Re: Underappreciated statin-induced myopathic weakness causes disability


"Rita" <nitany_98@xxxxxxxxx> wrote in message
news:16o8g1hce0ad41qp975f3j88pub3d68kms@xxxxxxxxxx
> On Wed, 17 Aug 2005 22:45:32 -0700, "Sharon Hope" <shope@xxxxxxxx> wrote:
>
>>
>>"Rita" <nitany_98@xxxxxxxxx> wrote in message
>>news:2aa5g11obo6q6v8ajso7vijs9e500usn84@xxxxxxxxxx
>>> On Tue, 16 Aug 2005 17:26:55 -0700, "Sharon Hope" <shope@xxxxxxxx>
>>> wrote:
>>>
>>>>
>>>>"Rita" <nitany_98@xxxxxxxxx> wrote in message
>>>>news:d7s4g11k0iq815qiqd5c55kckrsh910eo1@xxxxxxxxxx
>>>>> On Tue, 16 Aug 2005 13:17:41 -0700, jason@xxxxxxxxxx (Jason) wrote:
>>>>>
>>>>>>In article <y4udne-2crWqpp_eRVn-1Q@xxxxxxxxxxx>, "Sharon Hope"
>>>>>><shope@xxxxxxxx> wrote:
>>>>>>
>>>>>>> "Steve Marcus" <smarcus_spamout_@xxxxxxx> wrote in message
>>>>>>> news:Y9iMe.12096$Co1.5338@xxxxxxxxxxxxx
>>>>>>> >
>>>>>>> > "Sharon Hope" <shope@xxxxxxxx> wrote in message
>>>>>>> > news:CYednRN_aIK01pzeRVn-vA@xxxxxxxxxxxxxx
>>>>>>> >> Apologies should be directed to the statin disabled.
>>>>>>> >>
>>>>>>> >> Your second sentence in your initial conclusion was offensive to
>>>>>>> >> anyone
>>>>>>> >> who has had their loved one disabled needlessly.
>>>>>>> >
>>>>>>> > Virtually everything that *you* write on the topic of statins is
>>>>>>> > offensive
>>>>>>> > to people who understand anything about drug research and peer
>>>>>>> > reviewed
>>>>>>> > studies. More importantly, virtually everything that *you* write
>>>>>>> > is
>>>>>>> > both
>>>>>>> > offensive and dangerous to people who are being aided, or could
>>>>>>> > potentially be aided, by statin therapy.
>>>>>>> >
>>>>>>> > Your loved one was disabled needlessly due to an unusual adverse
>>>>>>> > reaction
>>>>>>> > to a prescription drug combined with what may well have been an
>>>>>>> > insensitivity to that reaction on the part of his physician(s).
>>>>>>> > Adverse
>>>>>>> > reactions to common beneficial drugs such as aspirin and
>>>>>>> > penicillin
>>>>>>> > have
>>>>>>> > killed people before, and will continue to do so. It's called
>>>>>>> > "bad
>>>>>>> > luck."
>>>>>>> > Your reaction to your loved one's bad luck is to mount a campaign
>>>>>>> > of
>>>>>>> > propaganda and disinformation against statin drugs akin to the
>>>>>>> > opposition
>>>>>>> > to fluoridation of water; the chief difference being that bad
>>>>>>> > teeth
>>>>>>> > have
>>>>>>> > the potential for killing far fewer people than coronary artery
>>>>>>> > disease.
>>>>>>> >
>>>>>>>
>>>>>>> This is simply not true.
>>>>>>>
>>>>>>> The adverse effects from the Lipitor began almost immediately, and
>>>>>>> were
>>>>>>> reported to his doctor immediately.
>>>>>>>
>>>>>>> The doctor, lacking full disclosure of statin adverse effects and
>>>>>>> their
>>>>>>> dangers ( this was prior to the Baycol voluntary recall), told his
>>>>>>> patient
>>>>>>> repeatedly to ignore the adverse effects and keep taking the statin
>>>>>>> or
>>>>>>> he
>>>>>>> would die from a heart attack.
>>>>>>>
>>>>>>> Pain? Keep taking Lipitor or you will die. Neuropathy? Tough it
>>>>>>> out,
>>>>>>> keep
>>>>>>> taking Lipitor or you will die. Memory loss? Haven't heard of it
>>>>>>> in
>>>>>>> relation to Lipitor, if it Alzheimer's there is no cure anyway, so
>>>>>>> FORGET
>>>>>>> IT, and keep taking Lipitor or you will die. CK over 10x normal at
>>>>>>> the
>>>>>>> threshold of rhabdomyolysis, ignore the pain and keep taking Lipitor
>>>>>>> or
>>>>>>> you
>>>>>>> will die. (no recognition that rhabdo can also make you die)
>>>>>>> Uh-oh,
>>>>>>> a
>>>>>>> specialist says the Lipitor may kill him? His memory now scores
>>>>>>> below
>>>>>>> the 1
>>>>>>> percentile, this in a Corporate CEO? We have nothing to discuss,
>>>>>>> just
>>>>>>> hide
>>>>>>> the Lipitor pills from him.
>>>>>>>
>>>>>>> Every month the degree of intensity and the number of adverse
>>>>>>> effects
>>>>>>> grew.
>>>>>>> Every single month for 48 months. At the end of that time he was
>>>>>>> fully
>>>>>>> disabled, physically and cognitively.
>>>>>>>
>>>>>>> Because of the lack of disclosure about adverse effects at that
>>>>>>> time,
>>>>>>> the
>>>>>>> damage continued to grow.
>>>>>>>
>>>>>>> This was not just bad luck, this was a direct result, not just of
>>>>>>> the
>>>>>>> drug's
>>>>>>> myotoxic, neurotoxic and brain-damaging propensities, but a direct
>>>>>>> result of
>>>>>>> a lack of available honest information on statin adverse effects.
>>>>>>>
>>>>>>> This persists, as many of the statin trials simply withold
>>>>>>> information
>>>>>>> on
>>>>>>> adverse effects, others document known and acknowledged PI-listed
>>>>>>> adverse
>>>>>>> effects in the "unrelated" category.
>>>>>>>
>>>>>>> My posts center on the awareness of adverse effects.
>>>>>>>
>>>>>>> The motivation is obvious.
>>>>>>>
>>>>>>> If they offend you, don't read them.
>>>>>>
>>>>>>Sharon,
>>>>>>Great post. Keep up the great work in regard to warning people about
