ENDO Messages for August, 1998: Re: Marla - National Lupron Victims Network

Re: Marla - National Lupron Victims Network

From: Druzgal (anonymous@obgyn.net)
Sat Aug 29 18:03:00 1998

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My comment about Lupron being used for infertility and fibroid shrinkage IS correct. While it was NOT approved for those uses, the fact is, that it has been and continues to be used exactly for those purposes. Whatever uses it is listed for, LUPRON is continually used (or misused as the case may be) for the shrinkage of fibroids and for infertility. Perhaps this information will assist in understanding where many different viewpoints are coming into play. Whatever and however that Lupron is supposed to be used, the fact remains that it is NOT used for those purposes so designated, and this is where quite a bit of the Lupron controversy is coming into play.

You are correct in your opinion that Lupron cannot be proven beyond a shadow of a doubt as the cause for many of the "side effects" that many of the women are suffering post-Lupron. However, when other factors are removed by process of elimination, what remains is, in most scientific circles, the accepted hypothesis. While yes, hair loss is listed as a side effect, unwanted hair growth is also a side effect - this is the same situation as occurring in some women with extreme weight gain as opposed to some women having extreme weight loss. While the same species are taking the same drug, opposite effects are occuring FROM THE LUPRON. Whether at some future point they will be able to account specifically for genetic differences, etc. which will explain why so many women have exact opposite effects from the same drug, that is exactly what happens.

The fact is, Lupron is Russian Roulette with your entire biological functioning, except your odds are better with Russian Roulette. The fact is, the majority of women who take Lupron are having side effects. The minority are not.

I believe that it is my duty to explain to anyone considering taking the drug what possible side-effects may come of this, just as you believe it is your duty to explain how wonderful the relief from pain was (it did relieve the pain from my endometriosis for that time period - unfortunately, with all the side effects that I have experienced and continue to experience, it wasn't worth the pain relief to undergo the other effects.)

Thus far I have undergone substantial chromosome testing as well as testing for immunological disorders, diabetes, thyroid functioning, etc. There is no medical explanation to date for the recurrent miscarriages. I am also now getting feedback (thanks to posting) from other women who are experiencing the same problem post-Lupron, also with no known medical explanation (one woman who's miscarriage ended up showing no fetus within the sac). While I am very happy that your experience with Lupron was wonderful, you have to understand that there are many, many of us out here who have had and are continuing to have difficulties after Lupron from which there are no other scientific explanations. We don't go around "blaming" all our problems on Lupron, and many of us, in fact, never realized that the connection could be made until Linda's network linked us with many other women who were otherwise "healthy" before Lupron, who's side effects post-Lupron are exactly that - POST-LUPRON SIDE EFFECTS.

Prior to Lupron, my blood pressure never went above 103 over 65. After Lupron, my blood pressure has never been below 130 over 88.

Prior to Lupron, my weight never exceeded 150. After Lupron, my weight never went below 120. This is despite daily exercise and diet maintenance. The metabolism, which stopped during Lupron, has yet to kick in. It has been 6 years.

As I said - it's wonderful that your experience was positive, but it's way out of line to imply that our side effects are unrelated to Lupron. Your statements have indicated that you clearly do not understand the potential of this drug, and it's completely incomprehensible effects in a variety of different manners on different women. I'm glad that you are reading medical books, but you should do further research than that. All the medical books I have are pretty much out-dated by the time they hit the stands, and the most current research is in the periodicals and abstracts, constantly written by physicians. The medical texts are in fact funded and underwritten in fact, by many pharmaceutical companies. This is what the physicians read as well. And unfortunately, this is where much misinformation is coming about Gonadotropin Releasing Hormone Agonists such as Leuprolide Acetate (Lupron) and other drugs.

For the most current information on Lupron, as researched by today's physicians and clinicians, I suggest some of the following organizations and/or journals:

Center for Human Reproduction Fertility and Sterility abstracts Journal of Reproductive Medicine

It is unfortunate that we should all have to work so diligently just to keep up with the latest information on our own health as well as what drugs are on the market. But if we do want to be completely informed, that is what we have to do, and at the end, make our decision based on what others have researched for us.

I can say though, your follow-up to my post almost changed my mind on women making their own choices to take Lupron, but then I realized that I still wouldn't wish it on anyone, because of the side-effects which MAY occur.

Thanks to everyone who has taken the time to read my post.

