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 | (3) replies | Send Private Mail
July 26th
2008
7:38 PM
I'm on my second series of the lupron shot, I am also a very young age of 17 years old tying to conquer endo and it's symptoms.... At age 13 I received my first laparoscopy and have been on birth control since "becoming a woman". I have terrible cramps and creeping lower back pain that makes me feel weak and exhausted all the time. I should be full of energy,but i just have terrible mood swings, lost love interest, severe mood swing, extreme hot flashes, memory loss, I've lost so much weight ..... I have lost from 125 lbs to 111lbs in maybe a month. I get very sick to my stomach and vomit when something doesn't appease me such as the smells of certain things, room temperatures, or even if someone around me is smoking. Lupron does take care of my extreme menstrual pains i did have, but sometimes i just wake up to dread the day.... It just feels like anything can make me feel upset and empty on the inside, no one wants to feel like that. From April 08- July 08
-- By kristinw18 | Reply | (2) replies | Send Private Mail
July 22th
2008
2:45 PM
I have had endo for about 9 years now. 6 surgeries later, I decide to try the Lupron Shot. I took the 3 month dose twice. I did not experience any side effects until the 2nd month, which included hot flashes, mood swings, sleepiness, no interest in sex, weight gain, horrible headaches, loss of memory, pains in all my bones, breast tenderness, blured vision and so on. I am now off the shot after being on it for 6 months, and I am worse now then I was then. My pain is back from the Endo, my stomach feels like there is a huge ball in it, I have extremes of sever diarrhea to constipation. I feel like Im going to throw up every other hour..sometimes I do. My bones hurt worse than ever. I still have no memory and I cannot concentrate very well. My Dr. will not allow me to have a hyst because he feels I am to young. I am 27 married with a child..how much older do I have to be to get some relief? So, yes I liked Lupron, it did help. but I would rather get this crap taken out than go through all of this again.
-- By ferby143 | Reply | (1) replies | Send Private Mail
June 30th
2008
10:42 PM
I discovered I had endometriosis in March 2000 at which time I had surgery to remove what was there, then the gyn followed up with the Depo-Lupron shots for six months. To help with the hot flashes, mood swings etc. My doctor put me on a very low dose of Estrogen which helped. I was having fertility issues before this and when I finished up the shots and the time had ran out and still had no period, my doctor put me on fertility drugs to give my body a jump start, and in April 2001 we found out we were pregnant, during which time my teeth started deteriating and by the time I have my second and last child in March 2003, I had to have major dental work done. I blame the lupron shot for this issue, apparently my calcium level dropped. I told my gyn about it and he said he had never heard of any such thing before as a side affect of the drug. I pretty muched laughed in his face and told him to advise future patients to increase the calcium while on the drug. Then recently I discovered like a lot of you that there are some really serious side affects from Lupron. Since this after having my last child I went on the Depo Prevera shot for 6 months, gained unsightly weight, so I got off of that and got my tubes tied in 2004, then by March of 2006 I knew my endometriosis was back full fledge and in June 2006 I had to have a hysterectomy. My only long term affects from the Lupron and Prevera shots is still trying to lose some of the weight and living in pain during every meal but due to the extreme affect it took on my teeth, I can not afford even with insurance to get all the work needed done!!!! If I had to do it over again, I would have had the surgery and then worked on getting pregnant immediately, because long term..... It isnt worth the "preventative" HaHaHa!!!!
