) and there is no cure and no treatment. Frontal Lobe
Dementia has the exact same outcome as Alzheimer's; the only difference
is there is less known about it. We asked the Neurologist if Lipitor
could be the reason behind this. Without hesitation, his reply was No.
If there is any information you could forward along to me that I could
take to the follow-up appointment with the Neurologist, it would be
greatly appreciated.

7) I have Familial Hypercholesterolemia and an horrendous "bad"
cholesterol level that has NEVER been reduced to a medically
satisfactory level. I started taking statins as soon as they were an
alternative to cholestyramine, which was disgusting to take. I have
experienced just about all of the side effects that I have, fairly
recently, discovered to be rampant among statin users. All of these
effects were dismissed by my doctors, none of whom took the connection
seriously.

I suffered the most trouble when, after my first cardiac
catheterization, my cardiologist increased my dose of Lipitor to 80mg
daily. I developed huge problems with my gastrointestinal tract: I
found it difficult to swallow, developed peptic ulcer disease and GERD,
gastritis, and an hiatus hernia. My suspicions about Lipitor were not
accepted by my doctors. Only when blood work came back with high CK
levels did they tell me to stop taking Lipitor.

Meanwhile, I was falling over with syncopes. One one occasion I
fell down the porch steps and badly wrenched my leg. On others I fell
down flights of stairs and hurt my back. I was given a Tilt-Table test
which was positive for vaso-vagal. All further symptoms of dizziness,
vertigo, nausea and fatigue were attributed to VV Syndrome. I had
skull-spliiting migraines, got hospitalized from life-threatening
dehydration and had difficulty with transient loss of vision in one
eye. I felt as if my feet were often standing in hot water, my fingers
tingled and so did my toes. The slightest real exercise caused
overwhelming muscle pain and overall fatigue.

When I moved house it took me four days to get out of bed because I
had no strength. My face sometimes felt numb in some areas, I
experienced a loss of power in my hands. My heart developed leaks and
regurgitation, sometimes it didn't beat as it should. By this time I
had told the cardiologist who did my second catheterization that I
thought statins were a huge contributory factor to my vascular
problems. He told me to take Lipitor again. I did not do so because I
thought it was a poison to my system. In the middle of 2003, having
taken myself off statins, I started finding myself lost momentarily in
familiar places. I forgot where I was going and why. I couldn't
remember my telephone number or anybody else's. I received letters
from people concerning letters and calls I made but did not remember
making. My son brought in a trampoline that I had ordered by computer
in the middle of one night. I don't have the strength to remove it
from the box ! In December 2003 I fell down the stairs at 2 am one
morning. I did not know why I was near the front door. Three hours
later my son heard me fall down stairs again - this time I was fully
dressed. It was 5 am but I thought it was afternoon. I told him I was
going shopping.

I was terrified that I was losing my mind. I went to see my doctor
and he sent me for an MRI. It showed changes in the white matter of the
left hemisphere of my brain. People noticed that I was slurring my
words and couldn't make my mouth form the words properly. I saw a
neurologist and he gave me Plavix. He said the arteries were going into
spasm. He advised that I take a statin again because I have
hypertension and many high risk factors. I was unsure. In March 2004 I
had such bad chest pain that I went to the ER in the middle of the
night. It was heartburn, two days later I had a 4 day episode of stroke
like symptoms and Total Global Amnesia. I can't remember a thing but
my family and friends were terrified that I couldn't stand or hold a
cup to drink or feed myself; my manner changed and I became aggressive
and insulting; I went in and out of total confusion. I demanded my car
keys and fell down the stairs trying to get away.

