October 29th
2009
9:39 PM
I had my surgery July 16th. Last Lupron shot was June. My period has started back . I think it took about 2 1/2 months for mine to restart. I stop having the severe .irritating night sweats but I still get these off and on hot flashes that are not as severe as they were. I am hoping that the temperature changes will hopefully stop in the next few months. Although I don't like the body temp changes. I feel much better now that I don;t have the severe pelvic pain.back pain . severe abdominal pain . urinary tension and pain . difficulty standing straight and walking and excessive bleeding.
-- By virgo38 | Reply | Private Message me
October 25th
2009
6:10 PM
I'm 24 and just recently finished my lupron treatment for endo. I'm still having some of the side effects and have yet to start my period again. I honestly would've rather had surgery again for endo than go through months of the side effects. The memory problems, overall fogginess, night sweats, insomnia, mood swings, hot flashes, and just the stress and complete crappy quality of life I've had most of this year has completely affected all aspects of my life. It's not easy at work, at home with my husband- surgery took a day or so to recovery from and this has been a nightmare for months and months. I'd really think about it and research the benefits for you vs the side effects before doing it. If there are any other options- I'd absolutely consider them.
-- By jaroski | Reply | (2) replies | Private Message me
September 19th
2009
3:09 PM
I have just taken my sixth and FINAL Lupron shot. I was unaware of many of the side effects, like IBS. I am a lot different than most women. I was born with a birth defect called cloacal exstrophy. I am 41 years old and have lived my life with no bladder or rectum, due to extreme reconstructive surgery at birth. I have a permanent Colostomy and urinary diversion (ileal conduit). I do not have a very large amount of intestine, which creates an absorption problem of certain things, one of them being Calcium. I have also had severe orthopedic reconstruction since birth.
In December of 2008 they found a mass on the right side of my abdomen along with a hydrosalpinx. The hydrosalpinx was drained and I was then urged to start a 6 month cycle of monthly Lupron shots. There is a long history of endo in my maternal family. I have been advised that because of existing scar tissue from so many past surgeries a hysterectomy was not possible. I can not even have a laproscopy to determine that the growth is actually endo.
3 months into the shots I started to suffer extreme diarrhea, lasting from 1 to 3 weeks at a time post the Lupron shot...it was blamed on overgrowth from past surgeries, etc. It has become a terrifying experience for me. Due to my inability to absorb calcium well I now have several calcium kidney stones that must be broken apart with a laser. I have no idea what will happen with the GI symptoms or if they will continue once the Lupron "wears off".
I have no concerns about fertility, since having children has NEVER been an option for me. My concerns are surviving my life longer without additional risk to it from taking this drug.
I have had the usual symptoms of sweating, night sweats, fatigue, Hair loss, loss of appetite and occasional insomnia. Again, the most concerning to me are the kidney stones and GI problems I have been experiencing, including "sludge" in my gallbladder.
I am severely disheartened by the lack of looking at the whole picture, at least midway through this treatment. This is compounded by the fact that my treatment stems from one of the country's "top 10 Hospitals", which is a direct affiliate of the Children's hospital that did an AMAZING job of successful reconstruction in 1968. It is 2009 and I have fewer options to improve this situation than I did the issues from the original reconstruction in 1968.
I feel I never should have been put on this medication and am deeply concerned about my survival from here. If I could go back 6 months, as informed as I am now.....this IS NOT the path I would have chosen. I no longer know which Doctor to trust, what decision is best for me or how much more I can take.
If there are any AMAZING Dr.s reading this, please feel free to contact me...I am desperate, I do not feel that this should affect my survival rate and am willing to listen to alternative solutions IN THEIR ENTIRETY.
Anyone with a shortened GI tract, absorption issues, or previous health conditions should WEIGH ALL OPTIONS and do AS MUCH RESEARCH AS POSSIBLE before agreeing to this treatment. I placed trust and confidence first, not one of my better decisions concerning my health. I will not continue treatment with Lupron.
-- By cjcatz | Reply | Private Message me
September 2th
2009
4:15 PM
I just had my first shot of Lupron yesterday. I have an oversize uterus and will need to have it removed. I am 40 and do not plan on having any more kids, so that is cool. I am taking the shot to shrink my fibroids down to have the less invasive surgery because they are extremely huge at the moment. The same day I took the shot, I felt extremely drowsy and had to lay down to take a nap. I woke up and felt full of energy. The next day, slight tension in the neck and headache but that is it so far. I have some Premarin Estrogen tablets to take just in case of the hot flashes and night sweats but I am not taking those things unless I have to. I already had severe hot flashes and night sweats before all of this, so I am use to it..so its not a big deal..I also already had severe mood swings, extremely lethargic, and bouts of depression before all of this, so I really want notice the difference. So, so far, so good. I am not experiencing any side effects from the shot as of yet that I was already going through, anyhow..Each person is different..
-- By denise3664 | Reply | Private Message me
August 26th
2009
11:30 PM
I took lupron for about a year or so back in 1999. I don't remember a lot, just the hot flashes, etc, that I was warned about. I began to have memory problems a little. As the years passed by, it became worse. It is 10 years later and I have no short term memory. I have searched and searched to figure out what is wrong with me. My memory is gone. Its a sad thing, that this shot is still being given.
-- By cglortiz79 | Reply | (3) replies | Private Message me
July 30th
2009
9:34 AM
I was on lupron following a laproscopic surgery when I was diagnosed with endometriosis. I had two 3-month shots. I gained a little bit of weight, and had some hair loss. I would also recommend to people that they take add-back therapy like I did, it takes away a lot of the side effects, and I barely had any hot flashes or night sweats. In the beginning, I was so scared to get the shots with seeing all the horror stories online about what it has done to people, but for me I think it's a success story. I have been without pain for 10 months!
