Question:

Thank you for the HRT on Lupron explaination.  I just didn’t know anything about it.  I do know about HRT after a hysterectomy, but that’s it.  Good Luck with everything Velvet.   Tara http://community.webtv.net/tara_arat/TarasEndometriosis

Response:

Velvet, Just want to add my 2 cents worth. I’m not a doctor, scientist, etc.  What I AM, is a person who took lupron and ended up with (even almost 5 years post lupron) with health problems, as a result of taking lupron.  Even though I am not a doctor or scientist, I think my knowledge on lupron’s action (damage) to the body, is probably the same as the scientists and doctors – maybe my knowledge is greater, since I’ve lived through this (so far, anyways!)  But my point is this – I have been to about 10 doctors, post lupron, trying to find an answer to this puzzle, and so far, I have no explanation.  My current doctor has acknowledged all of this is lupron-related; she just does not know the "what" or the "how". In addition, as with other drugs, such as anti-biotics; their "targets" are the bad bacterias that may be causing a certain illness; however, anti-biotics kill the good bacterias, along with the bad, thus creating other problems; chemotherapy supposedly kills the cancer cells, but along with that, a whole lot of other things also get killed. The point is, I’m not sure exactly what the action of lupron is; I do KNOW that whatever the ANTICIPATED action is, and the theory of side effects to that particular action, is only a very small part of what happens in a body exposed to lupron. Theoretically, lupron should only have temporarily shut off my female hormones.  In reality, it did a whole lot more than that.  My female hormones have been shut off PERMANENTLY, and that is only one small part of what lupron left behind.  Because of this one verifiable effect, I’m theorizing that while lupron was shutting off "something", it also damaged that "something" irrevocably. In summary, you will not find the whole answer to lupron’s action or side effects in a package insert.  Perhaps some of the scientific data available should be telling the scientists something about lupron’s action in the body, but so far, I’m not finding those answers, and I won’t argue the point about what actually is being turned off, because I don’t know – but then I don’t think the so called experts can explain that either. Julie

Response:

I can answer one of the questions here, about HRT while on Lupron – the doses of HRT are VERY small – actually less than is needed to prevent bone loss if you were in genuine menopause.  Some people are put on this low dose HRT and some are not – I had a LONG discussion with my surgeon about it (and for me, Lupron WAS the last resort prior to a Hyst, my endo was SO agressive).  Basically the HRT was given just to take the edge off the side effects such as hot flashes, sleep problems, potential bone loss (though this normally doesn’t occur till you’ve been on Lupron longer than 6 months).  I was in two minds about taking the HRT, but I did to start with. By month 5, however, I knew endo was still in there, and made the decision to stop the HRT.  The hot flashes got a little worse, but they weren’t really terrible, I could cope with them, and didn’t see a lot of other symptoms (apart from mood swings, but I was expecting that and the only critters that were around me during this were my cats, and it’s very hard to have an irrational row with a cat). I do wonder if lupron vs lupron with addback is something that might be interesting to look at though.  Perhaps the reason I didn’t see any of the nightmare side effects with Lupron was due to the addback HRT, or maybe I was just lucky – I really don’t know.  It would be interesting to see if any studies have been done on this though. I believe we should start seeing less women being treated with Lupron – there was some new research findings released last year I think, at hte end of my time on Lupron, and my surgeon said had they been released earlier, it may have changed his decision to try Lupron with me.  As it was, I had only minimal shrinkage of endo in that 6 months, which is what the research highlighted too.  One of my endo cysts was 4.5 cm, and after 6 months lupron, it was 4cm.  NOT a vast improvement, by any means. I had one period after Lupron (my system returned to normal within 3 weeks) and it was yet another period from hell.  I’d already told my surgeon if the Lupron didn’t work and I ended up in severe pain again, I wanted a hysterectomy.  If nothing else, I didn’t want a period ever again.  I can live with odd twinges through the rest of the cycle, the occasional stab of pain – but not the hell that is my period.  A hyst seemed to be the most effective way of not only possibly ridding me of endo, but also stopping the cycle.  I’m now on continuous HRT, the minimum dose needed to prevent bone loss, combined prog and eost.  Should endo be a problem in the future (previous surgeries it’s come back within 2 months) I will drop the HRT and combat bone loss etc in other ways.