>>>>>>the
>>>>>>adverse effects of statins. You may have saved me from developing the
>>>>>>same
>>>>>>types of problems that your husband is having. Only time will tell
>>>>>>whether
>>>>>>or not I develop more serious problems. Your posts and your FAQ helped
>>>>>>me
>>>>>>to determine that statins were the source of my muscle problems and
>>>>>>memory
>>>>>>problems.
>>>>>>Jason
>>>>>
>>>>> I see you have decided not to seek medical advice on your problems.
>>>>> I think you are taking a big chance to diagnose yourself based on
>>>>> what you read in a newsgroup. There could be other reasons and
>>>>> perhaps
>>>>> you could be helped. But you will never know if you don't bother to
>>>>> see doctors about the problems.
>>>>>
>>>>> It is interesting and informative to discuss medical problems with
>>>>> lay people, but only proper medical examination, tests, and so forth
>>>>> can give answers.
>>>>>
>>>>> I suspected statins might be at the root of my recent medical
>>>>> problems,
>>>>> but I did see doctors and learned otherwise. And now have some hope
>>>>> of
>>>>> remedying the situation and have experienced a fair amount of relief
>>>>> in a short period of time. How happy I am I didn't assume statins
>>>>> were
>>>>> the cause of my problem.
>>>>
>>>>Exactly correct - that is why my husband was in for specialist
>>>>consultations
>>>>and major testing over 52 times in just one 12 month period.
>>>>Specialists
>>>>were practicing and published department heads of major medical school
>>>>universities, with impeccable credentials.
>>>
>>> What is the message you are giving me, Sharon? That there are
>>> doctors who can correctly diagnose and treat my problem or that
>>> I could see 52 doctors over a year and still find out that only
>>> statins could be the cause of my problem? Methinks you speak with
>>> some confusion, here. And methinks you would be far happier if I
>>> found that statins were the cause of my problem rather than something
>>> entirely different. Perhaps I should dispense with doctors entirely
>>> since some people are not diagnosed correctly some of the time?
>>> So perhaps you can clarify what you are really saying above.
>>>>
>>>
>>
>>I was agreeing with you that you do not assume, you see a doctor.
>>
>>The constellation of adverse effects from the statins was extensive in my
>>husband's case. No one specialist covers all the damage, and no one
>>specialist is expert in testing all that needed testing. There were a
>>great
>>many other causes to rule out. Without a reliable baseline it would have
>>been impossible to measure improvement. It would also have put him at
>>risk
>>whenever he saw a new doctor, who might have been working without knowing
>>all the damage.
>>
>>I do, however, resent the implication that we kept going to doctors to get
>>a
>>predetermined diagnosis.>
>
> There was no such implication, Sharon, but you seem to have read one
> into my post. Of course I would go to as many doctors as necessary to
> find an answer to a medical problem. Especially if I had a condition
> like your husband's, in which he was in hideous pain and unable to
> stand. And had the neurologist I did go to not sensibly ordered an
> MRI which did disclose my problem, which is a very common one especially
> in people of my age, I would have continued to look for answers. It
> was not a diagnosis I anticipated because I admit I was spooked by the
> knowledge that statins can cause muscle pain and weakness. I told my
> doctor this and he said, in effect, let's see. Before assuming that we
> will do some tests because there are other possible causes. He did an
> examination and paid particular attention to how I described the pain
> and weakness. When I found out what I did have causing these symptoms
> I looked the condition up on the web and found the description of symptoms
> for spinal stenosis exactly described mine. That gave me some degree of
> confidence that the doctor had correctly diagnosed me. It is an annoying
> condition but not a life threatening one.
>
> Your husband's case is a worst case example, and situations occur in
> perhaps more people than we know of where the accurate diagnosis eludes
> even distinguished practitioners in the medical profession. And not
> just in the case of statin induced conditions.
>
> I was in my post referring to Jason, who seems to have a penchant for
> diagnosing himself without seeing any specialists. My suggestion to him
> in another post was to get on the stick and arrange to see them -- he
> had suggested administrative problems with his HMO was delaying this.
> When one is suffering and especially seeing deterioration as he suggests
> he is in both muscle strength and in memory, one would think he would
> move heaven and earth to try to get some authoritative answers. And
> depending on many things, I realize this is not always easy.
>