-- By morgansmissy | Reply | (1) replies | Private Message me
July 16th
2009
6:22 PM
I have severe endometriosis and am even severely anemic from the cysts that developed and my monthly cycle. I was going to an Oncologist for a year to receive iron infusions every three months. It is a two hour process. Not bad, but boring and sad because I was surrounded by cancer patients there getting chemo. I began my lupron shots May 2009 and it has been a Godsend! The pain is gone, I have more energy, I feel more alert and I am not sleepy all the time. My OB/GYN did put me on Wellbutrin as soon as I started getting the mood swings and that has been a tremendous help as well. The hot flashes and night sweats are really the only side effects I have to contend with. My OB/GYN wants to give me a prescription for low dose hormones but I refuse. I have lost a lot of weight over the years (174 lbs.) and am PETRIFIED of gaining it back. She told me that it was very likely that I would gain weight with the hormone replacement. I'd rather have the hot flashes and night sweats than gain any weight back as I worked sooooo hard to get it off and keep it off. Does anyone have any suggestions of any natural products such as herbs, minerals, vitamins, etc... that would help with those two side-effects?
-- By artemissa | Reply | Private Message me
July 7th
2009
12:13 PM
im currently on my fourth month of treatment with lupron and would like to know if anyone that had fertility problems was able to conceive after a course of lupron...? im 32 and have 2 beautiful children, but would like one more before i undergo a hysterectomy...i have been diagnosed with endometriosis, adenomyosis and severe pelvic adhesion's. i was in so much pain that it was ruining my life...the lupron has been pretty great this time around...six years ago i did it without any add-back therapy, but this time im taking progesterone along with it and the side affects have been minimal...still have mood swings and a decreased sex drive, but no hot flashes or night sweats. its definitely worth the pain relief...for me anyways.
-- By jen32 | Reply | (2) replies | Private Message me
July 1th
2009
4:36 AM
I have taken Lurpron Depot 3.75mg June 11, 09. I am due another injection July 09,09. I had to get a prescription of prometrium 100mg from the OB/GYN because of the night sweats and hot flashes.Since the injection, I have had and currently experiencing migraine headaches in the frontal lobe and temporal lobe areas. I have slight pain in the temples. I am going to see a neurologist because I was told the lupron may cause brain bleed with people whom have pituitary cancer. I would like to know if the CoQ10 and red yeast rice interacts with Lupron.
-- By twylha | Reply | Private Message me
June 8th
2009
12:18 PM
ok, so I am 28yrs old just had my second lap for endo and my doctor has recommended lupron, after reading this I am soooooooooo scared to even get near this med. Its like you either take this with the hope of saving fertility and no pain..or not and have endo ravage your body and you will live with unbearable pain!!! I have no idea what to do, my post-op surgery appt is this week, and i am so scared after reading this. Is there anyone that did not have weight gain, headaches etc...anyone that can testify that lupron actually worked for them? Cause right now its my health on the line, my ability to have children, my ability to have a normal life free of endo pain or these crazy, horrible side effects...please help me!!!
-- By lnbinion | Reply | (12) replies | Private Message me
May 28th
2009
6:16 PM
I just went in for my second shot of Lupron (out of a series of 6) for treatment of stage IV endometriosis. The most noticeable side effect I experienced was during my first menstrual cycle after my first dose of Lupron. I had never experienced menstrual pain or cramping (even though I had advanced endometriosis) until after Lupron. I have a fairly high pain tolerance and yet the cramping for the first 2 days of my period were almost debilitating. I had extremely heavy bleeding and have had spotting daily ever since (app.18 days). I have gained about 3 pounds because I have no energy at all. I'm usually active and work out 4-5 times a week but by the time I get off work, I'm too fatigued to do so (hence the weight gain I guess). I have hot flashes and night sweats all the time. The most recent side effect is high blood pressure. I have never had high blood pressure in my life (I'm a healthy 25-year-old woman) and when I went in for my 2nd Lupron shot today, they told me I all of a sudden do. I don't seem to have mood swings but do feel depressed and sometimes more anxious than normal. I have experienced a decreased interest in sex as well.
-- By thylacine0113 | Reply | (2) replies | Private Message me
May 23th
2009
12:08 PM
I have been on Lupron for almost four years for my endo. I have yet to get my period but have to say that while on the shot I had hot flashes, severe mood swings, and night sweats. All of the symptoms came in cycles and for the most part I felt great. I actually lost weight, and the best part, never got my period (duh). My sex drive fluctuated and I did experience vaginal dryness. I just want to get my period, it's freaking me out that I haven't gotten it over a month after I was supposed to take it last.
-- By lizzyliz | Reply | (1) replies | Private Message me
May 14th
2009
4:53 AM
Well, Let me offer a slightly more positive review of this drug. I have been on it for 5 months now and have one month to go. All my pain from the endo and the large cyst I had are gone, at least for now. Yes, I experienced hot flashes, night sweats, constant sweating actually, oily skin, nausea at first, and the two that are the hardest to deal with, acne and the weight gain. i think I've gained like 10 pounds, mostly in my stomach. From what I read on here it does not go back to normal after the drugs ware off as my Dr. assured me it would. Is that right? Has anyone gone back to normal weight wise after the drug? Oh, and I did have a mood swing here and here in the first 2-3 months but actually my mood is much better as the add back therapy had fake progesterone in it and I think my body was lacking that. I guess I'm happy with it as long as I can loose the weight afterward.
-- By sweetie1055 | Reply | Private Message me
May 11th
2009
6:13 PM
I was on the Depo Lupron for 4 months. I had all the typical side effects; hot flashes, acne, night sweats, and weight gain. All which I was told by my Doctor that are all normal.... I asked if there were any other major side effects and he said some, but with a very low occurrence and left it at that. Well, I started gaining more weight... I put on 15 pounds in less then a month. I had a lump on the side of my throat and couldn't figure out why I was so tired all the time, why my hair was falling out, and why my skin was so dry. I went online and read a little more about the drug and it's side effects. Yep, right there it said it was known to cause thyroid problems. So now I have to live with hypothyroidism, something that is manageable, but will never go away. All because this drug. I say if you don't need to take it, DON"T!
-- By nanny75 | Reply | Private Message me
April 25th
2009
9:52 PM
My girlfriend has taken a total of 2 Lupron shots. She is due for the third, but refuses to go back. The first shot did not due much, but after the second, the night sweats and hot flashes came. Now, she is always tired, has been since a month ago, been having major headaches also. Feels sick at times and has gained 10 lbs. She is having acne problems and she even is taking a pill that is suppose to stop that problem. I have never seen a drug like this junk. The doctor never told her of all this, just said this will help with the stage 3 endo she has. DO NOT TAKE THIS JUNK!!! It is just another way for doctors to take your life away from you and still let you live.....