-- By ane0103 | Reply | Send Private Mail
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 | Send Private Mail
June 27th
2008
12:42 AM
I ONLY HAD ONE INJECTION AND THE SIDE EFFECTS WERE HORRIBLE. I HAVE A 2 YEAR OLD LIL BOY WHO IS WONDERFUL. WHEN HE WAS A YEAR AND A HALF I WENT TO THE HOSPITAL FOR SEVERE BLEEDING AND FOUND OUT THAT I HAD BEEN PREGNANT AND WAS HAVING A MISCARRIAGE. THEN 6 MONTHS LATER I HAD AN IRREGULAR PERIOD WHICH HAD NEVER HAPPENED BEFORE. I HAD ONE AND THEN TWO WEEKS LATER HAD ANOTHER AND IT WAS VERY PAINFUL. I WENT TO SEE MY GYN AND HE DID A VAGINAL ULTRASOUND AND TOLD ME I HAD A CYST THE SIZE OF A GOLF BALL ON MY LEFT OVARY. HE PUT ME OF A HIGH DOSE OF BIRTH CONTROL TO DISSOLVE IT. TWO WEEKS LATER I HAD TO GO BACK TO THE DR BC I WAS STILL IN A LOT OF PAIN. THE DR THEN TOLD ME HE WAS GONNA DO A LAPROSCOPE. WHEN I CAME OUT OF SURGERY THEY HAD INFORMED ME THAT I HAD ENOMETRIOSIS AND THAT MY BLADDER WAS STUCK TO MY UTERUS AND MY UTERUS WAS STUCK TO MY ABDOMINAL WALL. I ALSO HAD THE ENOMETRIOSIS ALL OVER MY OVARIES, UTERUS, AND BLADDER. IT WAS VERY PAINFUL. MY DR SUGGESTED THAT I TAKE A 6 MONTH TREATMENT OF LUPRON. SO I DECIDED TO GIVE IT A TRY. I TOOK ONLY ONE INJECTION AND THE SIDE EFFECTS WERE HORRIBLE. I HAD MOOD SWINGS, HOT FLASHES, STOMACH PAIN, CRAMPS, FATIGUE, TIREDNESS, JOINT PAIN, SWELLING, WEIGHT GAIN ETC... I CALLED MY DR AND HE PRESCRIBED A HORMONE PILL WHICH DID NOTHING. SO I DECIDED NOT TO TAKE ANYMORE INJECTIONS. THAT WAS ALMOST 3 MONTHS AGO. I AM STILL IN SEVERE PAIN SOMETIMES IT IS HARD TO GET OUT OF BED (WHICH I HAVE TO GET UP EARLY EVERY MORNING I HAVE A 2 YEAR OLD). I STILL HAVEN'T HAD A PERIOD AND IM EXTREMELY RESTLESS AT NIGHT I AM TIRED BUT CANT SLEEP. DOES ANYONE KNOW WHEN I SHOULD EXPECT A PERIOD??
-- By pann | Reply | Send Private Mail
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 | (5) replies | Send Private Mail
May 18th
2008
1:32 PM
I have been on Lupron for not even a month yet. My side effects are bad headaches, the pain has not gone away, I am still having my period, I have terrible mood swings, I have trouble sleeping, I have no sex drive at all, (my husband hates that) I get shortness of breath sometimes. I get hot flashes, they don't really last long, but when they hit, they hit. I get stomach aches and nausea sometimes. I think the worst thing about me is that I am in the Army. One doctor that I was seeing did a sonogram, a CT scan(i think), and put me on birth control pills, but none of that worked. She said there was nothing wrong with me and that I was making it all up. She said I needed to go to mental health. I finally got referred to OBGYN. The doctor there did a laproscopy, but let her tell it, she doesn't even know if I have endometriosis. She said I have a lot of scar tissue, but she can't say if it is endometriosis. Why are you treating me for endometriosis if you don't know for sure if I have it? The worst part of all is that I am supposed to be deploying to Iraq next month and I am still in pain. Yall please pray for me...
-- By armychick | Reply | Send Private Mail
April 10th
2008
9:02 PM
Well what more can be said really ? most all of us have suffered a great deal for a long time with going to a bunch of quack dr.'s listening to drug reps (Pushers) sell their dope and we all want to believe there is hope but there is none .these problems we have know one knows the actual cause so therefore there won't be a cure . sure there are a few success stories but for the majority these side effects are only the beginning I really don't want to bear children anymore due to i am afraid of what I put in my body and are my plumbing problems hereditary? I couldn't live with myself knowing that I passed on all theese problems to my child. I have been off lupron now for well I can't remember what year it was I think it was 2005or 2006 and I am still having issues.....................
Bone/Joint pain , MEMORY , G I problems , Weight gain , Depression , Tired all the time , Dizzyness , I can't walk straight , heart palpatations , upset stomach , impatient , the hair thinning has got better , but the dandreff hasn't , i'm irritable , moody , and my fave acne the night sweats went away after they gave me the northindrone it really helped and the prozac really helped with the sever mood swings . But I am not myself I haven't been in a long time . the worst side effect is a broken spirit. the con's FAR outweigh the pro's
pain killers and muscle relaxers with a laporoscopy with a briliant surgeon like a endocrinoligist not a plain GYN Along with a great diet and exercise and maybe throw some metformin in for kicks and that my friends is a great start . we do have alternitives . we just have to search for them sometimes .
