I have been on Lupron twice and it was the only thing that ever worked for me. I would be on it still if it weren't so expensive.

I understand that.

However, I do not have a deadly allergic reaction to peanuts, but I am also aware that some people do.

That is why I post these things. For the chance to educate.

I am glad that it helped you. It did not help me. I am one of many people who it did not help and ended up having several undiagnosed problems that I did not have before this experience.

I have been on Lupron once and it was the best I have been in years. I got back into employment and was pain free. Unfortunately my pain returned 3 months after the treatment stopped. But after my next lap I am going back on it for 18 months which will be pure bliss for me.

Again...I am glad that it helped you. It DID NOT help me. I am one of many people who it did not help and ended up having several UNDIAGNOSED problems that I did not have before this experience.

"91 % of the patients who received leuprolide depot reported ADDITIONAL adverse effects (BESIDES vasomotor [hot flashes]) when given for endometriosis (1993)."

"Please note that it does not take 3 or 6 months of exposure (i.e. injections) to Lupron to develop these adverse reactions.
These problems can appear at anytime while on Lupron.
Problems may also develop after stopping Lupron."

Quoted from

http://web.archive.org/web/20030207093508/www.lupronvictims.com/percent.html

Geez, no need to be snappy. Lots of things haven't worked for me either and caused me terrible side effects....I read either on this site or another someone say Dr's shouldn't be allowed to do this to women...and I am saying It worked for me...it's the ONLY thing that worked...and if they weren't allowed to give it then I would have not had 6 months of normalness for once in my life. I know that you put this out here for education and I think that is so wonderful!!! But I think you need to be careful that you aren't scaring people to death about the one thing that may help them. Before going on anything any one needs to do ALL the research they can...and decide for themself if it's worth trying. Those shots can also be given in one month doses so if adverse effects were showing up right after the shot then you wouldn't have to wait months for it to get out of your systems.
Everything does have side effects....but not everyone who takes them will ever have the same sife effects.
Thanks for posting the info.

I am not trying to be snappy. I apologize if you took it that way. I am upset. Upset that my symptoms are ignored. Upset that I have to live like this untill someone will listen. Upset that what has happend to me can in fact happen to others, unknowingly, and what's worse, to children. I can't even imagine how awful that oould be.

I was warned (a little) prior to my being on Lupron. I was not warned however to the point that I hope to warn others. I honestly feel that if I had known everything, I would have chose not to take Lupron. I am only trying to help. Not scare. Educate. I am sorry that I am so upset, it is difficult to phathom the changes that I have been through in the past year and the fear of the unknown, undiagnosed problems that have only continued to get worse for me. I seem to be on a one woman crusade here, but I should be heard. That is why I am trying.

You have no need to apologize for being so upset. I have been dealing with this for 13 years, since I was 17...and only just got a confirmed diagnosis this past Mar. I am just as frustrated as you so I completely understand! I think it's great that you are trying to make sure everyone has all the information they can get. We all have to be proactive in our own care because the Dr's either don't know much about endo...or they are too busy to find out more...or they just don't care.
I hope you are able to find something soon that will work for you! Take care!

The following are my symptoms that I have been dealing with:

Dizziness, hot flashes, fatigue, headache, upset stomach, acne, joint/muscle aches, swelling (of pelvis/ankles/feet/hands/fingers), mental/mood changes, mood swings, difficulty concentrating, pelvic pain, pressure (pelvic), bowel problems, constant leg pain, bloating, urgency of urination, hair loss, abnormal hair growth ,spasms (in my legs, arms, stomach bladder and back,)sensation of burning/ tingling (in legs/feel/arms/hands), hives, itching, difficulty breathing, anxiety, depression, nausea, weight increase and decrease (fluctuation), rapid beating of the heart, sleep disturbances and nightmares, breast changes (including swelling, pain, cysts), body odor, constipation and diarrhea, flatulence, nose bleeds (every day), libido decrease,

Dimness of vision 8/19/2007**weird surge of numbness starting at the top of my head (such as a headache starting) and surged right down into the pit of my stomach. As this surge hit my face, my left eye went black. I couldn't see anything. Since then, I have had double vision, floaters in my vision, loss of peripheral vision, near black outs, near fainting,

Christine, if Maggie scared you or anyone else, she has apologized. And snappy, I'm sorry, I wouldn't call it that at all.