Thank you for straightening me out, I apologize for reading criticism into
your post. (You'd think I would have a thicker skin by now ;-)

I cannot speak for Jason, but in observing my husband, there was a period
where he would try to follow through on something, but could not. It was
almost like the movie groundhog day. He wanted to make handcrafted gifts
for the family for Christmas, as he usually did - starting many months
ahead, and would say in a surprised tone, wow, I'm really starting late, if
I don't get some materials today, I won't be able to finish by Christmas.
He would get the materials, and start on the project.

Then a few days later, he would say in a surprised tone, wow, I'm really
starting late, if I don't get some materials today, I won't be able to
finish by Christmas. He would get the materials, and start on the project.

repeat several times.

Finally, after a few months, he did manage to make some gifts.

Over a year after he stopped the Lipitor, he went into the garage and found
a set of uncompleted materials for the gifts he had made. Weeks later he
found another set. It turned out he found 5 or 6 sets of materials in
various states of completion. While on the Lipitor, he simply could not
form memories and had no idea he had not only purchased the materials, but
started on them over and over again.

Another example - we needed a new garden hose. He brought one home, then
became very upset and just went into the other room. Finally, he told
e --- he went out to attach it to the faucet, and there was a new hose
already attached. Then, he decided to put the new one in the garage as a
spare, and found 7 more new hoses there.