-- By cin_dnj | Reply | Send Private Mail
April 10th
2008
2:05 PM
Hi: My doctor has suggested me lupron depot 3.75mg for three months before doing supracervical laparoscopy. I did ask the doctor about the side effects and she said that you might get hot flashes and mood swings. Thats all she said about the side effects. My first shot is on Tuesday April 15/08. After reading all these experiences i am so scared to take them and planning to talk to the doctor again and looking into the abdominal hystrectomy instead of supracervical laparoscopy. Do you guys think that because it is 3.75mg and not 7 or more mg it might not have that many side effects.
God, I am so confused now, please help me out here.
April 3th
2008
9:00 AM
Mood swings week following injections, slight hair loss, memory loss, headaches day of injection and couple days after, lack of concentration. Just had last (6th) injection about 11 days ago and started spotting about 5 days ago and cramping? Oh, also other major PMS symptoms, craving chocolate, salty things, very very irritable, and acne on chin area, neck, and shoulders? It caught me off guard a little considering I haven't had a period in almost 5 months. I assumed the Lupron would still be in my system? Called dr. and of course all they could say is "sometimes this happens and to wait till I come in for my follow up appt."? No explanation as to why? I was under the assumption that I wouldn't start AF or have these symptoms for another month or two. However, even with all of these side effects I have no pain, YET. I'm hoping for the best, also hoping I don't get divorced soon from all the moodiness!
-- By chiarani2 | Reply | (1) replies | Send Private Mail
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 | Send Private Mail
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 19th
2008
10:14 PM
I am taking Lupron as I had horrible endometriosis, two large-grapefruit sized tumors and several smaller implants removed. I lost my right ovary, and part of my left in the process. I am 28, newly married, otherwise healthy, and I want to have children, so I went on Lupron that my surgeon/OB suggested- monthly for six months. I read a lot of side effects and was TERRIFIED to go on it.
My own husband is an M.D. and I made him call different doctors in his hospital to see what they had to say...in a few days he called about 5 different OBs. Thankfully, they said that those that had side effects that were extremely severe was pretty rare. Still, I was scared.
I am now into my second month on Lupron and I have to say that the side effects aren't nearly as severe as I thought they would be. No hot flashes, no hair loss, no crazy depression, no anything else. I DO have fatigue, but it's manageable with coffee and extra sleep. I have some mood swings- mostly I feel more grumpy. The most noticeable and bothersome is the lack of sex drive and vaginal dryness. I also have trouble achieving "the big O."
Still, so far, very manageable. I'm not sure if it'll be worse if time goes on. But I feel like everything on the internet is really negative. I'm not discounting the tales of people who have had a bad time, but I wanted to put out there that it isn't always the worst thing in the world.
-- By suzannes | Reply | (2) replies | Send Private Mail
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 | (2) replies | Send Private Mail
February 11th
2008
6:26 PM
I was taking Lupron shot for severe endo and ando. The best 6 months of my life!! I was feeling so much better, no more Pepcid ac and Advil! I wasn't crutched over holding my stomach at work all the time....I no longer had to take off work for 7 days out the month, I wasn't in pain. I have hot flashes, but so what....it was worth it. I don't recall any mood swings, I'm more moody off the Lupron because I'm always in so much pain. Lupron worked for me. My options was the shot or a full hysterectomy. I will probably have the hysterectomy eventually, but right now, I'm trying to get my doctor to give me the shot again. I was reading and some of you have been on the shot for a year or longer....I was told I could only be on it for 6 months.
-- By msbgbg | Reply | (1) replies | Send Private Mail
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
December 11th
2007
4:50 PM
Hello Everyone,
First I would like to address those who had terrible reactions to the drug. My heart goes out to you and please don't be offended when I tell you this: Life is a risk and when it comes to science there are never guaranties. With anything you will have a side effect good or bad. You will be a Guinea pig no matter who you are or what drug you take, because everyone reacts differently. Some good and Some Bad.