– Hide quoted text — Show quoted text – Wow!!!  This topic is really heated.  I just want to state no one can be considered right or wrong.  No one exactly knows.  I just shared my personal story with it.  Though I do think it’s strange most of the docs that prescribe it more often is regular OB/GYN’s and the endo specialists I know do not like to prescribe it because of "things it will do to your body".  This includes a doc that is famous for his endo work and is strongly supported by the Endo Assoc.  He only prescibes it as a last resort before doing a hyster only after all other drugs and options have failed. Some people do great, but most I have personally known and met through the net have had too many physical  and emotional problems after taking it.  I’m a little confused on the HRT while on endo.  Why put estrogen back in when you are taking something meant to stop it in the first place?  I’m just curious because I’ve never heard of it before. Everyone just needs to be careful when taking anything.  We all know there is no cure.  We are all on the same team.  I don’t want anyone else to go through all the crap I’ve had to. For all of you who are wondering about how I’m doing since having my ileostomy reversal…my pain is coming back.  It’s not as bad but it’s still getting in my way. Tara http://community.webtv.net/tara_arat/TarasEndometriosis

Response:

Wow!!!  This topic is really heated.  I just want to state no one can be considered right or wrong.  No one exactly knows.  I just shared my personal story with it.  Though I do think it’s strange most of the docs that prescribe it more often is regular OB/GYN’s and the endo specialists I know do not like to prescribe it because of "things it will do to your body".  This includes a doc that is famous for his endo work and is strongly supported by the Endo Assoc.  He only prescibes it as a last resort before doing a hyster only after all other drugs and options have failed.   Some people do great, but most I have personally known and met through the net have had too many physical  and emotional problems after taking it.  I’m a little confused on the HRT while on endo.  Why put estrogen back in when you are taking something meant to stop it in the first place?  I’m just curious because I’ve never heard of it before.   Everyone just needs to be careful when taking anything.  We all know there is no cure.  We are all on the same team.  I don’t want anyone else to go through all the crap I’ve had to. For all of you who are wondering about how I’m doing since having my ileostomy reversal…my pain is coming back.  It’s not as bad but it’s still getting in my way.   Tara http://community.webtv.net/tara_arat/TarasEndometriosis

Response:

I totally agree.  Lupron is risky.  I took the 3 month shot. My first was 1-00 and my hyster was in 7-00.  Almost a year ago.  My organs never recovered from the shots like they are "suppose to".  In my opinion Lupron is evil.  The worst part is losing your mind.  I got so depressed (hormone imbalance) that I often thought of suicide, so I was put on heavy doses of Zoloft (another medical evil).  Anyone thinking of Lupron, please be careful. Tara http://community.webtv.net/tara_arat/TarasEndometriosis

Response:

I find it interesting that you mention that you had M.E. My mum had M.E. about 10 years ago. I was diagnosed with endo 1 and a half years ago, and they found endo in mum when they did a hyst 2 weeks ago to remove cysts on her ovaries (she has also had adhesions totally obstruct her bowel – yet every doctor told her there was no chance of endo!). Now I also have 2 aunties with endo and my grandmother had endo (although, I do have a VERY large family). Has anyone heard of an association with endo and M.E? My grandmother also had Thyroid problems and 3 aunties with thyroid probs. I have heard of an association between thyriod problems and M.E. I have also wondered at times if I have problems with M.E. I get so fatigued sometimes. However there can be many causes of fatigue, and I guess endo can cause it too. I really think there could be an interesting link here. Mel

Response:

