Re: porting Lupron??
From: andrea (anonymous@obgyn.net)
Thu Oct 11 19:44:21 2007
Hi Lisa,
I know what you are saying, but I do really think the percentage of
people who get sick from Lupron is hidden somehow or very underreported.
That article I just found said that the FDA had gotten nearly 7000 phone
calls back in 1999 from people reporting their side effects from it and
there were 25 deaths. That was almost 10 years ago...so I wonder what
it is now?
Even if I had taken Lupron and it had taken away my pain and made my
life better, I would still want it off the market, because too many
women are suffering from it.
I don't know if you had a chance to look at that article (the link I
posted), they did some studies back in '99 and they found that nearly 7%
of bone mass is lost and could not be recovered after discontinuing the
drug. The leaflet says approximately 3% of bone mass can be lost, but
it is reversible. So, that means the company knows, but is not being
honest with doctors either.
If they want to keep this drug out there, they definately need to be
more truthful about what it can possibly do to a person.
At Thu, 11 Oct 2007, Lisa H. wrote:
>
>I am sure that there are people that have had severe side effects to
>Lupron. There is no doubt in my mind that the reactions are severe and
>devastating, there is so much talk about Lupron on this site and others,
>and there lies the evidence that something is wrong.
>
>But not all medicine effects us the same. Maybe there are only a small
>percentage of people that have horrific side effects, it doesnt lessen
>the damage or the suffering! I used the Vioxx example in an earlier
>post... not everyone had a heart attack, but there were deadly
>reactions that occured. I remember there was one young woman, in her
>30's, that had a heart attack and died!
>
>I was put on effexor last year and I had a terrible reaction. I
>complained to my doctor on a few seperate occasions and she told me to
>"tough it out" that it would work and I would feel much better because
>it was a good drug. Many people swear by that drug but I got sick as a
>dog and it took about 6 months before I felt right after
>discontinuation. I was miserable! But that doesnt mean that all people
>or many people have this reaction- I read on the internet about
>troublesome side effects after I started having problems and it SEEMED
>like alot of people had problems because I was looking for the
>information. But, just like when you buy a new Honda Civic, you start
>to notice that car alot more on the road, giving yourself the illision
>that Civics are everywhere.
>
>Effexor was dangerous for me.... Lupron is dangerous to some of the
>women on this forum.... but I wouldnt jump to the conclusion that it
>causes problems for everyone and that there is a cover up or that women
>are not speaking up. If millions of prescriptions are written every
>year, then we would hear about the problems of lupron if most women got
>sick from it. Like I said earlier, it doesnt lessen the damage of those
>that have suffered just because a small percentage have been effected.
>And if you tell a doctor that most women get horribly ill from Lupron
>and that is why you dont want to take it, they are going to get
>frustrated with you because the evidence isnt there to prove that fact.
>They are going to say you dont know what you are talking about. I
>remember when I told my doctor about the "findings" i found on the
>internet about effexor and she laughed in my face. "Internet? Well,
>that isnt exactly professional medical advice". And she was right. But
>I DID have a reaction, it does not happen to everyone, and she took me
>off of it. And I suffered for awhile and then we found something that I
>could tolerate.
>
>If you dont want to take Lupron, and I wouldnt take it either, then
>dont. But I wouldnt go to a physician and tell him or her they dont
>know what they are talking about when it comes to a drug that they
>prescribe.
>
>~Lisa H
>
>At Thu, 11 Oct 2007, andrea wrote:
>>
>>Maggie,
>>
>>Last night, I sat and wrote a letter to the woman who started the Lupron
>>petition. I asked her how old this petition was, what the outcome of it
>>was and why there only were 400 signatures on it. I told her that I
>>believe that TAP goes so far as to somehow cover up how many people are
>>hurt by this. I think maybe they can hack into sites and delete some of
>>the signatures or something. I don't believe that there is an accurate
>>number anywhere of how many people are sick from this and my goal is to
>>somehow find that number!!
>>
>>Every Lupron victims site only has a few hundred people on it, when if
>>the reports are true, that there were over 2 million Luporn
>>prescriptions written just from 1997-1999, then there should be way more
>>people complaining of illnesses. There was a phone number on that
>>article that I posted to the FDA and to TAP.
>>
>>I don't believe for a minute, that the numbers are s so low! I don't
>>think it's a matter of them NOT KNOWING, it's their bread and butter and
>>they want to somehow keep hidden all the reports of injury due to this
>>drug. That, and I think people become too sick after taking it, and
>>feel they can't fight. Emily, the woman I wrote to, was in a class
>>action law suit against TAP, well, here was her reply back to me:
>>
>>--
>>Andrea, thanks for writing! I never did anything with the petition
>> because I just couldn't get enough signatures. I know countless women
>>who've had a horrible time after taking Lupron, but for whatever reason,
>>I
>> just couldn't get more signatures. I don't even remember the website I
>> had it on (refresh my memory please!). It's been around 5 years. I also
>> was part of a class action suit (with four other women from Florida)
>> against TAP Pharmaceuticals for how sick it made us, but our doctors
>> wouldn't back us up, so we ended up settling for VERY little money. I'm
>>afraid at this point, I don't have a lot of energy left to fight.
>>However,
>> if you come up with any great ideas, I'm game to help in any way I
>> can. I'm happy to discuss the lawsuit further with you so you know what
>> we're up against and can plan ahead. Anyway, I'm sorry I'm not more
>>enthusiastic - it's been a long hard week and I'm worn out. I don't in
>>any
>>way want to discourage you. I hope you WILL take up this cause, and as
>>I
>> said, I'm happy to help if you do. I just can't LEAD the fight any
>> longer. Let me know if you need me to lend a hand with anything.
>>
>>Love, EM
>>Group Leader
>>EndoCenter of St. Petersburg
>>
>>HERE IS THE PETITION:
>>
>>http://www.ipetitions.com/petition/Depot-Lupron/signatures-1.html
>>
>>Gosh, all I wanted was to find a website of women who were suffering
>>with endo like me to talk to when I was sad, but after reading about so
>>many of you that have suffered due to Lupron, it makes me feel lucky
>>that I always refused it. My stupid cramps are nothing compared to what
>>many of you go through everyday. I could have easily been a victim of
>>it too, though. I think about this night and day and want to find a way
>>to make TAP and the doctors pay and make them admit of their wrongdoing.
>>
>>At Thu, 11 Oct 2007, mdustin wrote:
>>>
>>>The more time that goes by, mind you, I have only been 4 months off of
>>>Lupron...I would like to report my side effects to someone...TAP...the
>>>FDA, someone. Has anyone done so? Reported their side effects,
>>>continued or not to someone other than their doctors? I am curious about
>>>who I should contact and how to go about doing it.
>>>
>>>Possibly, part of the problem is that TAP is unaware of just how many
>>>women and men mind you, have had serious side effects from Lupron.
>>>Therefor, why should they do anything about it? Atleast, that is what is
>>>in their warnings. Adverse side effects are hardly mentioned, and only
>>>mentioned that it happens very infrequently. With all that I have read
>>>from the women that it has effected, I wonder if anyone has reported to
>>>the correct people or not? I know that i have not yet and am interested
>>>in doing so.
>>>
>>>Does anyone have any advice on how to do so?
>>
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