-- By concerned2009 | Reply | Private Message me
April 9th
2009
12:55 PM
I am in month 4 of a 4 month Lupron shot that my doctor gave to prepare for surgery. I was told I might get hot flashes, loss of libido, increased urinary symptoms for a few weeks. No one said anything and there was absolutely nothing in all the drug leaflets they gave me that would have prepared me for the the horror story that my life was about to become. As if having cancer was not bad enough.Since day 2 I have suffered so many bad side effects that I have lost count. The worst is insomnia and nothing has helped including high doses of Ambien. They suggested Lunesta but my health insurance company balked and even if they had said yes, my co-payment would be unaffordable. This stuff is more expensive than gold. I am exhausted all the time. I have terrible memory problems that are so bad that I can be talking to some I know really well and not remember their name. I am unable to concentrate on anything, my mood swings are unbelievable, I feel mentally disoriented and dissociated all the time, high blood pressure, racing pulse, high blood sugar, hot flashes, raging night sweats, dizziness, bad balance. The side effects that I can handle include nausea, headaches, diarrhea, joint and muscle pain. I am supposed to be on Lupron for 2 years. The only difference I see with my Lupron experience and others here is that my gender is MALE and I have early stage prostate cancer. Being male, my other serious Lupron side effect is complete impotence which is going to go on for a long while due to the radiation. I had radioactive seed implants into my prostate gland done a week ago and I have to follow this with 5 weeks of beam radiation. Lupron seems to be an equal opportunity drug. Lupron has messed me up so badly that for the past 5 weeks I have been off work on disability status with no chance of going back for at least a month and my Dr thinks that may be optimistic. No one seems to know how long it will take to get back to some kind of normal. I just could not function at work and ended up in my doctors office having a complete emotional meltdown. I would caution anyone, male or female, to consider Lupron very carefully before having it.
-- By gnarly | Reply | Private Message me
March 2th
2009
7:08 PM
I am 31 years old and I FINALLY have relief from the pain caused by endo. I have been dealing with this crap for about 14 years. I have only been on it for 1 month. The hot flashes are TERRIBLE!! But I guess it beats the pain. I have been reading some of the other people that have posted their side effects. Some of you are saying that you have been on Lupron for 1 year or even 2 years. My Dr. says you can only use if for 6 months. I guess I should've asked more questions. Any suggestions on what to do about the hot flashes - other than put a fan in my face??
-- By kseal888 | Reply | (2) replies | Private Message me
March 1th
2009
1:32 PM
I have been on the shot for going on a year now. I had a 3 month break. I was diagnosed with endometriosis about 2 years ago. I am currently 23. I think this shot was the best decision I ever made. It has been the best thing for me and the only thing that really seemed to work. I had the hot flashes and night sweats, but other than that it was amazing! I had heard nothing but horror stories and I was nervous about taking the injection. I can't actually use anything take anything else. I have been on many different oral contraceptives since I was 15 years old because irregularity, pain, and various other things. I also tried increase hormones levels in oral contraceptives and the depo provera shot. I would def not recommend that shot to anyone. I have found this to the be only thing that levels me out and allows me to feel normal! My only other options right now are the nuvaring (to see if it will work) and a hystorectomy (not really an option). I would recommend it to anyone, but do your research and don't expect miracles!
-- By ejk0024 | Reply | (1) replies | Private Message me
January 10th
2009
1:08 AM
I started Lupron in April of 2008. The year before this I worked HARD to lose 80 lbs. I finally got down to my goal weight because I was tld my endometriosis symptoms could be relieved if I wasn't overweight. I had a laparoscopy in March of 2008 confirming my diagnosis- Lupron was a last minute decision because of my age and status the doctor didn't want to do the hysterectomy right away. My endometriosis is spread throughout the body- including the lungs. While Lupron helped with the pain I was experiencing, it caused other pain. Pain that I can no longer even deal with. I became lethargic, depressed, and angry. My hair was falling out in large clumps. I didn't gain weight right away.. except a pound the first shot and three pounds hte second shot but I figured that was alright if it was only like 15 lbs total. I oculd deal with that. Here I am almost a year later. my last injection was in August. I gained a total of 47 pounds. I am a fat slob. I couldn't work out because my bones hurt so bad while taking the medication. No one around me knows what I went through physically. They al think that it was just some excuse to be a lazy fat cow but it truly HURT to move. Just simply walking from my bedroom door to my bed killed me. It hurt my ribs, my knees, my shins, my back. There were times when I couldn't even get out of my bed ebcause I just didn't have the energy. Then the depression started shortly after losing a large amount of hair. By now I am thinking about how ugly i've become on top of how fat I am. Nothing went right but my doctor pushed the shot. I figured hes the one with years of experience he couldn't possibly be this wrong. I trusted him. When I would go to him with complaints of my weight gain he would tell me to stop eating. The problem was... I wasn't eating. I was too sick to my stomach to bother. Then when I would get hungry i'd over eat. I bled a lot through the shots and I still had pain here and there but I was too afraid of what he'd put me on next if I complained. I started to forget simple things. My career was going down hill because they were sick of me not being 100% commited to my job any more. I cried all the time. I finally got sick of the weight gain while I was on my shots and I decided to work out regardless of how I felt and three times I passed out in the gym and was transported to the hospital where I had to listen to their advice on being overweight WHICH WASNT THE REASON I WAS PASSING OUT TO BEGIN WITH but no one wnats to hear what I have to say. Every one just assumed that I was this pig who never worked out in her life and over did it this time. What no one understood was that three months before the incident i was my average weight. I was tachycardic all the time- my normal resting heart rate while i was on my shots was 162. During a work out it would get up to 220!
