Andrea
From: Michelle (anonymous@obgyn.net)
Wed Oct 17 15:53:22 2007
Andrea,
I would bet that problems with Lupron are underreported for several
reasons. For one, most gynecologists look at patients in a vaccuum and
don't consider the patient as a whole. Also, they overrely on the PDR
and take it as the whole and complete truth. As for the patients, they
rely on their doctors and don't report the conditions.
As for incentives to doctors, I am continuously amazed that doctors are
so eager to foster conflicts of interest with pharmaceutical companies.
Oftentimes, they would more appropriately be referred to as
pharmaceutical salesmen, rather than doctors. I can't believe someone
with the professional degree and status of a doctor would want to lower
himself or herself to that level. And yet you often see a parade of
pharmaceutical reps streaming through their doors with VIP status. These
doctors are always pushing the latest drug. And drug companies run the
CME programs, pay for trips, and provide all kinds of lavish benefits.
If doctors do not want to be independent and want to be in business with
pharmaceutical companies, I think we have no choice but to enact
stricter legislation that protects patients from these conflicts of
interest and from doctors who prescribe medications due to financial or
other incentives, rather than patient needs.
As for pain, I understand! I take up to 1800 mg daily of Ibuprofen for
pain. I hope you can find a doctor who can help you soon. I recently
transferred my care to a major medical school and have finally found
good medical care. Perhaps you should consider doing the same. I think
it will difficult for us endometriosis patients, though, no matter where
we go, until researchers take on this disease and discover it's true
cause.
Take care,
Michelle
At Wed, 17 Oct 2007, andrea wrote:
>
>I would like to see all the research studies too, but I think the real
>results are all hidden. I know that document that Maggie found was
>probably buried, so that no one would ever find it, but luckily someone
>did! To know that there were falsified studies printed is very
>disturbing.
>
>Pulmonary embolism has been a side effect reported to the FDA for a long
>time now from Lupron.
>http://www.geocities.com/lupronfacts/sideeffects.html#Women
>
>I think either problems from this drug are very underreported, because
>people are simply too sick to mess with it, or the FDA is in the pocket
>of TAP. A billion dollar company can buy anything or anyone that they
>want. I would not put it past them. If the FDA knew about the rat &
>pituitary study, as reported in the testimony, why was that not included
>in the Lupron warning leaflet? Hardly anyone receives the leaflet, which
>is an FDA regulation of this drug. They have never followed up on that
>and doctors do not follow that rule, or no one would want to take it!
>
>All doctors say that women with all these terrible illnesses are in the
>minority, but I don't believe that. I think that is just what the
>doctors want us to believe. Lupron dominates the market when it comes
>to ghrh antagonist drugs, because TAP offers doctors the biggest
>incentives of all the drug companies. Notice that you don't hear nearly
>as much about Zoladex, made by Astra-Zeneca, it is the same kind of
>drug. EVERY doctor who I've seen, except for one over the last 20
>years, has pushed me to take LUPRON and nothing else. That is scary.
>
>My period pain is terrible too, I get a 102 fever, can hardly make it to
>the bathroom and will faint if I walk more than 20 feet. It hurt just
>to insert a tampon. That lasts about 3 days...but the pain women like
>you go through every day is unimaginable to me.
>
>Doctors would never give me pain meds until I found my general
>practitioner when I was 30. All of them wanted to give me a
>hysterectomy or Lupron, though. It just does not make sense. My GP is
>the ONLY doc who has helped me and I have spent thousands on pills and
>docs over the years. Why is it so impossible to get help for endo? The
>only doc who I would really trust to do surgery on me is Redwine in
>Oregon. He is totally against gnrh drugs, but I can't afford him.
>
>I thought I trusted the specialist I have been seeing to do my surgery,
>because he did not push Lupron on me and was super nice, but I think he
>gave me preferential treatment, because an ex-boyfriend of mine who he
>plays golf with sent me to him. I sent a friend of mine to him,
>thinking he would be good to her too, but he wants her to do 6 more
>months of Lupron and she just did 7 mos of it! That is beyond FDA
>regulations!! She has bad fibromyalgia. So now, I think he's a total
>creep too. Can't he see how sick she is? I guess his greed is more
>important than her health. I told her how sorry I was, that I did not
>think he would do that. So now, I am just going to stay on pain
>managment for a while til I figure something out. I feel like I'm at
>square one again. He is supposed to be a great surgeon, but how can I
>trust someone to operate on me, who is knowingly making thier patients
>sick?