Second, to those of you who are looking into this for a cure, sorry unfortunately like cancer this is a reoccurring disease. The drug is to help calm your system down and to give your body a rest. I would have to say Lupron saved my life. After all the years of pain and suffering, and hospital visits that occurred due to the severe pain. After having surgery to remove these areas and the doctor who recommended this drug to me was a life saver. I was on it for a year and was put on the NuvaRing afterwards and had mood swings and hot flashes, BUT Ladies...No PERIODS and NO MORE PAIN!! Yeah I gained a little weight, but that was water weight, you can go to your local health food store to buy herbal diuretics and exercise...excercise. I agree Lupron isn't for everyone, but either is another drug out there. You take a chance with any chemical you put in your body. It is HOPE that encourages us to try these medications. I have to say 10 years later I had a beautiful little boy and yes they say even pregnancy gives you relief, but unfortunately for me I had a C-section. Causing me more scar tissue and a reoccurred of severe endometriosis. Due to funds and no insurance I have had to be put on a sister drug called Depo-Provera. It is similar side effects, but ladies take my advice. Lupron isn't for everyone, but I think if you are a good candidate for the drug, try it. It might make a difference in your life...I pray it is positive!!
-- By colemanalaina23 | Reply | (1) replies | Send Private Mail
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 | Send Private Mail
November 16th
2007
9:37 PM
I took one injection of Lupron for fibroids in Nov. 2001. It totally changed my life, I am no longer the same person I was before. It started with severe migraine headaches for 14 days straight and attacks of nausea, lack of appetite. I used to have a strong stomach - now I was very easily nauseated. I never went for the second shot. I began to have panic attacks regularly (I had not had them for over 20 yrs). I was tired all the time, and a person who used to work out at the gym 5 days a week - eventually I quit. Now I just walk. I feel about 65 yrs old (I am just 49). I look old, my face began to droop, my hair thinned. I had bouts of depression coupled with general anxiety. My migraines worsened. My sex drive dropped to zero, I feel almost "sexless". I used to be confident, now I was afraid of everything. I now suffer from irritable bowel syndrome - with bouts of diarrhea, bloating and severe gas pains. I have trouble eating sometimes.. I have had all the tests and no one can find anything wrong with me,and none of the doctors think all these problems are due to Lupron. But, I know - I was NOT like this before Lupron. It ruined my life. I just wish my doctor would have informed me of all the terrible side effects - she only told me about hot flashes. I looked into suing her for malpractice but the lawyers said they could not build a case with no real medical evidence that my symptoms are caused by Lupron. I just wish I had known then what I know now. I tell everyone - NEVER take Lupron. Six years later and I still feel like this. Oh what I wouldn't give to have not taken that drug.
-- By kkraft | Reply | (3) replies | Send Private Mail
October 27th
2007
6:14 PM
I had the worst experience of my life. It has been very hard for everyone around me to understand what I have been going through physically and mentally. I read one of the other posts about feeling like the "hulk" when your mood swings come on and it is no joke. I've lost friends and my boyfriend of three years. I have been off Lupron now for a month and I still haven't regained any strength. I used to actively go to the gym 4-5 days a week, now I'm lucky if I can make it through a one hour session every month. This medication was also recommended highly by my doctor without a description of the side affects. It was the most miserable experience of my life. There are plenty of other treatments out there and I beg for you to try them first.
-- By nottheonlyone | Reply | (1) replies | Send Private Mail
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 | Send Private Mail
September 28th
2007
4:18 PM
It has been six weeks since I was given Lupron. My doctor did not inform me of all of the possible side effects. I don't think I would have taken it had I known of all of the possible side effects.
I was given it to shrink my fibroid and stop my heavy period that was causing me to be anemic. Since I have been on it I have one heavy period that last seven days and stopped...only to have it return two days later and last twelve days...so much for it stopping my period. Compare to some my other side effects have been mild...I think since I can't seem to remember much.Besides the memory loss I have had headaches, hot flashes mood swings, joint pains at night and there are times when I just feel confused unable to express myself.
My next shot is schedule for November...I not think that is going to happen
-- By bmarcelus | Reply | Send Private Mail
September 21th
2007
3:28 PM
I am a 33 year old female with two children. I was diagnosed with Endometriosis in Sept 2001, two months after my wedding. My doctor treated the best he could without hurting my chances of having children. After my family was finished he suggested Lupron. We had several meetings and much material before I deceied to take Lupron. I had a choice try the shot or have a hysterectomy. I choose the shot. I had a sever fall right before taking the shot and had major concusion. So when I went to the doctor with problem the lupron shot was over look and things going on blamed on my fall. However 11 months later I have found out different. I started Lupron in Oct 2006 and had hot flashes and some mood swings but it was well worth it not to be in pain 24/7 with the endo. However I was having headaches and joint pain but it was blamed on my fall.