Ive been off them since August and I haven't lost a single pound. I get up at 4am every day and work out. I park as far away as possible. I use the stairs instead of elevators. I eat healthy. I cut out extra sugars and stopped rewarding myself when I deserve it. I started these shots at 155lbs and today I am 215. Ive been on a strict monitored diet, diet pills and work out regimens and I am still 215. My knees kill me nad sound like velcro when I walk- ive even fallen a couple of times because they hurt that bad. My back still hurts and my neck still wont turn to the right completely because of a nerve that pinches or what have you in there that sends the sharp pain through my face when I move. I still have the depression but i think thats more because of my weight now than it is anything else.. and I finally ended up losing my job.
I recently saw my OB for a follow-up where he stuck me on yet another birth control. This one makes me vomit and gives me stomach cramps so Ive decided im done. I won't take another pill because its making me worse. Id rather have my uterus fall on the floor than pop another drug.
-- By jamielk | Reply | (5) replies | Private Message me
January 1th
2009
12:40 AM
I see Lupron as a necessary evil. I am waiting for surgery in 2 weeks and Lupron has stopped me from menstruating which is a good thing. That is about the only good thing about Lupron. I haven't gained the weight people are talking about but am working out a lot. My symptoms are some night sweats but the dizziness, increased blood pressure and blood sugar and general achiness are the worst part of it. I also get headaches that come and go more after an injection; I have had three - one each month. Thankfully, I had my last one this week. This drug causes your body to try to speed up since it is depressing some of its functions which apparently is the cause of the high blood pressure. If there are any possible alternatives, I would go with that rather than lupron. I have run out of other medical options so only had Lupron until my hysterectomy.
-- By johnsrude55 | Reply | Private Message me
December 21th
2008
9:34 AM
In addition to the rather common occurrence of the sweats, I have gained 30+ pounds since commencing a Lupron intermittent protocol. The majority of the weight gain has manifested itself in my stomach. My appetite has not increased or if so, not significantly. I exercise regularly and in most cases, aggressive exercises. I have carefully monitored my diet and have been unable to shed any weight or stomach mass.
-- By dennisy | Reply | (3) replies | Private Message me
November 24th
2008
9:12 PM
Much of the same, but honestly, not too bad. Hot flashes started one month after the first shot (2 shots/6 mo. treatment), almost to the day. They are tedious but not unbearable. Joint and bone pain, hot flashes, night sweats. I'm now one month past the 6 months, I still have hot flashes and am having a lot of knee pain and some in my left hip.
I gained 20 lbs despite good exercise habits.
But definitely not the horror-stories posted below, I was lucky.
-- By jayvee11 | Reply | Private Message me
October 3th
2008
4:38 PM
I have been on Lupron for a week now, and am having night sweats, but nothing else. I may be a little cranky, but I am chalking that up to the stress of the whole IVF situation.
-- By emyllie | Reply | Private Message me
September 15th
2008
12:41 AM
In the past five years I've gone through two six month Lupron treatments. The first Lupron treatment was given without a Laparoscopy. After being told for ten years that I was one of the unlucky few who have "bad periods", I finally found a doctor who would listen. She diagnosed Endometriosis after I listed my symptoms and put me on a Lupron treatment plan. I had one one-month injection and two three-month injections. Most of my side effects were tolerable; weight loss (almost sixty pounds but I was over weight to begin with), hot flashes, night sweats and memory loss. However, I experienced horrible back and hip pain...to the point of following up with a pain management doctor who insisted there was no reason for me to be in pain.
About four years later I found a really great doctor who performed a laparoscopy to diagnose my endo. She removed fibroid tissue from both ovaries and my colon. My next period was just a horrible so she suggested we follow up with another Lupron cycle. I expressed my concerns with the pain I experienced the first time and she suggested I have add-back therapy. She prescribed a regimen of Estradiol and Norethindrone along with six monthly Lupron injections. The side effects were worse this time around. My depression kicked into overdrive, I was constantly struggling to keep my anger in check, I would wake up dripping from night sweats, hot flashes were bad, blurred vision, memory loss, insomnia and the pain in my back and hips was excruciating. She prescribed Celebrex for my back and hip pain, which didn't help too much. I have a three year old son and had to use a wheel chair when we went to the museum because being on my feet for more than fifteen minutes was impossible.
I've now been off the Lupron for about six months and I have yet to regain any sort of short term memory. My vision is much worse than before I started the second cycle and has yet to reverse. My depression is still bad, as well as anxiety and irritability. However, as soon as the last month of Lupron started to wear off, my back pain did dissipate. I'm still having trouble sleeping but have found solace in Ambien...which could be a bad thing. I don't want to depend on chemicals to help me sleep at night. I just had my yearly exam with my doctor and she apologized for all the pain I experienced. She told me that in all the years she's given Lupron treatments, she had never seen a patient in as much pain as I was in. I don't think I'll be undergoing the Lupron treatments again in the future. I'm currently starting Yaz as a way to keep my periods at bay and only have three or four a year. I'm not real sure if that's a good thing either but we'll see. I have sympathy for all the other Lupron patients out there who experience the bad side of the drug. I don't understand how a medication such as this, which has such drastic side effects, can be marketed to people who are already suffering from pain in the first place.
-- By jackie_vandyke | Reply | (3) replies | Private Message me
July 28th
2008
3:09 PM
I just went to the Dr. for my second Lupron injection and to get some help with the side effects. Menopausal/emotional me, started crying!!! Gawd! I went in with my list of side effects from the last 3 months (and it was long!) and wondered what was worse, the pain of endometriosis or the life changing side effects of Lupron. My Dr. is wonderful and spent an hour with me; he decided to put me on Provera (progesterone or add-back therapy) for a week to see if the side effects improve. If they do, I get my second dose of Lupron in a week. If not, we stop it all and let my body slowly try to get back to normal (although I have never known what "normal" is since endometriosis) and see how the "therapy" worked. He is strongly encouraging me to follow through with the 6 month course as that is the recommended length of time for the best results. I'm 5'8" and have lost 10 lbs. in the last three months, I'm down to 107 lbs. He told me to try and eat more if I could (although my nausea is constant 24hrs. a day) and make sure to take a daily vitamin and calcium for bone loss. He said that he has never heard of blurred vision to be a side effect of Lupron, "But every woman is effected differently." I'm really hoping the Provera works - any kind of relief is better than this! I'm still having 3-4 hotflashes every hour with extreme exhaustion/fatigue, night sweats, daily migraine headaches, nausea 24hrs. a day, life changing mood swings, and shaky hands. He kept reminding me that this only 6 months out of my life - it's not forever ... forever feels like an awful long time when you can barely get out of bed!