Yes, I agree wholeheartedly with you Kim – we both are in search of the truth.  My own search covers many many things – the why I got Endo – how it grows – what I could have done different in the way I dealt (fingers crossed) with it – and much much more.  I’ve had M.E. too, and I wonder sometimes if that played a part, since some thoughts are that is linked with the immune system – yet another disease they still don’t fully understand. There’s just so many things we still don’t know about Endo – and unless someone makes it their life work to know Endo inside out, to read every bit of research done on it, and on the drugs that have been tried, seen/taken part in surgical treatments – I don’t think they can be expected to know everything there is (currently) to know about it.  I think a lot of us end up more in touch with Endo and the different attempts to control it than many doctors – just through the fact that we have a very personal interest in Endo and what it is doing inside us.  While GP’s may deal with it as their patients present themselves, I don’t think that unless you have lived with endo, you can ever fully understand just what it can entail.  My own regular GP admitted she doesn’t know Endo in all the little details – I was very fortunate to find a sugeon (he’s an Gyn too, with a special interest in Endo) who not only knows about it, but actively seeks out information, AND is totally honest with me.  That took a lot of convincing, I can tell you – but now he knows I am a rock solid person that can accept the facts and deal rationally and logically with them, he tells me everything straight up. I’ve caught him a few times when he’s been ‘breaking things gently’ and been quite straight with him that I know the score with Endo – and he knows the medical terms don’t throw me either  The downside is, that in another few years, IF endo recurrs (and it might, despite me having had a hyst) he will probably have retired  I will cross that bridge IF it ever comes up. Sadly, I don’t feel there is sufficient research into Endo currently.  In some ways, I think the current forms of controlling it, whatever they may be, can detract in some ways from the overwhelming impact it can have on a womans life.  We seem to go down the road of trying just one more treatment, then when it doesn’t work, well there’s something else to try – and if it doesn’t work, fall back on pain control.  I understand there will always be time while a ‘new’ treatment is being used, before we really find out how good it is to treat Endo, but I don’t think that should be an excuse to not push forward the research into the hows/whys of Endo and maybe one day find the root cause of it. I’m rambling now (and it’s not the aftereffects of lupron <g) – long day at work, I’ve been up since 5am and only just got home at 7pm.  On top of that, I’m off out tonight to a hobby club. I guess I’m back to normal after my hyst at the end of Jan Painfree hugs to you all, Velvet

Response:

Suzanne, Thank you!  I really believe that it is important for all of us to share experiences and know all the risks.  Especially about things our doctors don’t tell us.  Forums like this are a great tool for that!    But Lupron is a hot topic and can turn into very ugly arguements at times. That is not my intent!!!  Our lives are painful and complicated enough.   Thanks again! Kimb  

Response:

Velvet, I agree that this is all very confusing!  There is a LOT of conflicting information out there and it is very hard to find the truth!   I also agree that everyone should do their own research.  I info I post is only intended to be a tool to aid in that research.  A tool to be looked into further, as you stated you will do.   We are very fortunate to have so much information at our fingertips.  Many people do not.  Or didn’t years ago… I try really hard to separate what I know factually and what my personal physical/emotional experience has been.  I think in the end we both want the same thing,  the truth from our doctors, before we take drugs that may have serious effects on our lives.   Good Luck in your search!! KImb

Response:

That’s ok – I meant to tag to Kim’s post but got attached to yours instead. Velvet

– Hide quoted text — Show quoted text – <<I still see NO information there that indicates lupron acts on anything other than the specific hormones we’re interested in. << Hi Velvet Well.. I wasnt saying that the patient insert for Lupron supported or didnt support either side of the "argument" I really just wanted to let women know that if they wanted to read the patient insert included with Lupron (as well as the other pharmacological info).. that they could find it and read it atthe  rxlist web site. I agree this is a hot issue.. and each woman needs to do her own research and trust what she chooses to trust. I wish everyone the best in working through all the tough decisions we face with having endo. Love to All Eileen K

Response:

<<I still see NO information there that indicates lupron acts on anything other than the specific hormones we’re interested in. << Hi Velvet Well.. I wasnt saying that the patient insert for Lupron supported or didnt support either side of the "argument" I really just wanted to let women know that if they wanted to read the patient insert included with Lupron (as well as the other pharmacological info).. that they could find it and read it atthe  rxlist web site. I agree this is a hot issue.. and each woman needs to do her own research and trust what she chooses to trust. I wish everyone the best in working through all the tough decisions we face with having endo. Love to All Eileen K

Response:

Kimb, your knowledge and experience (unfortunately) with Lupron is extensive. This drug scares the hell out of me and I never even took it. TAP is monopolizing on endometriosis patients and many doctors in the worst of ways. Coupled with the fact that they are charging such an outrageous price for a single shot makes me so angry. Thank you so much for all the work you have done helping yourself and other women with endo, you make this world a better place. suzanne – Hide quoted text — Show quoted text – Vevlet, The Pituitary Gland actualy regulates over 150 hormones.   May I simply suggest this…Tatke a package insert to a pharmacist or a neurologist and aske them straight out…"Does Lupron SHUT OFF the Pituitary GLand".   I’m afraid you may not like the answer.    It is in the package insert…It’s deciferable. Either way…the "flooding" you speak of occurs the first month.   The bodies defense trying to ward off or store up on things it may need.   I’m not really clear on that part.  The "why" it does this.  My Neurologist hasn’t been able to give me a clear explanation.  (I should say none of my neurologists as I’ve seen many and ALL know how Lupron works.  As it is stated clearly) The "side-effects" that most of us feel on a short term basis are the effect of the pituitary being shut off.  Every effect listed can be clearly drawn back to this cause. AS far as those of us who are permanently sick or had disasterous effects…That part is the gamble.  It’s a risk.   Now My doctors can see where certain things went wrong and come up with theories of why.  Those I’ve listed.   Things that have happened to thousands of others.  Why does it happen??  It just does!  That is a risk of this drug.  A risk that doctors need to be telling people. As far as just shutting off the pituitary…if that didn’t cause any long term problems or there was NO risk factor involved, that would be different. Perhaps there was a time when they thought short term shut down had no problems.   Problem is now that they know it can cause problems…no one has bothered to tell our doctors or to stop it.  TAP’s little secret. Velvet…The information that I post about Lupron isn’t Rocket science.  If I’m just theorizing I’ll say that.  If I’m guessing I’ll say that too.   I don’t expect anyone to take what I say as expert opinion.  I am a little bias…I’m sick because of Lupron.  But I have dedicated some serious time into finding out EXACTLY why I got sick! Like all information it should be used as a tool.  I posted where I got it, how I deciphered it and who to ask to verfiy it.  Some women have trouble finding a doctor to believe them or listen to them after Lupron.   I have been extrodinarliy lucky.  ALL my doctors have not only believed but some have worked at learning more.   I even moved to a new state only to have new doctors pick up where the other left off.  They can’t fix me…but they do their best to keep me well.  AS well as they can.   They also do what they can to study the progresion of the cataclysmic reactions that have occured. I am sure there are a LOT of things that go on in this country that you would find hard to accept.  Things most of us would find hard to accept.  But they go on anyway!!  After I learned more about Lupron and what had happened to me and how many others there were I had a LOT of questions about the FDA.  Where were they through all this?  Where are they now?   They know what is happening. They have the records, yet they do nothing.   The FDA does NOT work the way you think it does and it is NOT set up to protect us the way I thought it was. But now I’m changing subjects..sorry…but the FDA does have a lot of information that is public about Lupron.  Including the over 8,000 complaints and the deaths.   I find it ironic that some drugs get pulled when 5 or 6 people die from it.  Yet drugs like Lupron who have FDA records of over 80 deaths are still on the market.   Amazing! Anyway, I am sorry if this upsets you.  That is NOT my intention.   Perhaps my goal is to motivate you into taking what I have said and challenging it.   Take it to a Phamacist and/or Neruologist and ask them for an explanation.  Ask them how lupron works.  Ask them if it shuts off your pituitary gland and what the potential problems are.  Don’t expect your GYN to know this.  The brain is NOT their area of expertise!! Kimb

Response:

I still see NO information there that indicates lupron acts on anything other than the specific hormones we’re interested in.  It is an analogue of only ONE hormone, and acts on only the hormones which are dependant on that that one. This information seems patently clear in everything I’m reading, and I’m VERY worried that if I can understand this (and, this also tallies with what my surgeon told me AFTER I’d done research on Lupron a year previous) why it seems to be that other docs etc can’t.  Next time I see my doc, I *will* ask her, and if I’m wrong, I’ll post it here. If there are places I can go that actually state how it is affecting the entire pituitary gland, I would be VERY interested to read it (cut and paste with a link or just the link).  I’m always open to other information about this issue – because if I am indeed wrong about the way it works, then I don’t want to be part of the problem about Lupron.  At the moment though, I’m just stating everything I read about it, and my own personal experience with it. (And just for info, rxlist.com states exactly the same info I’ve found elsewhere, and exactly what my surgeon explained). This is a huge and very confusing issue – and I guess the one overriding fact we CAN all be sure of is to do your own research if contemplating Lupron, gather as much info as you can, and make a balanced and well informed decision.  At the end of the day, it is a personal choice, made for personal reasons. Velvet

Response:

Hi I wanted to mention that if anyone is interested they can also read the patient insert for Lupron as well as the whole detailed pharmacology of it.. at the web site… www.rxlist.com type in Lupron.. do a search and click on Lupron … You will find the actual patient info insert that is supplied with Lupron .. as well as pages that go in to the pharmacology of lupron and the side effects etc etc..   Its a good resource for drug info. Eileen K

Response:

Vevlet, The Pituitary Gland actualy regulates over 150 hormones.   May I simply suggest this…Tatke a package insert to a pharmacist or a neurologist and aske them straight out…"Does Lupron SHUT OFF the Pituitary GLand".   I’m afraid you may not like the answer.    It is in the package insert…It’s deciferable. Either way…the "flooding" you speak of occurs the first month.   The bodies defense trying to ward off or store up on things it may need.   I’m not really clear on that part.  The "why" it does this.  My Neurologist hasn’t been able to give me a clear explanation.  (I should say none of my neurologists as I’ve seen many and ALL know how Lupron works.  As it is stated clearly) The "side-effects" that most of us feel on a short term basis are the effect of the pituitary being shut off.  Every effect listed can be clearly drawn back to this cause.   AS far as those of us who are permanently sick or had disasterous effects…That part is the gamble.  It’s a risk.   Now My doctors can see where certain things went wrong and come up with theories of why.  Those I’ve listed.   Things that have happened to thousands of others.  Why does it happen??  It just does!  That is a risk of this drug.  A risk that doctors need to be telling people. As far as just shutting off the pituitary…if that didn’t cause any long term problems or there was NO risk factor involved, that would be different. Perhaps there was a time when they thought short term shut down had no problems.   Problem is now that they know it can cause problems…no one has bothered to tell our doctors or to stop it.  TAP’s little secret. Velvet…The information that I post about Lupron isn’t Rocket science.  If I’m just theorizing I’ll say that.  If I’m guessing I’ll say that too.   I don’t expect anyone to take what I say as expert opinion.  I am a little bias…I’m sick because of Lupron.  But I have dedicated some serious time into finding out EXACTLY why I got sick! Like all information it should be used as a tool.  I posted where I got it, how I deciphered it and who to ask to verfiy it.  Some women have trouble finding a doctor to believe them or listen to them after Lupron.   I have been extrodinarliy lucky.  ALL my doctors have not only believed but some have worked at learning more.   I even moved to a new state only to have new doctors pick up where the other left off.  They can’t fix me…but they do their best to keep me well.  AS well as they can.   They also do what they can to study the progresion of the cataclysmic reactions that have occured. I am sure there are a LOT of things that go on in this country that you would find hard to accept.  Things most of us would find hard to accept.  But they go on anyway!!  After I learned more about Lupron and what had happened to me and how many others there were I had a LOT of questions about the FDA.  Where were they through all this?  Where are they now?   They know what is happening. They have the records, yet they do nothing.   The FDA does NOT work the way you think it does and it is NOT set up to protect us the way I thought it was.   But now I’m changing subjects..sorry…but the FDA does have a lot of information that is public about Lupron.  Including the over 8,000 complaints and the deaths.   I find it ironic that some drugs get pulled when 5 or 6 people die from it.  Yet drugs like Lupron who have FDA records of over 80 deaths are still on the market.   Amazing! Anyway, I am sorry if this upsets you.  That is NOT my intention.   Perhaps my goal is to motivate you into taking what I have said and challenging it.   Take it to a Phamacist and/or Neruologist and ask them for an explanation.  Ask them how lupron works.  Ask them if it shuts off your pituitary gland and what the potential problems are.  Don’t expect your GYN to know this.  The brain is NOT their area of expertise!! Kimb

Response:

Sorry, but I can’t accept this.  We may end up agreeing to disagree on this – but the chemicals in Lupron don’t shut off the whole pituitary gland. I’m willing to accept that in some individuals, a reaction might be seen that would seem to suggest this is so, but all the information I read (and I read A LOT prior to taking it, since I’d heard the horror stories) indicated that the chemicals in Lupron caused it to shut down selective hormones, by ‘flooding’ the system with an analogue of the hormone which regulates the amount of some of the hormones the pituitary gland produces, but leaves others unaffected. All the information I read described Lupron/Leuprorelin as a GnRH, which alters the Luteinizing and Follicle-stimulating hormones secreted by the Pituitary gland, but not the remaining half dozen other hormones.  More specifically, Lupron/Luprorelin/Leuprolide is an analogue of Gonadorelin. Gonadorelin is released by the Hypothalamus, and controls the synthesis of only the two hormones I mentioned above. I know for some women Lupron is hell on earth – but I wanted to put my side of it – that it IS possible to take it and NOT have these side effects.  I know it’s pot luck, and you won’t know till you go there – but I felt it necessary to put my experiences of it, which have been positive, rather than negative. I believe Lupron (and there are slightly different synthesised types of it, from what I recall reading, this might account for the differing opinions here) CAN be useful to buy short amounts of time, where endo is concerned. For me, it gave me 6 months in which I could make up my mind what to do next with my battle with endo.  To be able to have 6 months of no periods, with none of the assosciated pain that can cloud judgement, was a very valuable time for me. Velvet