>At Wed, 17 Oct 2007, Michelle wrote:
>>
>>Andrea, thanks. I do have a lot of health problems and I'm not sure why
>>they have developed. My problems began with severe endometriosis,
>>followed by autoimmune disease and Raynauds. The pain and inflammation
>>in my abdomen was so severe that if I was exercising at the time my
>>period began, I would faint. I have spent many a day in bed and missed
>>much school and work. The devastating impact of this disease has been
>>largely ignored by the medical establishment for decades, unfortunately.
>>
>>In the years after the surgeries and Lupron, I developed a pituitary
>>microadenoma, adrenal insufficiency and the pulmonary hypertension. I
>>don't know why I have developed these additional conditions. There is
>>no clear cause at this time. As for Lupron, the main thing I know for
>>sure is that it did not stop or even delay the progression of my
>>endometriosis. Three years after having nine months of shots I was back
>>in the operating room and extensive adhesions and damage to left ovary
>>and fallopian tube, which had to be removed. So I'm not at all sold on
>>its effectiveness as a treatment for endometriosis. Aside from being
>>completely ineffective, the next concern is the side effects. My
>>pituitary tumor has developed at a time when it would be very possible
>>that Lupron caused it to develop. I'm intrigued by the reference in the
>>testimony to monkey studies that showed pituitary microadenomas as a
>>result of exposure to Lupron. I'd like to see those studies. I wonder
>>how many other women with endometriosis who have taken Lupron have
>>developed pituitary tumors. This needs to be researched. Along these
>>lines, I believe that if anyone thinks that Lupron has harmed them in
>>this way or any other way, you should report your concerns to the FDA.
>>Here is the link:
>>
>>http://www.fda.gov/opacom/backgrounders/problem.html
>>
>>If several people have developed pitutiary microadenomas, for instance,
>>if we all report the problem, the FDA will see a trend and look into it.
>>
>>I also think that genetics could play a key role in making certain
>>people more susceptible to developing illnesses such as endometrisosis
>>and pituitary microadenomas. All of this needs to be researched. I
>>just wish more researchers were interested in this disease.
>>
>>Take care all,
>>
>>--
>>Michelle
>>
>>At Wed, 17 Oct 2007, andrea wrote:
>>>
>>>At Wed, 17 Oct 2007, andrea wrote:
>>>>
>>>>Michelle,
>>>>
>>>>I'm so sorry for all you are going through, I can't imagine how hard it
>>>>must be. When I first joined this site, I thought my problems were bad,
>>>>but to see so many women on here sick from Lupron makes my cramps seem
>>>>minor. I've had tons of doctors pressure me to take it, but I've always
>>>>refused. I really do want to fight for all of you with Lupron
>>>>illnesses, I just hope I can. Please e-mail me, so we can keep in touch
>>>>& I can keep you updated on things.
>>>>
>>>>Take care of yourself,
>>>>Andrea
>>>>
>>>>At Tue, 16 Oct 2007, Michelle wrote:
>>>>>
>>>>>Hmmm...very interesting. I developed my pituitary microadenoma in the
>>>>>years after taking Lupron in 1997. The idea that Lupron could lead to
>>>>>pituitary disease sounds very plausible to me because the drug so
>>>>>artificially and abnormally hyperstimulates the pituitary gland to
>>>>>produce FSH that I'm sure damage could easily occur to this tiny gland.
>>>>>Further, I have been told I have a "nonfunctional" pituitary adenoma
>>>>>which tumors typically arise from abnormal cells of the gonadotroph
>>>>>variety. The tumor has grown 4mm in size and is almost a macroadenoma
>>>>>now, growing at a rate of 1mm+ per year. I will probably have to have
>>>>>pituitary surgery some year soon. Also, I have adrenal insufficiency
>>>>>that I believe is due in part to this pituitary tumor, which has almost
>>>>>killed me three times now with adrenal crises. With a nonfunctional
>>>>>adenoma, you can end up with adrenal problems, thryoid problems,
>>>>>gynecologic problems, etc., such as mine because the abnormal tissue in
>>>>>the pituitary continues to grow over time, displacing the normal
>>>>>pituitary tissue and that is how you end up with a virtual
>>>>>hypophysectomy because the normal pituitary cells are destroyed and
>>>>>replaced by the abnormal ones and the pituitary therefore loses the
>>>>>ability to produce the pituitary stimulating hormones such as ACTH, FHS,
>>>>>TSH, GH, and so one, that stimulate the adrenals, thyroid, etc.