-- By tweetyrmj | Reply | (5) replies | Private Message me
July 15th
2008
7:13 PM
I was diagnosed with endometriosis in 2007. I had the surgery, and then started the shots. I suffered depression during my 6 months of the Lupron shots. Not too bad, but I didn't feel like myself. Kind of emotionless. I had no motivation to do anything. I have no history of depression. When I got off the shots, it got worse. I had terrible panic attacks to the point where I felt paralyzed. It was awful! My Doctor never told me that it was a possible side effect of the shots and the progesterone pills I was on. I found that out when I started researching myself. I am now seeing a counselor, because it was really scary to feel that way. I am doing much better, but I will never take Lupron again. I found out that going from no hormones at all (on Lupron) to all of a sudden having a period again can really screw with you. It can cause a chemical imbalance. While I was on Lupron, I also had headaches, terrible hot flashes, night sweats, achne, and gained about 18 pounds....not fun! Good luck to all of you taking this medication. Just keep a good relationship with your doctor. I went in to this with no information. If I would have been more informed, the outcome could have been different for me.
-- By lindsey23 | Reply | (1) replies | Private Message me
June 27th
2008
9:53 PM
I got my shot in Oct after 30 days of extremely heavy bleeding almost resulting in a blood transfusion. I got my shot in Nov. Still no period 9 months later. My doctor is telling me that it stays in people's systems for different period of time. I went through the night sweats and mood swings and now finally weight gain but NOOOO period. I'm 39, I hope I never get it again.
-- By haglerbe | Reply | Private Message me
June 16th
2008
6:26 PM
I am 30 years old and have been put on Depo Lupron after a laproscopy to help with endometriosis. I am 2 months into a 6 month course (one shot every 3 months) of Depo Lupron and my life has drastically changed. I started feeling life altering hot flashes and night sweats two days after the first shot and nearly drown myself in sweat 24 hours a day. I experienced a little postpardum depression after giving birth 6 years ago but have found myself sunk into a sinking hole of depression and anger like I've never felt before. I bawl at McDonald's commercials and become enraged if the dishwasher isn't loaded properly! I am ecstatic one minute and severely depressed the next. I have even had thought of suicide since being on this shot. I am normally a very outgoing, athletic, cheerful, happy person - but since taking this shot, I have become a stanger in my own head. I tell my family all the time that I need to "go stick my head in the freezer" to cool off because of the horrific hot flashes. I have to carry a handheld fan with me 24 hours a day and sleep with ice packs to keep cool. Since the shot started 2 months ago, I have lost all sexual drive, am thoroughly exhausted by 9am and find myself crying at my desk at work by late afternoon because I am so tired. My family thinks I am going crazy and I've never fought more with my husband. My daughter has gone to grandma's for awhile because I'm just so tired and irritable that I feel like an awful mother. Migraines have also come full circle since the onset of the shot as well as blurred vision and shaky hands. I'm a little achy throughout the as well. I know that everyone responds to medication differently, but I'm finding a lot of people with the same side effects as myself and have to wonder why the doctors don't warn patients about these types of problems before prescribing medications such as Depo Lupron. I don't think I'll be going back for the second shot. Could it get any worse?
-- By rmjtweety | Reply | (10) replies | Private Message me
June 5th
2008
1:29 AM
I WAS GIVEN MY FIRST THREE MONTH INJECTION IN JANUARY, SO IT WAS SUPPOSED TO END IN MARCH, SO FAR THIS AWFUL SHOT SEEMS TO BE IN MY SYSTEM STILL!! NOT ONLY DO I STILL GET NIGHT SWEATS, I HAVE MAJOR JOINT PAIN, FATIGUE, MEMORY LOSS AND STILL NO PERIOD (ALONG WITH OTHER SIDE EFFECTS, TOO LONG TO LIST!)!! MY MAIN REASON FOR THIS POST, IS TO ASK IF ANYONE KNOWS HOW LONG IT TAKE TO GET YOUR PERIOD BACK?? NOT THAT I AM LOOKING FORWARD TO IT, BUT I AM JUST CONCERNED, BECAUSE I HAVE NOT HAD ONE IN 2 1/2 MONTHS!! ANY REPLIES WOULD BE GREATLY APPRECIATED!!
-- By laurnadunne | Reply | (2) replies | Private Message me
June 3th
2008
11:47 AM
I was prescribed Lupron for my first IVF cycle. I have given myself 5 shots of 10 units so far. The last three nights I had night sweats and a little bit of insomnia but nothing that was unbearable. I just took the blankets off and went back to sleep. I think the people who take Lupron for endometriosis take a much higher dose. I don't think IVF candidates should be scared off by Lupron. So far so good!
-- By fairmount | Reply | (1) replies | Private Message me
April 1th
2008
6:50 PM
I was diagnosed with endometriosis about 4-5 years ago. I had a laparoscopy done and was told if I got pregnant that the endometriosis would be cured. I now have a 16 month old son (who I adore). Anyways, it took us about 2.5-3 years to get pregnant. In December I went to another doctor who told me to start Lupron shots for the endo. He put me on 6 doses of monthly shots. I was told that it should get me by long enough to have another kid. The side effects haven’t been back. The worse one is night sweats. I hate those. My problem now, I am in the middle of the 4th month and I am having severe cramps….no spotting or bleeding, just bad bad cramps. I called the doctor and he put me on Hydrocodone for pain. Any suggestions? Has this happened to anyone?? I’m hoping to have another child but feel that my window is closed and he will want to do a hysterectomy next. HELP!!
-- By smo0919 | Reply | Private Message me
March 30th
2008
9:27 PM
I am a 43 year old women with 2 children. After my second child I started having problems with infections and pain during sexual intercourse After 5 years and 3 doctors I was diagnosed with endometriosis. I had surgery and still had some discomfort so my doctor suggested the Lupron shots. I was very concerned about the side effects. I talked to my husband and prayed about it a lot and decided to go with the injections. I just had my last of 6 Lupron injections the other day. I have experienced most of the side effects such as fatigue, mood swings, joint pain, lack of desire for sex and night sweats but have handled it pretty well. I was very concerned about the weight gain so I started a pretty intense exercise schedule (work out everyday) I have lost 5 pounds and feel the exercise helps with the fatigue. Even though I did experience the side affects due to the fact that I did not take my add back therapy like I should have I feel so much better than before I started the Lupron injections.
