doll
Junior Member
Posts: 62
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Lupron
May 26, 2007 13:24:51 GMT -5
Post by doll on May 26, 2007 13:24:51 GMT -5
Hello!
I belong to another Endo Support Group and one of the members posted this yesterday. Thought I'd share it with all of you in hopes it would help someone if it could!
Some of you may remember that I've been diagnosed with some strange things after years and YEARS on lucrin/lupron and i can now say i seriously have permanent side effects.
The quest to discover what was going on began in earnest after i had my baby in 2003 and stopped lactating in 2004. I began having horrible, horrible facial sweats. I had been having the night sweats for years already.
Between 2004-2006, i was treated by my OB, a specialist GYN, rheumatologist, orthopedist, neuropsychiatrist, physiotherapist, psych therapist, regular GP, an anesthetist for pain management, specialist ophthalmologist and finally an endocrinologist. next week, i will see my first new doc for 2007, a neurologist. all the specialists treated/treat are problems which are secondary to lucrin/lupron. my bones and cartilage are disintegrating, my body is constantly inflamed, I've got glaucoma, migraines, some blood disorders ( i bruise and bleed really easily).
I ran/run a constant low grade fever, have no immune system, was/am constantly tired, in constant pain. endocrinologist tells me that my thyroid was/is not working as well as my pituitary gland, had basically packed it in. i had a very serious anemia, vitamin D deficiency, negatives in many hormones. i was basically functioning because of my ADHD meds. She told me that the pituitary gland will stop working after a major hemorrhage, like one during childbirth.
Well, I've had two-three of those and have had uncountable numbers of unstopped internal bleeding from torn adhesions. I now live on vitamin supplements and more hormonal supplements, as well as pain meds, aspirin, and goodness knows what else.
I also never sleep at night because i have to wake up every hour or so because my limbs 'fall asleep' while I'm sleeping and i have to wake up and shake them out. so, I'm having a nerve conduction test this coming week. It seems this is part of another constellation of problems that goes with the thyroid/pituitary problems.
Now, get this: I've taken the lucrin/lupron off and on since 1987. Yes, men with terminal cancer only get this drug for 6 months yet young women, whose health and often fertility are trying to be preserved, can be prescribed this for years, in cycles of 9 months at a time. Does that make sense?
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Lupron
Jun 1, 2007 21:02:31 GMT -5
Post by iluvmaghreb on Jun 1, 2007 21:02:31 GMT -5
Hi all,
I have been on Lupron since January. The first 3 or so months were basically ok-- I had mainly hot flashes. After I got my last 3 month shot on May 1-- and even a little before that, I had terrible hot flashes, plus body cramping like the flu; I have also been having psychological side effects. I am having concentration/memory problems, some anxiety, depression, agitation and irritation, and even sometimes hyper-- then maybe not too long after that, I will feel very fatigued and in slow motion. I am not on add back therapy., combined estrogen and progestin. What have people's experiences been with this? These side effects have really interfered with my work and sleep-- thankfully I am on medication to help with the latter. I won't be getting any additional shots, but I am also concerned about what will happen after that, since I am not ready to get pregnant due to other issues. However, I wouldn't say that someone should not go on lupron, because everyone is different.
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Lupron
Jun 3, 2007 5:39:25 GMT -5
Post by cherry on Jun 3, 2007 5:39:25 GMT -5
Here is a question posted by positivity in another thread about the long-term use of lupron Hello, does anyone have experience with being on lupron for extended periods of time? I'm a little worried b/c I had two 6-month periods of receiving lupron and then I started my second round which has been continuous since july of 2005! Its the only thing that helps my bowel problems and pelvic pain. If I get off of it, I notice it comes back within 2 months. The doctor plans to keep me on it until I get pregnant. I'm not even married yet but I plan to within the next few years. I have osteopenia already at age 26. My first daughter never gave me add back therapy so thats probably why. My new dr. gave me prempro so that should help. I want to have a baby and I want to make sure it doesn't do harm to the fetus once I stop. I know during you shouldn't get pregnant b/c of the risks. But what about after? I hate taking drugs but my side effects from lupron are very minimal so I love it. Any info on this? I asked a nurse that specializes in the drug and she says "honestly I've never known anyone on Lupron as long as you!" that was comforting! I just don't feel like I can go on with out it though.