I had memory problem at work that keep me from doing my job properly however it was blamed on my fall. I am sure the fall had something to do with it but I know the Lupron did also. Now 11 months later I am learning different.
I have a microadmea in my pitubitary gland, 3mm tumor. It is not cancer. However I have learned my shot is to blame. Granted this is in 1% of patients who take the drug. I have had major memory problems, depression, anxitoy, nervousness, hot flashes, cold sweats, major headaches, joint pain, general pain, hair loss, insomia, heart paputations, tacardia, lack of skin tanning, mood swings, endmea, tingling in hands and feet, gi problems, brusing easily, and many more things.
The lupron did what it said it would about my endo pain. It went away.
Now because of what was learning about my reactions to the drug and add back therpy my doctor took me off everything. It is horrible. It can take a long time for the side effect to go away from taking the drug but you have side effects from getting off the drugs too. I am getting a double dose and feel as though I am loosing my mind. My 4 year old asked me something three or four time and the last time she asked mom you need to do something with your head and get it together I am tired of telling you the same thing over. I hate my family is sufferieng. I will hae a hysterectomy in late Oct or early Nov, I am just waiting for the meds to get out where my system will be clear.
I am ready for my life to be back to normal. I am hoping the memory problems and pain will clear up soon however from my readings it could take some time. I want to be able to take care of my family again and know I did it well.
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 | Send Private Mail
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 30th
2007
1:36 PM
I have had 3 shots of Lupron - going for the 6 months of shots. I've had some hot flashes - mood swings and headaches. These side effects are consistent with menopause I'm told. Our bodies are being forced into menopause and the side effects we experience now - we'll experience in true menopause is what I'm guessing.
So no, not every person has a NIGHTMARE experience as you read on here. It's not great - but it's not terrible. The pain that prompted the need for Lupron shots (after my hysterectonmy last year, age 35) is gone.
Studies on the Lupron site will give you a better idea of what percentage of women experience the various side effects.
-- By markzgirl1 | Reply | (1) replies | Send Private Mail
March 27th
2007
7:42 PM
Lupron is terrible! I was given lupron after my lap which discovered endometriosis. I had my second injection last week. My pelvic pain is still here and now the Lupron side effects are killing me. I have insomnia, restlessness, bad mood swings, back hurts all the time, fatigue all the time, depression, headaches, and awful HOT FLASHES. I was not given other options but to take this poison. If I had done my research I would have said hell no to Lupron. It's all about the money...Dr's and pharmacy companies are making the big bucks while most of us suffer. Oh yes, and my blood pressure, which is normally low (110/60) is now up to 150/100. I'm not thinking this is too great for my health. And another sad thing is that the long term effects are not really known. I WILL NOT take another injection. I would rather take my regular endo pain over this in a heartbeat. Don't let them fool you.......Lupron is a VERY BAD thing. Anyone who is thinking about....do you research and think long and hard . Is it worth it? I don't think so...
Kelly
March 10th
2007
12:04 PM
I am 21 years old and have two children, I have been dealing with endo for about 3 years now, I have tried it all, I have used every type of birth controle there is out there, I have had 3 laprascopic surgeryies to try and remove it, I have tried hormone pills, a lupron nasal spray, and now the lupron shot, this is my last resort short of a hystorectomy.....the endo pain is truely unbearabel for me....but since getting the lupron shot I have had hot flashes, mood swings, bone and joint pain, migrains, night sweats, memory loss and a rash....I hardly can work because of the side effects and am on the verge of losing my job, mostly because I have so few "good" days since starting this shot about a month ago, my fianc'e and I argue alot now....mostly because he doesn't seem to be able to understand what I am going through.....if you are going to be put on any hormonale therapy please just make sure you do your research....I am also taking the add back therapy which seem to be of no help.....good luck...
-- By mommy422005 | Reply | Send Private Mail
January 15th
2007
6:35 PM
The first time I used Lupron was about 6 years ago for 8 LONG months. The hot flashes and mood swings were rough at first, but became unbearable towards the end. That, however, was the easy part. I experienced severe depression, and weight gain of about 40 pounds. It did help the endo pain like I could not believe, though.