-- By rmhitch | Reply | Private Message me
March 28th
2008
11:16 AM
I am 50 years old...nearly bled to death from fibroids and became anemic. I had extremely heavy periods and had to receive a transfusion of 2 units of blood when my blood count went down to 7. My options were 1) Do
nothing...2) Take 6 months of Lupron to hopefully bump me into menopause....3) Fibroid embellization...4) Hysterectomy. I am trying to avoid a hysterectomy....and needed time to get my blood count up before any other procedure. I have had some of the side affects...hot flashes, mood swings, night sweats,.....but I had them before because I was pre-menapausal anyway so there is really no difference. Have not noticed any weight gain and I get my 3rd shot today. Everyone's body is different...for now Lupron has been a life saver for me.
March 16th
2008
5:30 PM
I am a 68 year old male with prostate cancer that has spread. My first Lupron shot kept the PSA down for more than a year, but the effects were so terrible I refused more until a bone scan showed my cancer had spread all over and my PSA went thru the roof. With 2nd and subsequent shots my doctor had me take Casodex pills for 10 days and drink soy milk to kept down hot flashes and night sweats (yes, men can have them too). With this regimen I have had absolutely no side effects. I also now take soy pills instead of drinking the milk.
Not sure about Casodex for women (I had pills left over from prostate cancer treatment) so check with your doctor. But soy pills are designed for post-menopausal women and sold at drug stores.
-- By bobinnva | Reply | Private Message me
March 2th
2008
7:17 PM
hi I'm 28 yrs old and have been diagnosed with endo. i have been taking the Lupron shot since August 07. I'm only suppose to be on them for a year. 2 weeks after my 1st shot, i started getting severe headaches w/ nosebleeds. also, I'm so exhausted all the time. after my 2nd shot i started passing out with severe headaches. i told my doc about it and she took me off the shot til i got a cat scan which came out normal. at the beginning of February 08, i was back in the er room 3x in a matter of 48 hours, thats when an ob/gyn at the hos. gave me another shot of Lupron. since i got this 3rd shot, i started having severe migraines and passing out again along with extreme exhaustion. I'm very angry my doc won't do the hysterectomy. she says, I'm too young. but the shot sends u into perimenopause, whats the difference. i was taking the hormones as well before my doctor took me off the shot but they made me really, really angry all the time. when the doc at the hos. gave me the shot, she didn't put me back on the hormones. this shot is suppose to help me but instead its ruining my life. i have severe headaches and exhaustion with the shot and severe pain without the shot. i don't know what to do. I'm not suppose to have any pain after i get off the shot for up to like months or years i was told. the shot started to where off at the end of January and i had to get it again in February when i was originally suppose to take my 3rd shot. i still have pain in my stomach, it just makes it tolerable. my other side effects r: mood swings, hot flashes, night sweats, no sex drive, extreme nausea, depression, stomach pains, swelling in my stomach, weight gain, and of course severe headaches. this is effecting my life so much. i do not recommend getting the depro lupron shot to anyone. of course everyone is different, but if the shot effects u like this, i recommend u not taking it. i will not be taking my next 1. i will be calling my doc 1st thing tomorrow morning cuz i passed out Friday with my 6 year old daughter here and no one else. i have been so afraid of this happening with my kids here and it has happened. as a mother u don't want your children to have to go thru something like that without no one else around. has anyone else had these side effects? i can live with most of them, but i can't live with the extreme exhaustion and severe headaches with passing out. thank u for listening.
-- By mtigerangel70 | Reply | (6) replies | Private Message me
February 22th
2008
6:46 PM
I am 46 and was on Lupron from May to November 2007. I still have hot flashes and night sweats, my bones ache all the time and I feel like an old person of the morning just trying to get out of bed. I have no sex drive and feel bad all the time. Now my doctor has to me I am post menopause. I don't know if the shots caused this or not.
-- By sherry258 | Reply | Private Message me
February 6th
2008
12:22 PM
I have taken Lupron injections for almost a week now. Me, and my husband are focusing on the end result...the baby. I am different than usual(as far as mood swings), but it is comforting to know that it will change here soon. It's also helpful to read other's issues with the drug, so I know I a not the only one.
Yesterday, my girlfriend came over to visit...I was crying uncontrollably....which I never do that! I also get VERY snappy with people..especially my husband. I am mad so much more and more intensely
January 19th
2008
8:37 PM
I started IVF and Lupron was my first injection I had to take along with birth control pills. I feel like I've experienced every side effect possible and it is making me crazy! My vision is blurred, I can't even focus long enough to read a book. Migraines, night sweats, hot flashes and I feel on edge all the time like I may freak out at any moment. Very moody thank goodness only ten more days!
-- By heatherblackmon1 | Reply | (1) replies | Private Message me
January 1th
2008
2:57 PM
55 year old male and used to be in excellent condition. I had radiation and Lupron Depot injections for prostate cancer and even though my PSA is down to .032, the hot flashes, joint pain, weakness, weight gain and atrial fibrillation caused by Lupron sucks. Now I am on medication for the a fib and it's really horrible.
-- By nyabdns | Reply | (1) replies | Private Message me
December 13th
2007
8:10 PM
Hi All,
Just wanted to share a positive Lupron experience. I began Lupron in Dec 2005 and ended in Jan 2007. I took monthly Lupron shots for a year straight. However, my Dr. prescribed an add back drug called Norethindrone which I took once daily the entire time I was on Lupron. The only side effect I had was about a 10 pound weight gain. When I asked my doctor if this was from the Lupron he said maybe 3 or 4 pounds of it. I was eating right and exercising during this time period but was still gaining weight. About a month after I came off Lupron I began losing weight and was able to fit into my old clothes a few months later. I am sure it was the Lupron that caused me to gain weight.
