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Re: Seeing ob/gyn next wednesday! - Lupron's VERY BAD

From: LupronSUX (anonymous@obgyn.net)
Sat Jan 31 10:40:02 2009


According to the website, "http://www.lupronvictimshub.com" Lupron's not only BAD but it's also RISKY, DESTRUCTIVE, PROBLEMATIC AND SOMETIMES FATAL.

The following was posted there:

This page will be devoted to addressing the Deaths of Males, Females, and Fetuses following the use of lupron/leuprolide.

The FDA maintains an Adverse Event Reporting System (AERS) for all drugs - reports that are submitted voluntarily by health professionals and consumers following an adverse event to a drug.

In March 2007, I requested AERS data on lupron/leuprolide, under the Freedom of Information (FOI) Act, and at that time the FDA reported there were 15,571 reported adverse events to lupron/leuprolide, with 296 reported deaths from lupron/leuprolide, involving 3,189 individual safety reports.

It should be remembered at all times that the incidence of reporting adverse events to the FDA, according to studies, has been found to represent a mere 1% to 10% of the number of actual adverse events experienced. Therefore, if taking the rate of a 1% reporting incidence, the 296 reported deaths signify a potential total of 29,600 deaths.

It should also be remembered that by the turn of the century, the National Lupron Victims Network had accumulated surveys from 10,000+ lupron victims ... clearly in excess of the FDA's 2007 number of "3,189 individual safety reports" from lupron/leuprolide. It is blatently obvious that the number of actual lupron adverse events are not being accurately reported to or reflected in the FDA AERS reporting system.

At present, I only have the FDA's adverse event reports for the period of November 1997 through December 2006, and do not yet have AERS for the period of 1984 through October 1997, nor from January 2007 to present. Because of my repeated illness and hospitalizations, a complete review of this data (and an updated report) remain pending.

The FDA AERS FOI Reports reproduced at left fyi, have been provided in their entirety and contain all information as found in the FDA AERS FOI Reports. A number of these AERS FOI Reports lack critical information, such as "duration" of lupron/leuprolide. In the AERS FOI Reports, the phrase "Preferred Term" is defined by the FDA as "The reported reaction, in medical terminology [as coded by MedDRA], describing the event." The phrase "Primary Suspect" is defined by the FDA as "The drug that the initial reporter deemed most likely to be associated with the reactions." A "Concomitant" drug is defined by the FDA as "A list of any drugs taken at the same time as the suspect medication, but not suspected of causing the adverse event."

It would appear that most reports of deaths after the use of lupron/leuprolide for the time frame November 1997 through December 2006 are for older men undergoing palliative treatment of prostate cancer. I will post some, but not all, of these older male prostate cancer deaths at left, and for a website where you can find more examples of male deaths, see 'Patientsville' link (below).

The majority of women are prescribed lupron/leuprolide for benign and non life-threatening conditions (although some women are prescribed lupron/leuprolide for treatment of cancer). Treatment of benign conditions in women should not result in death (or serious illness). As I review the 1997 through 2006 FDA AERS FOI Reports and locate female and fetal deaths, all of these will be posted at left.

The FDA does not make its AERS FOI Reports available online, but these reports are available from the FDA for a fee, when requested under the Freedom of Information Act. AERS reports are provided on CD-ROM or in paper copy.

There is also a non-governmental website that has posted a partial selection of lupron/leuprolide adverse events and deaths (2007 - 2008) online: http://www.patientsville.com/medication/lupron1_side_effects.htm.

The FDA, TAP, Abbott, the medical community, and doctors 'advise' that "information in FDA Adverse Event reports has not been scientifically or otherwise verified as to a cause and effect relationship and cannot be used to estimate the incidence of adverse drug reactions."

Tell me then, FDA, 'TAP', Abbott, the medical community and doctors - if there is no scientific or other type of verification to explore the cause and effect relationship ... how does the incidence and significance of adverse lupron/leuprolide reactions become established? If people who become seriously ill or die after exposure to lupron do not raise an alarm and warrant substantive investigation ... what does? If the former 10,000+ National Lupron Victims Network did not cause 'concern' ... what will? If the current thousands of women complaining on the internet is not significant ... what would be? If all the settled lupron lawsuits are not indicative of 'a problem' - how many lawsuits will it take? How much of a critical mass in suffering and disability is required to warrant an investigation? How many deaths will it take?

This page is under construction.