My point is, that statin cognitive damage makes it difficult or impossible
to follow through on a multi-step task. Like fighting a HMO to get a new
doctor to get an appointment to get diagnosis and treatment.

Mike would never have been able to set appointments and follow through in
that first year or two off the Lipitor, and his aphasia would have made it
almost impossible to communicate, and he would not have remembered the date
of the appointment, and days later, he would not have remembered even making
the appointment.

>
>>He was in a very precarious health position, in hideous pain, and unable
>>to
>>stand for even 4 minutes without collapsing on the floor. Each specialist
>>looked at his specialty and the internist worked as "quarterback" to
>>coordinate the team. Neurologist, mitochondrial specialist, DNA analyst,
>>brain surgeon, muscle biopsy specialist, nerve study expert neurologist,
>>neuropsych specialist, fronto-temporal dementia specialist, cardiologist,
>>interventional cardiology specialist, and, yes, statin expert, to name
>>only
>>a few. (And that 52 did not include the weekly cognitive rehabilitation
>>therapy sessions with a rehabilitation specialist). He had extremely
>>serious symptoms in all of these areas and more, and I feared for his
>>life.
>>It is not unheard of for a deadly cascade to start in a person that
>>debilitated in so many areas.
>>
>>There was no way he could go to the appointments alone, partly because of
>>the aphasia, and because he could not remember the previous evening, could
>>not follow sequence (nor relate it to the doctor), and could not
>>understand
>>a sentence beyond 7 words - due to such extreme short-term memory loss -
>>that he simply couldn't remember back to the start of the sentence after 7
>>words. Not being able to take a patient history makes it tough for a new
>>doctor to make a diagnosis.
>>
>>I was and remain our only source of income, we had 2 kids in college, and
>>I
>>had to take off work for each of these appointments and tests. I am paid
>>for the hours I work. Every single appointment cost us in lost income as
>>well as the cost of the appointment or test or procedure over and above
>>insurance.
>>
>>If you somehow think that even one of the appointments was superfluous,
>>you
>>are gravely wrong. We were fighting for his life.
>
> I have said I don't think that at all. It may be that some persons can
> see
> 52 specialists and still no answers, but of course not doing anything at
> all as Jason writes has been his mode guarantees that one will never know
> if an answer is to be found.
>>
>>Again, my post was to agree with you that you find out exactly what is
>>wrong - that is your only hope for a prognosis, and, if you are lucky, a
>>treatment that might halt the decline, and perhaps effect an improvement,
>>if
>>not a restoration to health.
>
> I am hopeful that I can find a way to minimize the symptoms and learn to
> live with the problem although there is no cure. Surgery works for many
> but my doctor says that does not mean the condition won't reoccur as
> continued degeneration will continue. I am not considering surgery, nor
> is my doctor recommending it. I have found a minimal resumption of
> exercise has alleviated the symptoms. And a sensible, progressive
> exercise
> program will benefit me in many ways and along with anti-inflammatory
> meds hopefully will allow me to function pretty normally. At any rate,
> I won't know until I try. The doctor has given me encouragement to
> experiment with my plan. And certainly exercise will restore some
> muscle strength to areas where they have deteriorated through a far too
> sedentary lifestyle over the past year. And benefit my cardiovascular
> system as well. Ihave to be careful in choosing exercise that will not
> exacerate the problems in my spine.
>
> Just yesterday I discovered a fitness facility so close to my home that
> I can walk there in 3 minutes -- well equipped and remarkably cheap. I
> plan to go there regularly for brief sessions on a recumbent exercise
> bike and some well targeted weight work and stretching. And since it
> is so easy to get there, I won't be tempted to overdo in any one workout.
>>
>>That his damage was due to Lipitor 10mg/day for 4 years has nothing to do
>>with your diagnosis.
>
> Exactly. And what's more, I have no intention of resuming Zocor or any
> other statin. I've learned that any possible benefit for a woman of my
> age is so slight as to be insignificant. And I don't like to take any
> powerful drug if not absolutely necessary. Younger people and those with
> diagnosed heart disease might well make a different decision.
>>
>


.

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