If you are taking Lupron without any add back drug, this seems when all of the other horrible side effects come into play. Just wondering if anyone had a really bad experience even while taking the add back drug.
November 30th
2007
6:08 PM
I have been on Lupron Depot for a year and a half, and it has been terrible. I am a stage 3 endometriosis patient; I was diagnosed last year on my first day of school. They did a laparoscopy, D&C, and cystoscopy. I have experienced nausea, weight gain, mood swings, paranoia, night sweats, hot flashes, dizziness and have had to be hauled out of school in a wheelchair on many occasions. This is all while on Lupron Depot. It has barely taken my pain away, but I will say that at first it worked amazingly. I don't know if my system is just immune to it now, or what. I had to leave school today because of chest pain and my pulse was 111 bpm. Before I started Lupron, I was told that I "may experience some mild hot flashes at first, if anything." The hot flashes are absolutely brutal. I went from being a straight A student to barely scraping by, trying to get weeks of makeup work done. I have always been a sane, calm person, but when i went on Lupron, after about a month also had to go on Prozac because I was so incredibly paranoid and mood-swingy. I also went from a size 2 to a size 7 in about 2 months! I exercise regularly, I ride my horse everyday, and I eat right. I've always been in shape, but Lupron made me gain so much weight!!! I wouldn't recommend Lupron, but I don't really see what other choice there is, since they have already tried the pill and that stopped working after about a month. I'm so frustrated, and I can't take it anymore! Menopause and pain from endo are making me miss my life. I can never go out, I always have to call in to work, and I haven't been in school consistently for about a month.
To anyone considering going on Lupron Depot, I would think long and hard about whether you are ready to deal with the side effects of Lupron.
-- By joiedevie128 | Reply | Private Message me
November 27th
2007
2:21 AM
PLEASE READ BEFORE TAKING LUPRON DEPOT:
Hey there, I just thought I would add my experiences with the drug for everyone. I am a 25 year old with stage IV endo. I have already done a Laparoscopy and removed some of my endo. Started the Lupron on a six month treatment. My doctor said I would probably lose my period in a couple of months... well, I was due for my period two weeks after first shot and I didn't get it. I didn't have a period from then on.
This drug is great for only one thing: pain removal. It's been great for this aspect. I was in SO much pain that it was unbearable, but the Lupron Depot shots REALLY helped with this. No pain whatsoever.
HOWEVER:
Side effects: Wow...these are extreme!
WEIGHT GAIN:
Now, I am a very healthy person. I was a college cheerleader and in shape. I eat well and exercise very regularly. This did not help one bit after taking the shots! Within six months I have put on 30 pounds!!! And this is even though I am still exercising more than ever and eating amazingly! It just doesn't seem to matter.
HOT FLASHES:
My hot flashes are severe. I carry a fan with me everywhere I go--and use it all the time. They can come on me so sudden. Sometimes they are based on emotions (e.g. if I get nervous or excited or sad...they come on really strong).
NIGHT SWEATS:
Um, yeah...it's gross. I keep a fan on my face, the window open, barely any clothes on, no covers...and I still sweat!!!!!
INSOMNIA:
I have not had too many good night sleeps since I started the shots. I will say though that as long as I am kept cool through the night then I have a better chance of sleeping well
NAUSEA:
It's strange, but I never get nauseous...not even from motion sickness, but I have been starting on the last shot of the treatment. It was so bad that I would throw up!
One last thing, I tend to have a messed up equilibrium a bit. Seriously, I find myself walking crooked all the time!
On a whole the best I can say is that this drug makes you feel like it's not really your body. I kind of feel like my body has the flu or something.....it just feels weird and strange all the time. You can tell your body is all screwed up.
Other than that I haven't had anything else.
This drug is GREAT for pain removal and it's also nice to not deal with a period for a while, but the other side effects are so horrible that I would rather deal with the pain.
I just pray that the weight I gained will come off after the estrogen returns to my body....
-- By sunshinekiddles | Reply | (1) replies | Private Message me
October 22th
2007
9:28 PM
I am on my third moth of the Lupron shot! I was basically three choices as to how to take care of my severe Endo and severe Anemia caused by the Edno those three choices were 1. Do nothing and eventually bleed to death.
2. Take Lupron and 3. Have a Hysterectomy! Okay I am 27 years old and bleeding to death from a period is not an option I was even willing to ponder (what idiots for giving me such an option), having a hysterectomy was something I thought about but then after doing much research I decided No and I did research Lupron and although I read horrible things I felt that was really my only option to some hope of relief and I also thought, I am a big girl I can deal! Well I am dealing, I have not experienced a hot flash but I do have night sweats, headaches and feel sick to my stomach on a daily basis! The side effect that I really am suffering from is total hair loss. I mean I have hair on my head but I use to have the thickest hair and get so many compliments on it and now when I brush it, wash it, run my fingers through it or just put it up I literally will have a hand or brush full of hair. My hair was so thick I could not get it into a barette and I would have to use those think hair ties sometimes two hair ties and now I can use a kid hair tie and tye it once! Me and my baby niece who is 16 months old share hair tyes! I have done more research on Lupron since starting it and although I have not experienced many of the side effects listed that you could suffer a red flag went off when I read, it does not cure Endometriosis and there is really no cure, just pain management and so I am at the point where I believe I am going to stop and find alternatives myself and if that means going to GYNO after GYNO then so be it. The side effects I have suffered from are minimal however if the pain is going to return after I stop Lupron then why go through the pain of side effects? This is soley my opinion and I am posting to get it the madness of my chest that I allowed my Doctor the guy I pay take control of my health! I am now taking that control back.
October 11th
2007
10:30 AM
I am reading these posts and see a horrible pattern of doctors not informing their patients of the possible side effects of this product. I, too, was informed by my doctor that the side effects we minimal. HA! The mood swings are brutal and the night sweats/hot flashes are almost hourly! I've also had localized chest pain beyond my left breast (like a muscle pull) since about a week after receiving the shot. I will be having an endometrial ablation in 2 weeks and this dose of Lupron will have worn off by the beginning of December and I can't wait!