Last updated: January 18, 2009

At Sat, 31 Jan 2009, Cassie wrote: >

I'm sure Megan doesn't need to know >it's "BAD stuff".
>
>At Sat, 31 Jan 2009, anonymous wrote:
>>
>>Please research lupron here and on google. It's BAD stuff.
>>
>>At Sat, 31 Jan 2009, Cassie wrote:
>>>
>>>Megan,
>>>
>>>Thanks for responding. It's unfortunate that these doctors weren't
>>>taking your pain seriously. I've been lucky that as far as I know, this
>>>is the first cyst to cause me terrible pain and that was because it
>>>ruptured.
>>>
>>>I hope the lupron goes well for you! My aunt has terrible periods and
>>>has had cysts that cause her so much pain she almost passes out. The
>>>E.R. and doctors tell her the same thing they all told you, that there
>>>isn't anything that needs to be done. She thinks she has endo but won't
>>>get a lap or treatment.
>>>
>>>Where were your incisions for your laproscoptomy? And why did they use
>>>stitches? When I went to the E.R. I had a laproscoptomy for my appendix
>>>and I've only got 3 incisions. One about 3 inches below my belly
>>>button, one on my belly button, and the other about and inch above it.
>>>They are covered with bandages but no stitches. I just have to wait for
>>>them to heal and go to the Dr. for a followup to make sure they are
>>>healing ok. I thought all of the lap surgeries were performed the same
>>>way.
>>>
>>>--
>>>Cassie
>>>
>>>At Fri, 30 Jan 2009, Megan wrote:
>>>>
>>>>Hey,
>>>>
>>>>My name is Megan, and I am 20 years old. I was diagnosed with endo two
>>>>weeks ago through a laproscopy. Today I started lupron. I got my
>>>>period as normal on the 30th of December. I always have really painful
>>>>periods so I didn't think too much of it, but by New Year's Eve, I was
>>>>hurting so bad that I went to the ER. Not thinking that anything was
>>>>terribly wrong, they treated me for my pain and sent me home with meds.
>>>>Two days later, I was laying on the floor of the ER crying my eyes out
>>>>because I was in such horrific pain. They did an ultrasound, a
>>>>transvaginal ultrasound, and a pelvic exam. The doctor came in, and
>>>>told me that I had fluid that showed up on the ultrasound, which he said
>>>>was from a ruptured cyst. He sent me home with more pain meds, said I'd
>>>>feel better in a week or two, and told me to make an appointment with my
>>>>gyno. That was Friday, January 2. Well, I called my gyno on Monday,
>>>>and he was out of town, but I got an appointment with the doctor that
>>>>was covering for him on that Thursday. I showed up that Thursday
>>>>morning, and because of an insurance snafu, I was unable to see a gyno.
>>>>I left the office practically hysterical, because I was hurting so bad,
>>>>was so desperate to see a gyno, and I wanted to get to the bottom of
>>>>this. I went back to the ER that same day, where they looked at my
>>>>ultrasound results, told me the same thing as the last ER doc, and sent
>>>>me home with pain meds. They gave me a referral for a new gyno, I
>>>>called him, and got an appointment with him the following Tuesday,
>>>>January 13. He spent almost an entire hour with me that Tuesday, and
>>>>explained everything in great depth. I had never been so impressed and
>>>>comfortable with a doctor before. He told me that they could go in and
>>>>clean out the fluid and look around at everything, or that we could keep
>>>>waiting for me to get better. After talking to my family, I decided to
>>>>do the lap. The very next day, January 14, I had a laproscopy. It
>>>>actually wasn't even all that bad. I was diagnosed with endo, so I
>>>>didn't have a ruptured cyst after all. They made four cuts, I got my
>>>>stitches out eight days later, and with the help of my doctor, decided
>>>>to choose lupron as the next step. I have already been taking birth
>>>>control for the last three years, specifically loestrin, because I can't
>>>>take higher dose birth control, because I get migraines. I got the
>>>>lupron shot this morning. I'm very worried about potential side
>>>>effects, but I'm really trying to stay positive and optimistic. So far,
>>>>I've had a bad headache for a few hours, and where they gave me the shot
>>>>really hurts. You're correct that there is no way to diagnose endo
>>>>unless they are in you (during surgery) looking at it, but the surgery
>>>>really isn't too bad. So I wanted to let you know that I am now
>>>>experiencing endo at a young age. If anyone has anything I can help
>>>>with or just wants to talk or whatever, you can email me at
>>>>megsly@gmail.com
>>>>
>>>>Hope I helped a little bit!
>>>>
>>>>-Megan
>>>>
>>>>>>Last Friday I went to the E.R. with pain in my side thinking it was my
>>>>>>appendix. They did a CT scan and said there was "stranding" around my
>>>>>>appendix and needed it removed via laproscoptomy. While in there the
>>>>>>surgeon found a ovarian cyst. The biggest cyst he has ever seen. It's
>>>>>>bigger than a baseball. It had ruptured and my appendix was sitting in
>>>>>>a pool of fluid and blood from my cyst, the cause of the stranding. The
>>>>>>surgeon called an OB/GYN and described the cyst. I have an appointment
>>>>>>with the obgyn but the cyst is still there. I believe I could have
>>>>>>endometriosis from my symptoms. The doctors said they would probably
>>>>>>put me on birth control and I wouldn't need another surgery. Doesn't
>>>>>>the surgery have to be performed in order to be diagnosed with endo? I
>>>>>>don't have insurance and am not sure if I can handle another surgery,
>>>>>>mentally. I am 21 years old and this is starting to wear on me, even
>>>>>>though it is early. Hopefully I'm worrying for nothing but a cyst that
>>>>>>big couldn't be for no reason! Has anyone had experience with endo at a
>>>>>>young age?
>>>




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