– Hide quoted text — Show quoted text – Velvet I really don’t want to start an arguement here!!!!  I just really want to clarify some facts about lupron that I know.   I took it in 1992 and have spent a few years studing everything I can get my hands on to learn everything I can about this drug and what it did to me and so many others. So to say: Lupron shuts down SOME hormones, not all.  If it shut down all, our bodies would utterly cease to function.  It works by overwhelming the pituitary gland, thus preventing it signalling for production of the hormones we’re interested in here. I’m afraid isn’t correct.   Lupron works by shutting OFF the pititary gland. That means that it does shut down ALL hormones essential to life.  This is why so many of us get sick.  This is what causes the side effects.  The pititary gland is resposible for over 150 hormones…they ALL stop.   Not only do they stop but so does the production of neurotransmitters like Seritonin, Dopamine, etc.. They Thyriod gland relies on the Pituitary gland to help it produce TSH. During a course of Lupron the Thyriod gland cannot function properly because of this.     The Adrenal-Pituitary Axis is disrupted and for many the Adrenal innsoficiancy is severe and permanent. The fisrt month there is an increase in hormone output.  Just like you right before something bad is about to happen your heart beats faster and you get an adrenoline rush….Same thing… Some people do cease to function.  Other come pretty close to it!!!  Even the best Neurologists in the world will tell you they know less than 5% there is to know about the brain.  Yet doctors are willing to give us drugs that alter brain function.  Scary! This information is in the package insert.  Your doctor, EVERYONE’S doctors don’t. I don’t expect anyone to simply take my word on what I have just typed. Take it to your doctor and challenge.   And I don’t mean have them read it and shake their heads.  Make them LOOK it up in front of you!!!  If they are unwilling to do so  FIRE THEM!  They are not worthy of you! Kimb

Response:

I know that this is a little late but I’ve been away.   I noticed that you said that you were beginning body building.    I think that body building may help reduce the pain.     I am 43 and have had endo for 20 years. Looking back, the most pain free times in my life have been when I lifted weights.   During those times, I had very little body fat (I even reduced my bra size from 34B to 32A).   I understand that estrogen is stored in the fat.  Body building may be a Lupron free method of controlling endo.  The point of Lupron is to stop estrogen.  Why not do it naturally?  I just wish I had access to a facility and the energy.

– Hide quoted text — Show quoted text – and thats all. He said this will throw my body into menopause. I know you’ve heard that before, but let me tell you more… I have endometriosis and am going in for a semi-surgical procedure called endometrial ablation, or some refer to it as "rollerblade". I’m told that the result of the Lupron injection will make the tissue of my uterus thick and spongy so all of the effective uterine tissue will be burned, thus ending or substantially limiting my monthly bleeding. My doc has no intentions of putting me on continued shots, and seeing as how the one "cure" for endo is surgery, which is planned, the question is, will one shot have lifelong side effects? I am 43 and a beginning bodybuilder. I do daily aerobics with my husband and am active in general with two small children, and we will not have any more children. If this Lupron shot (a $600.00 injection) will change my life for the worse is it better to live with Endo? PLease let me know your thoughts. I want to keep building my body, stay active and fit. Thanks very much for your input. Operagirl PS I’m using my husband’s profile, thus the male name on the header.

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Velvet I really don’t want to start an arguement here!!!!  I just really want to clarify some facts about lupron that I know.   I took it in 1992 and have spent a few years studing everything I can get my hands on to learn everything I can about this drug and what it did to me and so many others. So to say: Lupron shuts down SOME hormones, not all.  If it shut down all, our bodies would utterly cease to function.  It works by overwhelming the pituitary gland, thus preventing it signalling for production of the hormones we’re interested in here.