The doctor thought I'd experienced some sort of seizure or
stroke. I totally lost 4 days. I saw more neurologists, they all said
my symptoms were "bizarre." Nobody would consider a connection to
statins, and to be truthful neither did I, because I had stopped taking
Lipitor. Everybody was thrown by the fact that I gradually recovered
though left with impairment of my short-term memory and language
ability. I decided I'd had TIA's. I was advised to see a surgeon.
Following my instincts, I found out about carotid surgery, and decided
I didn't want anyone chopping on my neck, and went, instead, to a
neuroscience center. Family and a friend came with me and they told the
neurologist what they had seen when I had episodes. I brought up
statins side effects; again I was assured these were not caused by
Lipitor. I had MRI and MRA scans and EEG and transcranial Doppler
testing. I was sent for a Neuropsychological test at the head injuries
center.

Testing quantified the impairment. Frightened, I decided that I
must have had a stroke. I taught myself to write with my left hand,
with difficulty, because I can't hold things and make fine motor
movements as well. My cholesterol level was above 400. My doctor told
me I had to take a statin. I refused Lipitor but was persuaded to take
Crestor at a 10mg daily level. I wasn't happy about that; but I was
scared of having a major episode again and possibly never coming out of
it. I was scared about going out on my own and of driving. I became
more and more isolated from other people as I felt "dumbed down." I
used to teach history and had an excellent memory. I am 52 years old
and, now, I couldn't remember what day it was or remember simple
details from a story. I stopped watching television shows because I
couldn't remember what had happened and was unable to follow the
plots. I was very, very, frightened. Now, on Crestor, I couldn't
sleep much and, when I did, I was woken by vivid dreams. My legs
twitched and I felt short of breath. My kids admitted that I "was a
shell of my former self." It was suggested that I apply for
disability status.

My gastroenterologist is currently doing testing on my GI tract. He
said I probably have Multiple Sclerosis. I am horrified, because this
was on top of uncontrolled FH and hypertension. I was even more anxious
and depressed. I got on the websites about statins and I discovered
Crestor was also regarded as "dangerous." What I then found out
made me really, really, angry. Why were all the doctors discounting
what all these people were saying about what had happened after they
took statins? I called Pfizer, of which I am a shareholder, and their
"product specialist" blew me off completely. They didn't even
offer a biochemist or a physician, she was a nurse. I printed up a lot
of stuff I found about statins and called the neurology center. My
doctor said he had never seen anyone damaged by statin side effects. I
said, " what about me?" When I tried to trace the course of my
major problems in the last decade and a half I discovered that they
fitted totally with statin side effects.

8) I am horrified by the recent proposal to give people with MS
statin therapy. They would almost certainly suffer adverse effects and
the drug company and medical people attribute the cause to the course
of the disease. I hate all the media advertising about statin drugs (
and Viagra etc.) These drugs are not candy and it is unconscionable to
create a demand among many with normal, now reclassified as high
cholesterol. I am going to sell all my stock in producers of stain
class drugs because I am certain that it is just a matter of time
before there is a recall and a total medical disaster.

Meanwhile, I thank God I found out about the TGA because I thought I
was demented. Please get information to everyone who is going to be
pressured into taking this poison that we still don't really
understand the full effects of. My cholesterol is three times normal
but I refuse to take a statin. I think it is possible that I have a
mitochondrial myopathy problem caused or at least triggered by statin
drug therapy. I am going to take ubiquinone and Omega 3 etc. Anything I
can contribute to your efforts I will. Thank you.

9) I think that statins come with their own side effects but the
drug can also trigger another illness in the patient. Getting worse may
not be a function of the statin but a function of the other illness
that was set off by the use of statins. We see that with Parkinsons and
I am in contact with a few cerebellar ataxia where it is also true.
These patients (and me) continue to get worse even after stopping the
drug. It looks like statins act as a trigger for another illness. I
just hope it is not fatal in the long run.