-- By lulu11463 | Reply | (2) replies | Private Message me
September 26th
2007
3:25 PM
I am 17, soon to be 18, and have suffered from this horrible pain over my right ovary (basic area) for near 5 years now. I have missed my whole high school years, ended up being home schooled from the pain and graduating early. I FINALLY have a job that I love, but I'm afraid I won't be able to last. I go in to work with pain, get fevers because of either the pain or inflammation. I have had 2 laps, the first one showed nothing (I also, in 8th grade when all this started, had a 5.5cm cyst on my right ovary), the second showed endo on my right ovarian ligament. I have tired almost every birth control out there, and all they do is make me 10 times worse (odd, but true). Now this new doc wants me on Lupron. After all I have read, I'm scared to take it. I'm supposed to take it Friday. The bad thing is, I already have an auto immune glitch (we believe, every problem I have is linked to auto immune), I don't want to be worse. Recently I was on DEPO, which is horrible (seriously, don't take it you gain so much weight and it is so hard to get off, you bleed for like a month or more after you stop... it's awful). Every time I get this pain I bleed 10 min later, badly. I just want this gone, but I don't want any other problems too occur. If anyone has any links that specifically list the side effects of lupron or anything else that might help me, I would love it.
-- By jazz1020 | Reply | (1) replies | Private Message me
August 20th
2007
6:43 PM
I just took my 5th shot last week. The hot flashes are terrible some days and hardly noticeable others. Some times I just want to scream in anger for no reason. I feel like I'm hypersensitive to everything. I don't want to cry, I just want to lash out in anger. I've got one dose after this and am praying that it will have been worth it to have some relief from the endometriosis.
-- By rosanna72 | Reply | (3) replies | Private Message me
April 17th
2007
6:57 PM
SIX MONTHS OF LUPRON AND I AM AFRAID A LIFETIME OF MISERY. I HAVE BEEN OFF THE POISIONOUS DRUG NOW FOR 3 MONTHS AND STILL HAVING NO RELIEF OF THE ACHES AND PAINS IN MY BODY AND MY MAIN PROBLEM THE 35 LBS OF FLAB THAT IS HANGING ON ME NOW THAT JUST WONT GO AWAY. I DONT HAVE THE NIGHT SWEATS OR HOT FLASHES MUCH ANYMORE I DO STILL HAVE SLEEPLESS NIGHTS AND BOUTS OF DEPRESSION. I JUST WANT THE OLD ME BACK. SOMEBODY TELL ME THAT THERE IS SOME HOPE THAT MY BODY WILL RESTORE ITSELF TO NORMAL. HOW LONG DO I HAVE TO WAIT FOR MY WEIGHT TO BE NORMAL AGAIN OR WILL I HAVE TO SUFFER WITH THIS FOREVER? MY SHOULDERS AND HIPS BOTH ACHE ALL THE TIME THIS DRUG IS AWFUL AND I AM SO ANGRY WITH MY MONEY HUNGREY DOCTOR WHO MADE OVER $3000.00 FOR MY PAIN. TO ALL OF YOU CONSIDERING THIS DRUG IT IS MY EXPERIENCE AND OPINION NOT TO DO IT, YOU WILL REGRET IT MOST LIKELY. JUST DO YOUR RESEARCH DON T BE A FOOL LIKE I WAS. I THOUGHT WELL DOCTOR KNOWS BEST THAT IS A TOTALLY WRONG. GOD BLESS AND HANG IN THERE EVERYONE. THAT IS ALL WE CAN DO I GUESS. THIS DRUG SHOULD BE BANNED.
KELLY
March 23th
2007
6:43 PM
I underwent prostate cancer IMRT radiation in 2005. As part of the treatment, I was given three four month doses of Lupron Depot. Men who get this drug experience a reduction of testosterone, wright gain, hot flashes, and sometime depression. I had all of those.
Toward the end of 2005, about two months after my last injection, I noticed a tingling, sometimes burning sensation in my right fool near the toes. Over the past year or so, the sensation has spread to my other foot and sometimes up my leg.
My symptoms have all the earmarks of peripheral neuropathy. So far, my motor functions are okay, and I have been checked for diabetes, and found not to have it, which is a relief.
I did have an attack of Bell's Palsy back in 1973, and it was treated with heat and cortisone. It never came back. I see from some of the web sites that there is a connection between Bell's Palsy and peripheral neuropathy, and and also a connection with Lupron and peripheral neuropathy.
I realize there is little I can do about it, but I think the physicians who prescribe Lupron for prostate cancer should also make their patients aware of this possible side effect.
-- By nelchael | Reply | (3) replies | Private Message me
March 20th
2007
10:25 AM
Sucess Story:
I am a 38 yo female, I have severe endo, I had a bowel re-section because it ate through a portion of my small intestine. I just received my 6th shot today, and my doctor and I agreed that I am going to start the regiment over next month. (another 6 mths)
I have actually had an okay experience with Lupron. I have had hot flashes, night sweats, moodiness, and bone/joint pain and headaches. These symptoms seem to occur more toward the end of the month within a week or so of getting my next shot.
The symptoms are not fun, but neither are they unbearable. I have a good quality of life and the symptoms do not interrupt that in any way.
Additionally, sorry if this is TMI, but I have had no drop in my sex drive/urges, things just take a little longer to get going. My partner understands this and is most supportive.
Every day I take:
Multi-vitamin
Calcium/Magnesium supplement: 1000 mg Calcium/667 mg Mag
Omega 3 Fish Oil: 1000 mg
Vitamin B12: 100 mcg
I drink quite a bit of soy milk also
Good luck to those of you who are either on it, or considering it. My empathy to those who are having a horrific time with it.
-- By taraljohnson | Reply | Private Message me
November 2th
2009
10:50 PM
I am suppose to get my fourth shot tomorrow!!I have been experiencing a lot of I am get hot flashes,vaginal dryness really bad, increased appetite,night sweats,and weight gain,last one that has been horrible to deal with is my severe headaches.I am 24 years old and mom of 3 children.We wanted to have the option open if we did decide to have another child.I am still having the cramping to the point that I can not be the mom I want to be.I really don't know what I should do.Now reading all these messages I am very scared.Any one with comments please feel free!!
-- By mykids3 | Reply | Private Message me