After about 3 years, I had to go back on it, and at this time, I was engaged to my current husband. I had to warn him that I would be a psycho like he had never seen. It was even worse the 2nd time around. The joint and bone pain was/is unbearable. It has been three years since my last injection, and I still have osteoporosis, severe migraines, joint pain, and have gained a total of 80 POUNDS!!! I work out, eat right, but nothing will take this weight off. My thyroid has been permanently damaged. I am only 31 years old, and I have to make sure I don't fall or bump into anything because my bones could break!
Please, do your research. It DOES work for the endo, no question about that. I feel like a new woman in that area, but I feel like I'm 80 in every other way.
December 19th
2006
7:40 PM
I was diagnosed with endo in the spring of 2006. My Dr suggested getting the lupron shots because I had been experiencing horrible pain for over 12 years. I finished my 6 months of the lupron in Oct of 2006. The side affects i experienced were weight gain(about 30lbs), uncontrolable sadness and crying, and mood swings. The side affets were hard to deal with. I was really lucky not to have lost my fiance during the whole thing. I dont know how he could stand being around me, i could barely stand being around myself. Now that i have been off the Lupron for 2 months the pain is back, and I have to make the desicion if i want to go through another 6 months of the lupron shot. I think that the side affects as bad as they were are worth going through to stop the pain that I am in.
-- By deedee82704 | Reply | Send Private Mail
November 15th
2006
6:15 PM
I am currently on my Lupron and have found it to be a nightmare for me! I am only on it for one month. My doctor is wanting to see if the cyst and fibroids are the sourse of my pain. My pelvic pain has pretty much ended, but I would take it all back in a heart beat if it meant all these side effects would go away. Hot Flashes lasting about 10 minutes at a time, night sweats so bad I have had to change my clothing, migrains (I've had 5 in two weeks) that just knock me out for a full 24 hours, memory loss, joint pain, itchy skin, and mood swings like nothing I have ever experienced. To top it all off, I have had quite heavy bleeding while on it as well. I finally called the doctor and told him I was suffering more now than before the shot. He is going to put me on a small dose of esterdol (sp?) and see if that will help while I wait for this junk to leave my body. I just pray the effects will not be permanent.
I am happy for those who have found help for endo and cancer from this drug and I realize that some people will not have serious effects, but a certain percentage does. There's no way of knowing what you will do until you try it, but just be prepared that you could be one of unfortunate ones who do suffer horrifically while on Lupron.
-- By aretta | Reply | Send Private Mail
November 14th
2006
7:25 AM
My Doctor must really hate me! That is what I keep telling myself after my first Lupron injection. It has been absolutely horrible. Sure, my fibroid pain is better, but that is a small consolation compared to the migraines, hot flashes, night sweats, mood swings (very severe and un able to control) , memory loss and just kind of brain fog all day long, and horrific joint pain. All of which keeps me awake all night. It's been so bad I can't even appreciate the fact that the pelvic pain is better. I just pray these side effects will not cause permanent damage. I think our doctors need a good shot in the butt of Lupron for prescribing this stuff!
I do realize though that this drug has helped many people who are suffering with endo and that not everyone will experience these side effects. You will not know what your body is going to do until you try it. I don't know what the percentage is of people who do suffer while on the drug, but I just know I am definitely in that percentage and will NEVER take another injection of this stuff and will look over my doctors shoulder to make sure he writes in my records not to ever give me this stuff again!
-- By aretta | Reply | Send Private Mail
August 25th
2006
9:47 AM
I am only 18 and this is my second shot in the second month I feel that i cannot sleep, i can hardly eat without feeling sick, hot flashes, mood swings, can't go to the bathroom right, night sweats, i feel nauseated once in a while, my lower back hurts at least once a day, craving thirst alot, emotional all the time, not tired at all though, I just want to know if it gets any better or if it just cures the pain for a little while because I haven't really had any cramps lately except when I had my cycle last month and it was the heaviest one I have ever had.
-- By fallbackgurl | Reply | Send Private Mail
August 6th
2006
9:45 PM
I started on Lupron in January 2006 and took my last injection on June 27. I was taking Lupron for endometerosis. I had the hot flashes which were horrible, mood swings and insomnia, night sweats, and vaginal dryness. Lupron brochures states you do not want to get pregnant while on Lupron but they do not need to worry about it because sex is uncomfortable due to the vaginal dryness. It is now August and I still have not had a period. I would not recommend Lupron for anyone.