>>>>>
>>>>>I truly believe that the link between Lupron and pituitary problems
>>>>>should be studied further. Also, I think that researchers and doctors
>>>>>should be much more attentive to the side effects of long-term use of
>>>>>estrogen/progestin pills for endometriosis. I believe that I have
>>>>>suffered a lot of damage from these pills. For years, they caused
>>>>>numbness in my arms, sharp head pains, and other such symptoms. I have
>>>>>evidence of small infarcts, liver damage, and pulmonary hypertension
>>>>>now. I believe the pills played some role in much of this, based on my
>>>>>symptoms. Doctors should not dismiss offhand, as mine did, the
>>>>>complaints of a patient with regard to such symptoms as I now know they
>>>>>are quite serious. Focal nodular hyperplasia in the liver, sharp head
>>>>>pain and evidence of microvascular disease in the brain, Raynauds, heart
>>>>>strain, nonspecific ischemia, shortness of breath, and so on, should all
>>>>>be taken seriously and not dismissed. Instead, doctors are waiting for
>>>>>a major stroke or heart attack to occur before they take any complaints
>>>>>seriously. By then, it's too late.
>>>>>
>>>>>Stay vigilent everyone. And thanks for the post. Interesting.
>>>>>
>>>>>At Tue, 16 Oct 2007, andrea wrote:
>>>>>>
>>>>>>These quotes are from the PDF that Maggie found of testimony of a nurse,
>>>>>>Lynne Millican, to the Senate, who became ill from Lupron 10 years ago.
>>>>>>
>>>>>>I also spoke with Emily Page, the woman who started the Lupron petition,
>>>>>>and she also believes there is a cover-up going on when it comes to
>>>>>>Lupron. She sued TAP, but was given very little money, because her
>>>>>>doctor denied her problems were caused by the Lupron. She is still very
>>>>>>sick today.
>>>>>>
>>>>>>Please read these outtakes, and see what you think....falsifying 80% of
>>>>>>info in 4 Lupron studies? That sounds like a cover-up to me....
>>>>>>
>>>>>>pg 54: TAP has been declared a criminal enterprise based upon its scheme
>>>>>>with physicians and billing fraud and kickbacks and they just paid the
>>>>>>largest fine in history at the time, $875 million.
>>>>>>
>>>>>>pg 58: The internet posts of women identify the badgering, and coercion,
>>>>>>and manipulation, and threats used to convince women into taking Lupron
>>>>>>for a variety of indications—many refer to their doctor as trying to
>>>>>>‘‘shove it down [their] throat’’.
>>>>>>
>>>>>>pg 58: I would later learn that the director of this IVF clinic, Dr.
>>>>>>Andrew Friedman, had been a lead Lupron investigator, had received
>>>>>>numerous grants and funds from Lupron’s manufacturer, Takeda Abbott
>>>>>>Pharmaceuticals (TAP), and had published extensively on Lupron. Dr.
>>>>>>Friedman was ultimately found guilty of falsifying and fabricating
>>>>>>approximately 80 percent of the data in four Lupron studies, two of
>>>>>>which had been published and were subsequently retracted. Friedman had
>>>>>>‘‘altered and fabricated information in patient medical records,
>>>>>>falsified research notes by changing dates and changing and adding
>>>>>>text’’, and fabricated notes and fabricated patients for clinical visits
>>>>>>that had not taken place.
>>>>>>
>>>>>>pg 61: The profoundly significant and despicable thefts (‘‘conversion’’,
>>>>>>‘‘sharing’’) of women’s ova and embryos by Drs. Ricardo Asch, Sergio
>>>>>>Stone and Jose Balmaceda at the University of California at Irvine
>>>>>>(Regents; Press; 1995) should be a serious reminder to the utter (and
>>>>>>anesthetized) ease with which such menacing maneuvers can be executed.