10) I have continued both my statins effects and Parkinson disease.
In my search I have found a depletion of glutathione is a hallmark in
Parkinson disease, and currently a study utilizing IV glutathione for
PD is being conducted at our state university school of medicine.
Glutathione is a thiol. My husband is calling Pfizer next week to speak
to a scientist to learn whether glutathione is one of the thiols
depleted by atorvastatin, thru what mechanism, and to what degree. I
will let you know what we uncover. We have equivocated about my husband
availing himself of this therapy since it is controversial and
experimental With the realization that glutathione may be one of the
thiols blocked by statins, the utilization of such therapy seems more
reasonable. I continue my writing campaign to anyone connected to
statins. I feel we just need one person who will listen and decide to
help. Thanking you again for your interest,

11) Because Lescol wasn't affecting my cholesterol enough the
doctor prescribed Lipitor and within months there was a drastic change.
I developed a balance problem and walk with difficulty. I have slurred
speech, a pain in my left knee when walking and a stiffness to my body
when taking Lipitor. I have seen a neurologist who said I probably had
cerebral insufficiency, an orthopedist who said I had arthritis,
another orthopedist who said I didn't have arthritis and an internist
who just doesn't know - all this after numerous x-rays and MRIs. For
some reason I suspected the Lipitor and decided to stop it even though
I knew the doctor objected. After two weeks the knee pain disappeared,
my body stiffness was gone and I'm not as tired as I was. Walking is
difficult still and my balance is not good. Also, my speech is still
slurred and I don't feel as alert as I should be. Two months have gone
by since I stopped the Lipitor and even though there has been some
progress, I'm not sure there hasn't been irreparable damage.

12) Today I finally received the following report from my doctor,
which confirms what he told me: that my speech and swallowing
difficulties were NOT caused by ALS, but probably were caused by
Lipitor! I have included everything that he said except that I have not
included his name. (Before I release his name, I want to check with him
about having his permission to use his name; I hope that he will say
"yes" and that he will be willing to talk about my case.) The
neurologist, along with my speech therapist...and of course, me....were
all ecstatic because of the encouraging EMG report. My neurologist
tells me that what has happened in my case is very rare indeed.

13) I am interested in whether hand tremors have been listed as a
side effect to Lipitor. My husband has been taking the drug for three
plus years and just recently developed a rather coarse hand tremor,
along with a stumbling walk. He has changed from rubber-soled shoes to
leather ones due to frequent "tripping" episodes. His affect has
changed from that of bright, attentive, humorous and insightful to one
of flat and humorless. I have noted his driving skills have
deteriorated, as well as other mechanical skills. He used to pride
himself on being able to manipulate and solve mechanical problems, but
now avoids anything mechanical.

He also was a detail-oriented individual, who loved nothing more
than following a set of complicated directions. Now he requests someone
else read and follow the directions. He has begun to require more sleep
than in the past and often takes a nap if time is available--something
I have never seen him do in our 33 yrs. of marriage. I have thought of
Parkinson's disease, but in discussing my concerns with my sister last
evening, she related that her husband has begun exhibiting all these
symptoms also, including the hand tremor! She too was concerned
re:Parkinson's. Her husband was tested by a neurologist for both
Parkinson's and Alzheimer's and both tests were negative. They live in
one state; we live in another. Her husband and mine are of similar age.
They share one drug in common--Lipitor! Could it be?

14) I was on Lipitor for three years; complained of hand and
stomach cramps to my doctor and stayed on the drug; finally went to see
a neurologist who promptly diagnosed me with ALS and gave me three to
nine months to live. My sense is that Lipitor affects the myelin
sheath.

15) While looking for information on Parkinson's disease, I came
upon your website. I have often wondered if TGA is somehow connected to
Parkinson's. I am not sure how old your article is on TGA. I have
studied the web for the past 5 years concerning TGA. My husband had an
attack in July of 2000. Your article on Lipitor was the first time that
I ever read of the relationship between the drug and TGA. My husband
used to be on Lipitor before he was put on Pravachol and I do believe
that he was taking Lipitor at the time of his attack. We will be going
to his doctor on the 31st of August and I am going to have them check
his records. He is now taking Zocor.