It's hard when you are going through something so serious and the medical establishment, especially in the US of A, won't deal with it the way they should.

I was on Lupron for 15 months. I had the once a month shot for 9 months, the first shot WITHOUT my permission, I woke up from surgery and was already on it.

I wasn't given any warnings only told of temporary menopause and loss of libido (which didn't matter since I was the big V at the time).

But my hair fell out. I lost vision. I lost brain matter. I gained 73 pounds in less than 2 months. Which is hard when you're small and less than 5 feet tall.

They put me back on it after taking me off after 9 or 10 months because I was hemorraghing. This has done permanent damage to my body and millions of others. And that was in 1998 when I began it. It's been almost 6 years since I've been off of it, and I still have horrible pain. Loss of bone and calcium and it has taken years for my hair to grow back among the many other symptoms.

I am a part of a support group.

If I could jump up and down and warn every person in the world, I would. I am now allergic to most things.

None of these problems did I have before the Lupron shot.

My thyroid has been permanently turned off. I was told that it would take years for my system to get rid of the Lupron because I was on it for so long.

I'm sorry but this is not fun. And I would do anything to spare anyone else.

I think of myself as the side-effect queen, NOW though I wasn't before.

You're right, it's up to everyone to make an informed decision on their own. But you cannot discont in anyway the things that so many of us are going through BECAUSE of the Lupron shot.

It is our duty to share. No one warned me. No one told me anything. I wish I had known before. I wish I had been given a chance to say no.

But I wasn't.

That's the difference. And that's why these posts are necessary.

If Lupron worked for you. Great. More power to you. I wish you the absolute best. But truly, believe it or not, you are in the minority. Men and women who have been on it now have issues.

Either way you slice it, it was never made for women in the first place. It was made for MEN with testicular cancer and then someone said, let's see if it works for women too. The folly of the American pharmaceutical industry.

Asprin works for some people too. But it usually doesn't leave people blind or in a wheelchair.

Sorry. I feel very strongly about this. Just as strongly as you do obviously.

Knowledge is power.

Know what you put into your body.

Killingsworth...
Call it what you want I thought it sounded snappy....I know she said she was sorry and I am fine. She and I are fine...I am glad she put the info out there. She in no way scared me....I have read all that stuff before....I did my research before I got the shot. I am glad that the women on here have one place to go to find all this info because it took me a lot of time to research it all.
Listen, you seem awfully defensive and I think you are getting the wrong idea from my post. I know it's not fun...really I do. I know how much you are suffering...and I am so sorry for that. I wasn't trying to make anyone mad I just wanted it known that it does work for some people with little or no side effects. I lost some of my hair too...but it stopped doing that eventually. But I did knew that could happen so it wasn't a big shock to me.

Christine, sweetie if you and Maggie are fine, great. So happy for the two of you.

And again, I did Not think she was snappy. Just like I am in no way Defensive.

You seem to be the only one giving out labels. (And I know that sounds like a personal attack - but it's not) Just an observation.

I qualified all of my statements by letting you know that the Lupron was given to me WITHOUT my permission and WITHOUT my knowledge, and that I was told nothing about it's real side effects, and actually did not find out about all of them until 3 years after I was on it when they were trying to discover what was wrong with me.

I still say Knowledge is power.

I still say know what you put into your body.

I still would NOT recommend it for anyone.

Even though everyone reacts differently to medication. However the long term effects are still not known with this medication.

There was no research available to me when I was given the shot.

None.

The only thing available was what the pharmaceutical company was telling us.

I understand your post perfectly. Again, I'm glad it worked for you. As it has for a few others.

But people need to make INFORMED decisions.

So they should hear from all sides of the issue. And they should know that if they develop the sort of problems that I have and the millions of other people who were just trying to get relief from unrelenting pain, and ended up in wheelchairs unable to care for their young children or unable to drive at night because a part of their vision is gone...and so many others -----that the USA will Not help them.

No one will even admit 13 years later that it is this drug that causes all these problems. It will be like all of the other drugs that cause problems. 20 years after it is brought to the table, after it loses money from a huge lawsuit when some doctor is brave enough to say it is Connected, then there will be an investigation and the real fun will start.