>>>>>>(And Dr. Asch had co-authored studies of Lupron, ‘‘which was kindly
>>>>>>provided by Abbott’’ [Guerrero, 1993]). The contemptible violations of
>>>>>>stealing women’s eggs and embryos should highlight the profitability of
>>>>>>schemes to procure women’s eggs and embryos for use in research and/or
>>>>>>covert ‘re-sale’. Dr. Asch reportedly ‘left his office daily with
>>>>>>briefcase stuffed with thousands of dollars’. And attention should be
>>>>>>directed to the drug protocol(s) used—medications administered
>>>>>>‘‘deliberately’’ ‘‘so there would be a surplus of eggs’’ (Challender,
>>>>>>1995). Who is exerting any oversight over the field of reproductivity?
>>>>>>Who would exert oversight over therapeutic cloning—this same industry?
>>>>>>
>>>>>>pg 63: Women are told that Lupron will ‘‘shut down their system’’,
>>>>>>allowing ‘‘control’’ over their system, and that the side effects are
>>>>>>related to menopausal symptoms. But in fact, it was known prior to my
>>>>>>‘treatment’ with Lupron (but not disclosed to me) that Lupron causes a
>>>>>>‘‘hypophysectomy’’ (Holmes, 1988)—which, by definition, is ‘‘destruction
>>>>>>or removal of the pituitary’’; and it was known (but not disclosed to
>>>>>>me) that ‘‘sustained treatment with GnRH agonists most likely abolishes
>>>>>>pituitary function’’ (Bischof, 1988). I would also later learn that in
>>>>>>the original rat studies submitted to the FDA for Lupron’s initial
>>>>>>approval of palliative prostate cancer, all rats at all doses developed
>>>>>>pituitary adenomas (tumors)—and it was stated that ‘‘there is no obvious
>>>>>>reason to suggest that the same process could not occur
>>>>>>in humans’’ (NDA 19–010).
>>>>>>
>>>>>>pg 65: Published medical reports have noted the occurrence of abnormal
>>>>>>human pregnancy outcomes associated with the use of Lupron—43.5 percent
>>>>>>in one 1996 study (Karande, 1996). Another report, using the ‘long
>>>>>>Lupron protocol’, showed a 38 percent abortion rate (Shanis, 1995), and
>>>>>>a study of ‘low responders’ using Lupron showed a 66.6 percent
>>>>>>spontaneous first trimester abortion rate (Droesch, 1989). In ‘healthy
>>>>>>women undergoing ovarian stimulation’ using Lupron in another study, an-
>>>>>>other 66.6 percent abortion rate was noted (Minaretzis, 1995). Another
>>>>>>study’s title states ‘‘Exposure to [Lupron] in Early Pregnancy is
>>>>>>Associated With High Pregnancy Wastage That Could be Related to the
>>>>>>Length of Exposure’’ (Sasy, 1997).
>>>>>>
>>>>>>pg 69: The U.S. investigation of TAP’s billing practices revealed that
>>>>>>a computer program given by TAP to many doctors in the country (some
>>>>>>10,000 urologists received gifts from TAP), which computated the amount
>>>>>>of money per Lupron prescription the doctor could earn, also harbored a
>>>>>>‘secret key’—and in the event the secret computer program was in danger
>>>>>>of discovery, a secret key was struck and !presto! all incriminating
>>>>>>information disappeared.
>>>>>>
>>>>>>The first long-term follow-up of children who were accidentally exposed
>>>>>>to GnRHa's was published in 1999, and revealed that 4 out of the 6
>>>>>>children studied had severe neurodevelopmental abnormalities (including
>>>>>>seizure disorder). If that figure holds up in larger subsequent
>>>>>>follow-up of children ... I would ask - do you think there is a problem
>>>>>>here ... and what is the solution?' Archives of Ophthalmology, 2001,
>>>>>>carried an article with a telling title:Ocular Anomalies Seen in
>>>>>>Children Born After IVF'. On March 7, 2002 a new study was released
>>>>>>indicating that the former 2-3% rate of major birth defects from IVF - a
>>>>>>percentage always classified as consistent with the general population -
>>>>>>was, in fact, in error. This study now found a 9% rate of major birth
>>>>>>defects among IVF offspring. Will the percentage of birth defects from
>>>>>>IVF continue to climb?
>>>>>>
>>>>>>http://www.stemcellresearch.org/testimony/complete_hearing-2006-03.pdf
>>
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