I’m afraid isn’t correct.   Lupron works by shutting OFF the pititary gland.   That means that it does shut down ALL hormones essential to life.  This is why so many of us get sick.  This is what causes the side effects.  The pititary gland is resposible for over 150 hormones…they ALL stop.   Not only do they stop but so does the production of neurotransmitters like Seritonin, Dopamine, etc.. They Thyriod gland relies on the Pituitary gland to help it produce TSH.   During a course of Lupron the Thyriod gland cannot function properly because of this.     The Adrenal-Pituitary Axis is disrupted and for many the Adrenal innsoficiancy is severe and permanent. The fisrt month there is an increase in hormone output.  Just like you right before something bad is about to happen your heart beats faster and you get an adrenoline rush….Same thing… Some people do cease to function.  Other come pretty close to it!!!  Even the best Neurologists in the world will tell you they know less than 5% there is to know about the brain.  Yet doctors are willing to give us drugs that alter brain function.  Scary! This information is in the package insert.  Your doctor, EVERYONE’S doctors I don’t expect anyone to simply take my word on what I have just typed.  Take it to your doctor and challenge.   And I don’t mean have them read it and shake their heads.  Make them LOOK it up in front of you!!!  If they are unwilling to do so  FIRE THEM!  They are not worthy of you! Kimb

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I’d like to add, it is possible to have lupron with add-back hrt.  This is what I did, and I’ve seen no side effects thus far.  Just for info, drugs were lupron-type (Prostap) and addback (tibolone).  Addback helps with the menopausal symptoms, just takes the edge off.  Also helps bone loss, though studies apparently show bone loss is very rare until you’ve been on treatment more than 6 months. Lupron shuts down SOME hormones, not all.  If it shut down all, our bodies would utterly cease to function.  It works by overwhelming the pituitary gland, thus preventing it signalling for production of the hormones we’re interested in here. Velvet

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John Galloway  asked: – Hide quoted text — Show quoted text – and thats all. He said this will throw my body into menopause. I know you’ve heard that before, but let me tell you more… I have endometriosis and am going in for a semi-surgical procedure called endometrial ablation, or some refer to it as "rollerblade". I’m told that the result of the Lupron injection will make the tissue of my uterus thick and spongy so all of the effective uterine tissue will be burned, thus ending or substantially limiting my monthly bleeding. My doc has no intentions of putting me on continued shots, and seeing as how the one "cure" for endo is surgery, which is planned, the question is, will one shot have lifelong side effects?

Hysterectomy and Lupron treatments are not cures for endo. There is no cure. I am 43 and a beginning bodybuilder. I do daily aerobics with my husband and am active in general with two small children, and we will not have any more children. If this Lupron shot (a $600.00 injection) will change my life for the worse is it better to live with Endo? PLease let me know your thoughts. I want to keep building my body, stay active and fit.

Lupron works by shutting down all horomone production in your body, not just estrogen. Women develop autoimmune disorders and other severe illnesses from Lurpon. It was first created as a form of chemotherapy to treat men with prostrate cancer. Many who have recieved this ‘treatment’ lose bone mass ( as it does induce menopause) and severe joint pains which do -not- go away after discontinuing use. Other woman have borne children with severe birth defects after use of the drug. Thanks very much for your input. Operagirl PS I’m using my husband’s profile, thus the male name on the header.

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Hi.  I did 6 months of Lupron, and came out the other side resuming all normal functions of ovulations etc (including endo).  I understood lupron did the reverse, IE it turns the uterus lining thin and keeps it thin.  I had no problems with the Lupron (or what for me was a similar drug to Lupron, but works the same way), and have been off it since dec 2000.  I’ve since had a hyst, due to the endo recurring, and so far things are going well. I’m guessing it may be age related, but lupron acts on the pituitary gland, shutting down the production of oestrogen and progesterone.  I was told it can take 2-3 months to build up in the system, and then 2-3 months out the other side for hormones to revert to normal.  (Mine were ‘normal’ the following month, ie, within 4 weeks, for what it’s worth). I’d also question if the endo is just within the uterus.  Mine was everywhere else but inside it… ovaries, tubes, outside of uterus, pelvic cavity lining, etc. Louisa