Look at America's history. Almost every drug they've ever given women beginning in the 1950s ended up being withdrawn from the market 20 or 25 years later because of the links to all the problems that they finally "Found".

Not defensive Christine.

Not at all.

Just want everyone to make an informed decision.

Know all there is to know about what goes into your body.

Get the chance I wasn't given.

I think that's fair.

But they need to know that if they take Lupron, it's a coin toss. 23 pages of side effects and I have all of them. I would have loved to get that chance.

You did.

I just wanted to say, that the education aspect of it is the reason that I continue to post any "new" information that I find. The information that I keep uncovering day after day is "new" information to me. This information was not given to me by my doctor or from the pamphelet given to me about Lupron. It was not on the main sites out there which tell of only "some" of the side effects. I had to dig and dig and dig and I am still not believed. I still really don't have answers.

I have not said that "no one should take Lupron", not once. All I said was I wanted to educate of the possabilities. That is all. Lupron is a heated subject for many and for different reasons. I understand that. And I am not trying to start conflict between anyone. I wish that I had this information over 9 months ago, before this all started. I might, just might have saved myself from what I deal with now. Saved my family and friends from the annoyence of my crusade. But that is not how things have turned out. Now, I need to stand up for myself and anyone else who is willing to listen. You do not have to agree with me, you can fight with me, saying that you didn't have side effects. But I did and do. It's as simple as that.

Hi Guys,
I wasn't trying to start a conflict either. And I AM SO GLAD THAT YOU ARE POSTING THAT INFO...I completely agree with you both that everyone needs all the info they can get in order to make the best decision for them. I did have side effects from the lupron but they were just hot flashes and minimal hair loss...that went away fairly quickly. I still liked what it did for me...but the reason (besides the cost!)I didn't go back on it was because my Dr couldn't tell me what being on this drug could potentially do to my fertility. I was only 28 (now 30) and still wanted the option of having kids...this disease itself can make having kids very difficult...but I didn't want to find out in 5 years that I couldn't have kids because of some drug that I willingly put into my body.
Killingsworth...did you really stay on that drug for 3 years straight!?!? I didn't understand if you did 3 years of 6mos on/6 mos off or just straight.
I'm so sorry if you guys thought I was being mean or something. I didn't mean it to sound like that. My pain level has been off the charts the last 5 days and that tends to make me pretty bitchy...I am so sorry!
Please keep up the great work of posting information that you find.

Hello again, Christine.

Thank you so much for the hug and the understanding. Believe it or not, I'm with you. When something works, you want it to continue.

I was on the Lupron for 10 months straight. But when they stopped it, I was placed on just progestrone. But I started to hemorrhage and it got very bad, and lasted for weeks. And since nothing else was working, they put me back on the Lupron. I still had a period the entire time I was on it. Just not a 12 day period like I do normally. I continued on the Lupron for another 5 months. Hence the total 15 months. I stopped it myself. I simply refused to get any more shots. I think if it were up to my doctors I would still be on it. Even now, they continue to offer it to me. "This time it'll be different. We know more now."

Ha! They won't be practicing on me with that stuff.

(My body doesn't seem to like synthetic hormones.)

But it took 3 years to find out what was wrong with me. My second surgery (for endo) was scheduled 2 1/2 years after the first one. But it was cancelled the day before because of all of the horrible side effects. The doctors were concerned about so many things that were going on and going wrong, they were upset that I might not do so well during the surgery. (Not to mention the 73 pounds that wouldn't go away, no matter what I did.) And that's when they started taking my complaints seriously and the testing of my blood, my bones, and so many other things started and it all lead back to the Lupron. No one admitted it in print, but it was the only common denominator for my new and sudden problems.

I totally understand about the pain. When it's bad, it's bad. I'm right there with you.

But don't apologize about your stance either. Lupron worked for you, and that's a good thing.

You were able to make an informed decision. BOTH times. The first time after your surgery, and now again while considering your fertility.

This is a good thing. You have the information and you can weigh it and decide what's best for you.

That's all any of us would want. All the information available. It's too bad that we can't get it directly from our physicians. (But that's nother topic). :)

I hope you feel better soon. And I truly wish you luck in the conception department. It can be challenging.