My husband and I were getting ready to go to the hospital to be
present at the birth of our son and daughter in laws first baby. He
went to take a shower and when he got out he asked me where we were
going. I thought he was kidding. He didn't even remember that she was
pregnant. I of course thought he had a stroke and called the
paramedics. He was transported to the same hospital where the baby was
born. They told us after many tests, that it was a classic case of TGA.
The doctor that he had at the time insisted that he had a TIA but his
Neurologist confirmed in a subsequent visit that it was a TGA. After
the TGA I noticed a difference in my husband. He was sent for a carotid
artery study and many other tests. He has been diagnosed with
Parkinson's disease for the past 2 years. I now wonder if this is true
Parkinson's or if it could be caused by the meds. It is very
frustrating to say the least. He has lost the use of his left hand and
has had to take an early retirement

16) Yesterday I went up to the teaching hospital in my area and
they said that I had MSA. A summary of MSA is: (Shy Drager syndrome)
Multiple System Atrophy is a neurological disorder caused by
degeneration of cells in certain areas of the brain. These control a
number of different body systems; hence the name. They include
functions of the autonomic nervous system (such as the control of blood
pressure, sweating, bladder function) and the motor systems (such as
muscle activation, movement and balance). MSA affects both men and
women. Symptoms usually start between 40 and 60 years of age. The cause
of MSA is not known, but is neither inherited nor contagious. I don't
know anything for sure but I think that statins may have played a role
in my developing this condition.

17) I have read articles about side effects from Lipitor. I have
taken other statins without major problems but after taking Lipitor for
three years, my problems are almost identical to yours. My balance is
bad, writing is difficult, speech is slurred and motor skills
diminished. I have seen neurologists, orthopedists, etc. and they came
up with diagnosis of basilar insufficiency. They don't know for sure,
however, just guessing. I can pinpoint when my walking, speech and
imbalance started and they coincide to within a few months after
starting Lipitor. I stopped Lipitor in Sept. 2004, and no longer have
the muscle aches and stiffness but the other symptoms remain. I'm a
72-year old woman and too many problems are attributed to age. I was
very active before but now activities outside the home are seriously
curtailed and I now use a walker and no longer have pain.


18) I am a polio survivor with diagnosed post polio syndrome,
although I work full time in spite of it and don't appear disabled. I
believe that because PPS is a neuromuscular disease that many drugs
affect me adversely and I believe there is literature to prove this. I
have a very high cholesterol level and at different physician's
insistence I have tried a variety of cholesterol lowering medications.
All have left me so fatigued I cannot function and I absolutely will
not accept that. Four years ago a new family physician emphasized that
I must take some sort of medication and so I agreed to take Lipitor.
After several months I quit.

I had severe fatigue and muscle aches. However because of PPS I can
have these symptoms when I am overworked so I soldiered on and
continued taking Lipitor as my doctor insisted. I finally gave up and
discontinued Lipitor. Within a week my fatigue greatly decreased and
after 3-4 weeks my muscle aches disappeared. I did not return to my
physician until several months later, at which time he threw up his
hands in despair, so I agreed to try again. Of course I thought maybe
my high stress job had caused the symptoms. But within 1 week of
restarting Lipitor the muscle aches and fatigue returned. So no more. I
absolutely refuse to take any sort of cholesterol lowering medication.
I will die from the side effects before anything else. Incidentally I
am also an RN.

From: Robert on 15 Oct 2005 16:00

"fresh~horses" <fresh~horses(a)despammed.com> wrote in message
news:1129400675.698998.31280(a)z14g2000cwz.googlegroups.com...
> Those who have been injured by statins are invited to post the story of
> their injury on http://www.spacedoc.net
>

Are doctors going to do any research on the people posting or is this only
for the people to express views?

Do you have one for HRT and osteoporosis therapy and new cancer
chemotherapy?

There's a lot of new drugs out there.
It might be easier to post them all including others in one thread.


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