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Operagirl, I am confused as to what exactly your doctor thinks he is "curing".   Neither the shot nor his surgery is going to "cure" anything.   There currently is NO cure for endometriosis and an Endometrial Ablation is not a typical treatment for endo.  Surgcical removal via Laperoscopy is the way Endometriosis should be removed.  Where is your endo?     Before you do anything with this doctor I would strongly suggest you get another opinion!!!   Have you ever had a laperoscopy before?  A lap is the ONLY way endo can even be diagnosed!   Any doctor willing to risk a patients health with drugs like Lupron without even knowing "if" they have endo or not should NOT be "practicing" medicine!   You also did not mention if the doctor was going to give you a 3.75 mg shot or an 11.25 mg shot.   Only one shot but the doage makes a BIG differance.  One lasts for one month while the other lasts for 3 months.   BUT it would be immpossible to say how much Lupron it would take to cause permanent damage to any one person.   Some it only took one 3.75 mg shot, while others it took several.  I had 6 injections.   I could not tell you which "one"  caused the catastophic reactions in my body.   It just kept getting worse, I kept getting weaker, sicker…9 yrs later I am still sick!  Hindsight is always 20/20…Perhaps if I had my tarot cards read prior to my first injection or bumped into a psychic…something that could have warned me of my impending doom…If I could predict that for you I would…but it’s not that easy…It’s more like russian roulette. Please get another opinion! Kimb

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and thats all. He said this will throw my body into menopause. I know you’ve heard that before, but let me tell you more… I have endometriosis and am going in for a semi-surgical procedure called endometrial ablation, or some refer to it as "rollerblade". I’m told that the result of the Lupron injection will make the tissue of my uterus thick and spongy so all of the effective uterine tissue will be burned, thus ending or substantially limiting my monthly bleeding.

Endometrial ablation is (usually) for excessive menstrual bleeding, not for endometriosis. You will still have ovarian function, just possibly won’t have bleeding or it will be light. I suggest that you research endometrial ablation and get a second opinion. Has your doctor discussed the possible complications of endometrial ablation? Lupron suppresses the ovarian hormones and the uterine lining. The endometrial lining should be THIN at the time of ablation. Your doctor is wrong in his statement regarding the uterine lining. http://www.oxfordclinic.co.nz/conditions/endometrial.htm http://www.rscbayarea.com/articles/formendo.html There are several different types of ablation. http://www.gynalternatives.com/ablation.htm The site below is a discussion group about endometrial ablation. It has women’s personal experiences. http://home.att.net/~endometrial_ablation/ My doc has no intentions of putting me on continued shots, and seeing as how the one "cure" for endo is surgery, which is planned, the question is, will one shot have lifelong side effects?

What *surgery*? The ablation? It isn’t a *cure* for endometriosis or even recommended as a treatment.(as far as I know) I had endometrial ablation and it didn’t lessen my bleeding at all. Nor, did it lessen my pain. Gwen – Hide quoted text — Show quoted text – I am 43 and a beginning bodybuilder. I do daily aerobics with my husband and am active in general with two small children, and we will not have any more children. If this Lupron shot (a $600.00 injection) will change my life for the worse is it better to live with Endo? PLease let me know your thoughts. I want to keep building my body, stay active and fit. Thanks very much for your input. Operagirl PS I’m using my husband’s profile, thus the male name on the header.

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Hi, I know little about endometrial ablation, but it sounds like what your doctor’s thinking is this: in the first month of lupron, hormone levels usually go UP, then with subsequent months of it they go down so that period stop.  So, it seems he is thinking that by triggering your hormones to go up, it will increase your uterine lining to its maximum, then he will remove it in the procedure.  I don’t know if this is common practice before an endometrial ablation.  I think it’s also hard to give you a guarantee that one shot will not cause any long-term problems, but I will say from what I’ve seen, it’s more likely to happen with longer-term use (or repeated treatments).  But again, I wouldn’t want to say that it means you would definitely not have a problem.  If you’re concerned, can you find out if your doctor would do the procedure without the shot?   Murphy

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and thats all. He said this will throw my body into menopause. I know you’ve heard that before, but let me tell you more… I have endometriosis and am going in for a semi-surgical procedure called endometrial ablation, or some refer to it as "rollerblade". I’m told that the result of the Lupron injection will make the tissue of my uterus thick and spongy so all of the effective uterine tissue will be burned, thus ending or substantially limiting my monthly bleeding. My doc has no intentions of putting me on continued shots, and seeing as how the one "cure" for endo is surgery, which is planned, the question is, will one shot have lifelong side effects? I am 43 and a beginning bodybuilder. I do daily aerobics with my husband and am active in general with two small children, and we will not have any more children. If this Lupron shot (a $600.00 injection) will change my life for the worse is it better to live with Endo? PLease let me know your thoughts. I want to keep building my body, stay active and fit. Thanks very much for your input. Operagirl PS I’m using my husband’s profile, thus the male name on the header.

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