At 12:18 PM 8/28/1998 -0400, you wrote: >I stand by my previous post 100% because it is my opinion of something
>and someone that I was privy to first hand as were many other women
>who were "victims" of Dr. Abend's personal attacks. I refuse to get
>into a pissin' match with anyone on this woman or her "network" or
>with anything else concerning Lupron. I stand by my statement that
>Lupron IS a person's choice to take or not to take and no one, not
>even someone with the supposed "Facts" should scare people into not
>taking a drug that may help someone live without pain (even if that
>painfree time is short lived). Indeed it HAS offered many woman that
>opportunity. I don't know about your situation personally, but there
>are times I wish I could die, because the pain is so relentless and so
>horrible. SO don't tell me that my choice of a drug should only be
>considered if my life is threatened. Because to me my endo pain makes
>my "very life" and the ability to LIVE a life threatened. I live with
>endo pain 24 hrs a day 7 days a week and have for over 4 years now,
>with pain for 15 years before that. It is a personal choice. I am
>not attacking Linda or her "network", I was simply stating the facts
>as they happened and there are many women who can back up what I've
>told you all. And you are wrong to state that some other meds that
>people can't take and have bad reactions to aren't to be compared with
>the "life long" effects of Lupron. Some of these very people you are
>referring to have died from taking a drug they didn't know they were
>allergic to, and others have complications that they might have to
>live with forever because of a bad reaction to the drug. I don't
>think that there are as many people who've taken Lupron and suffer the
>side effects for life that you think there are. I'm not saying people
>won't or don't, but it isn't a horrible drug for everyone. The side
>effects you live with aren't necessarily from taking Lupron, you do
>know that don't you? I'm not saying they definitely aren't, but to
>give Lupron credit for 5 horrible miscarriages isn't really fair, and
>usually people complain of hair LOSS not growth, as it reduces certain
>hormones, decreased sex drive can be a part of hormonal imbalance,
>yes, but so can it be from pain that happens with sex when you have
>painful intercourse from endo or other pelvic problems, but it isn't
>fair to blame everything you have wrong with you now, just because
>they happened AFTER you took Lupron. You could say the same thing
>about an aspirin( or fill in the blank with a drug ____) you took that
>preceded a lifetime of troubles as well.
>
>Anyway, I'm not going to argue with anyone about Lupron or anything
>else for that matter. I've enough to deal with in my life than to
>worry about Linda's network. I just want people to be aware that she
>herself never has taken Lupron nor has she ever had endo and she was
>extremely nasty to each and everyone who didn't agree with her opinion
>and that isn't just putting out the facts... that's getting angry
>because someone doesn't see it YOUR personal way. I know people don't
>always agree, but I felt I needed to add my opinion and PERSONAL
>EXPERIENCE into the pot. I just think that Lupron is a personal
>choice and that the opinion of those that have taken it should be the
>ones to offer the "scoop" on it. That's all. I'm sorry you had a bad
>experience with it. And as far as your comment that Lupron is used
>for infertility and fibroid shrinkage, you are incorrect. Luprons
>uses as listed in the Mosby's nursing drug reference is ONLY for:
>metastatic prostate cancer, and in the *management* of endometriosis.
>No one ever said it would cure it, we agree it is only a stop gap
>measure, but any relief is better than none. And if you are at a high
>risk for osteoporosis, you should definitely speak to your doc about
>it before using it. But it isn't recommened or even suggested in the
>medical books I have privy to for the use of infertility (I can't even
>imagine HOW it could be used for that), and it doesn't mention
>anything about fibroids. Also it shouldn't be used without a
>LAPAROSCOPIC diagnosis of endo. Don't give it more credit than it is
>due.
>
>In Friendship,
>
>Carey of John and Carey
>Florida
>
> ~~~~~~~~~~
>If you must take a step into the darkness of the unknown,
>believe one of two things will happen........
>either you will find something solid to stand on,
>or you will be taught to fly.
>
> ~~~Patrick Overton~~~
>
>John's web site: MENDO - Men and Endometriosis:
>http://www.geocities.com/HotSprings/Spa/8449/
>
>Carey's Endo Window - Includes "Endo Sister's Survival Kit" :
>http://www.geocities.com/HotSprings/Spa/8509/
>

Next message: anonymous@obgyn.net: "Have a question Help me please."
Previous message: Bruce: "take me off the list"
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