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Lupron
Jun 7, 2007 20:18:35 GMT -5
Post by ouchy on Jun 7, 2007 20:18:35 GMT -5
Posted by member scarletmoon in another thread. I have been going to a specialist my doctor here at home recommended. I have found out I have Interstitial Cystitis and have been receiving Heparin Cocktails for that, and also getting physical therapy for my cramps and backpain. I have been twice, and my 3rd visit I finally saw the new Doctor for the first time. He has prescribed Lupron!! I am terrified. I was on Femara/Letrozole for 6 months and that made me feel awful the whole time. I can imagine what this is going to do. I have gone over it so many times that Ive driven myself crazy. Tell me something guys...why would he prescribe birth control pills and Lupron together. If the Lupron is going to send me into menopause why use birth control? Also, I am to take Emirol for my bladder problem, Atarax a anti-histamine, and finally Elavil!!!!! which is also used as a anti-histamine....The elavil scares me too....I dont want to be exhausted, sore bones and joints, low to no sex drive, and be a space cadet all at the same time!! Is all this really worth it??? Ann
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Lupron
Jun 7, 2007 20:30:49 GMT -5
Post by ouchy on Jun 7, 2007 20:30:49 GMT -5
Hi, scarletmoon. Did he diagnose your cystitis with a bladder scope? THat would bite for you to be on all these drugs to find out it's not what you really have, unless, of course, it was diagnosed the right way.
I haven't heard of b.c. pills and lupron together, but I have heard of the same synthetic estrogen in b.c. pills (ethinyl estradiol--something like that) used while taking Lupron. Haven't heard of regular b.c. pills, though.
BTW, if you feel in your heart that you shouldn't go on Lupron and all that, it's your choice. Don't let anyone pressure you in to it.
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Lupron
Jun 7, 2007 21:39:01 GMT -5
Post by scarletmoon on Jun 7, 2007 21:39:01 GMT -5
some of that might make sense Ouchy....yes I did have the tests for the IC.,I agree that I have it...and Im not so much bothered by that and taking the meds for it as I am the Lupron and BC Pills. I said in an earlier post that I thought that maybe my cramps have gotten better and maybe the endo better since not eating dairy. But he didnt even really listen to what I had to say about that. He just immediately put me on all these meds without hearing about my own findings. Why are Dr.s so quick to prescribe all these meds??
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Lupron
Jun 7, 2007 21:47:43 GMT -5
Post by ouchy on Jun 7, 2007 21:47:43 GMT -5
Free lunches! The drug reps cater lunches! I saw it just today when I went for my ultrasound. Crazy. Yah. I know you're more concerned about the Lupron and have every reason to be. I just wanted to make sure they weren't giving you a whole lot of stuff on half diagnoses. But looks like you had the full thing. I'd say find another doctor who listens to your concerns if you are having a difficult time making up your mind and need more info on why the b.c. pill + lupron would be the regimen.
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Lupron
Jun 8, 2007 1:00:47 GMT -5
Post by emlincoln88 on Jun 8, 2007 1:00:47 GMT -5
I've been on Depo-Lupron twice now. Although I'm not entirely sure of the difference between Lupron and Depo-Lupron is, I had a horrible experience the first time with the depo, and a fairly plesant experience with the recent one. I had faily nasty night sweats, hot flashes, didn't notice too much weight gain, mood swings, hair loss. I did also go though a period where I had several pedi-mal siezures a day, and this was possibly related to the Depo-Lupron, although I haven't had any seizures yet this time. Dispite the siezures, I would recommend using Lupron, I like it enough and it seems to be doing the trick most days.
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Lupron
Jun 14, 2007 7:58:03 GMT -5
Post by scarletmoon on Jun 14, 2007 7:58:03 GMT -5
I went to the doctor on Monday, had another heparin cocktail and talked to him a little about this drug. He said I shouldnt be worried and that basically it was no big deal. I dont like this man. He is not personable at all, and doesnt make me feel at ease. As I was leaving, the nurse called me on my cell and told me the shot was in and did I want to come back in and take it? I reluctantly turned around.... I dont know why I took it. 3 months worth all at once. I cant tell anything about yet, bacause Im on other drugs as well. Elmiron for my bladder 2 pills 2X daily. That pill makes you sick and your vision is blurry. Then Elavil! for Im not even sure what....the first night I took it, the next morning I slept till 10 am. I couldnt get out of bed. Im going to ask more about this drug monday. I think he said it was really being used for its antihistimine properties. But Im not sure....I keep asking myself what have done??
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Lupron
Jul 25, 2007 17:59:29 GMT -5
Post by faithrunner2005 on Jul 25, 2007 17:59:29 GMT -5
Hi everyone,
I've been on Lupron for six months and I ended up switching doctors because I moved and the doctor who did my laparoscopy and took me through the six months of Lupron was too far away. Anyway, on my last injection with the doctor, he gave me the bum's rush out the door and I didn't feel like I had a good final exam. I ended up calling and scheduling an appointment with a new doctor's office within a couple of weeks. I saw the nurse practitioner who had me come back to see the doctor to discuss the Lupron therapy. You see, at this new doctor's office, she likes to keep patients on it for a year. So, I went back, saw the doctor, and she recommended another six months despite the fact that I have had horrible side effects throughout this experiences (insomnia, mood changes, memory issues, more issues with migraines, hot flashes, nausea, lack of desire, weight gain- pretty much everything that Lupron lists as a side effect). So, she prescribed another six months of the medication, and I am going for the injection tomorrow. I am probably posting on the wrong board, in which case, I profusely apologize, but it's just so dag gone depressing realizing that I'm not going to get to go back to myself like I thought I would this summer. Throughout these shots, I kept saying, "Okay, June is the last one, then you get to go back to yourself." Now, I keep thinking I'm going to be all over the place emotionally and the weight still isn't going to come off for another six months, at the minimum. Right now, the weight gain and sleeplessness are driving me up the wall and the moodiness is driving my husband insane. But, I'm doing it because the doctor feels that a year's treatment would give me the longest relief from the sever pain and give me the most time to try to have a baby. Now, I can only hope she is right and hope that pregnancy clears this up. So, if the question is, is it worth it? The answer is, I don’t know because these side effects are driving me insane. However, if I’m able to keep the pain away and it cleared up the endo enough to help me get pregnant, then yeah, this is worth it.
Thanks for letting me share my experience. It is my hope that anyone who has to use the Lupron doesn't have as rough as a time as I am having.
Kelly
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Lupron
Aug 10, 2007 23:56:40 GMT -5
Post by ouchy on Aug 10, 2007 23:56:40 GMT -5
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Lupron
Aug 12, 2007 14:59:35 GMT -5
Post by Jammie on Aug 12, 2007 14:59:35 GMT -5
I am scheduled for my 4th shot tomorrow and I am considering not getting it. The side effects are terrible. I have a general feeling of malaise and hot flashes, weight gain (already overweight) ang general depression. I must say that the pain is better and I am happy that the painful sex is a thing of the past, but I want to lose weight and feel normal again. I wish you luck and hope that you find something that works for you.
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Lupron
Aug 13, 2007 11:26:03 GMT -5
Post by faithrunner2005 on Aug 13, 2007 11:26:03 GMT -5
I am scheduled for my 4th shot tomorrow and I am considering not getting it. The side effects are terrible. I have a general feeling of malaise and hot flashes, weight gain (already overweight) ang general depression. I must say that the pain is better and I am happy that the painful sex is a thing of the past, but I want to lose weight and feel normal again. I wish you luck and hope that you find something that works for you.
Hi Jammie, I know where you are coming from with all of the lousy side effects on the Lupron- I have them too. I'm not trying to steer you one way or another, but I just want to give you another way to look at things. I've been on Lupron since January and the side effects are killing me because I'm so drained that it's ridiculous, but the only reason that I'm continuing these shots is because I have not had any pain and the shots are supposed to help keep the pain at bay for a little while once I'm off the shots, which is a big positive. However, I don't think that I will ever be able to do these shots again, knowing what I'm going through now. However, I hope you can get through whatever you need to get through to give you the best results. I have one more 3 month shot in October, so it's going to be a long stretch of months, but hopefully the results will make this torture worth it. Good luck with your treatment.
Kelly
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Lupron
Aug 19, 2007 18:37:17 GMT -5
Post by MOMofAVA on Aug 19, 2007 18:37:17 GMT -5
after MUCH MUCH research on this site along with dr's suggestions... I have started lupron this past friday. the 3 month injection... ((hugs)) to my fellow lupron-ies!!!!! ;D
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Lupron
Aug 20, 2007 20:50:19 GMT -5
Post by MOMofAVA on Aug 20, 2007 20:50:19 GMT -5
so... how long did it take you ladies to start getting the side effects???
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