-- By tomsonegirl | Reply | Send Private Mail
July 31th
2006
10:18 AM
I was diagnosed with prostate cancer in 2004. Began taking Lupron Depot in 3 month intervals for 13 months because of the advanced stage of the cancer before radiation treatment. Almost immediately, side effects occurred, to wit: hot flashes, insomnia, mood swings, aggitation, severe headaches, ringing in the ears, dizziness, muscle and joint pain--particular in the neck, shoulders, elbows, knees and ankles--anxiety and panic attacks, bewilderment, night and day sweats for no apparent reason, high blood pressure and incidents of weakness accompanied by unexplainable general feeling of being ill. Ceased taking the Lupron in fall of 2004. I am still experiencing most (not all) of the side effects. Blood tests have shown the presence of the drug in amounts higher than expected still in my body however continuing to diminish. Good luck! Being strong willed is a must to endure many of the side effects delineated here. I anticipate I have 2 or 3 more years of hell before the Lupron dissipates from my body. "And this will pass..."
-- By vonramon | Reply | Send Private Mail
July 15th
2006
1:11 AM
I had my 5th and last injection in February 2006, I have yet to have a period, weight gain, depression, loss of sexual appetite, severe cramps. I feel like I am 50 and I'm only 35. I lost my job becuase of sickness, I have mood swings. I cannot take much more of this, please write to me if this has happened to you.
-- By page982001 | Reply | Send Private Mail
April 9th
2006
6:40 PM
I am 30 and had my first Lupron shot last week. Needless to say, I have been exhausted, dizzy, nauseous and have been experiencing headaches on and off. I have also been experiencing chest pains but not sure if it is because of Lupron or not. One evening I did experience abdominal cramping so severe that it woke me up. However, since the location of the cramping was on the side where my endo and uterine fibroids are I attribute the pain more to that than anything else. No memory or speech loss but I have mood swings, am craving EVERYTHING and could eat constantly if I did not discipline myself. I am hoping to avoid the weight gain through exercise and monitoring my carb and sugar intake. I think it should be medically required to take a week off of work after every injection so we can deal with the side effects...sometimes it sucks to be a girl :-P
-- By russdavisff | Reply | Send Private Mail
March 29th
2006
5:36 PM
The first time I took Lupron (for multiple ovarian cysts) I was a nervous wreck. I gained forty pounds, hated myself and everyone around me and had the worst hot flashes I have ever experienced. Let's not forget acne, back pain, insomnia and mood swings. I was very upset when my doctor put me on it again. However, I have to say that taking Provera as a add back hormone has really changed my thoughts on Lupron. I do have the same issues, but not to the same extent. In other words, the side affects are managable. I think it's better than suffering from multiple ovarian cysts...which are VERY painful for me.
-- By cdelang | Reply | Send Private Mail
February 25th
2006
8:59 PM
TREATMENT FOR CA PROSTATE SINCE 2 26 2002 WHEN PC SPES, WHICH WORKED AS WELL W/O THE LUPRON SIDE EFFECTS, WAS PULLED OFF THE MARKET: LUPRON SIDE EFFECTS INCLUDE- bloating, weight gain 10%, significant muscle mass deterioration, facial feature sharpness disappeared, mood swings, zero libido
-- By psarohan | Reply | Send Private Mail
January 26th
2006
6:22 PM
I've had 2 lapo surgery's and 3 yrs ago I went thru a different type of Lupron shots. A year ago my endo pain returned in full force. I started my new set of Lupron shots 2 weeks ago. My first concern was that my period lasted 10 days and That's never happened before. And now I've started having horrible migraines not to mention the mood swings and nightime hot flashes. But so far it's all worth it because my extreme endo pain is almost gone. Hopefully it will all be gone soon.
-- By sandsvalente | Reply | Send Private Mail
November 22th
2005
12:22 PM
I am a 30 year old woman of 2. I have just started my second round of Lupron. The first one wasn't so bad, I had some hair loss, lack of sex drive and mood swings. I knew this could happen before I took the drug. I did get relief while on the drug.
I took the entire 6 months worth, and when I was finished I started my period again within 2 months. It was worse than before, if thats possible. My doctor refuses to do surgery and said it is safe to stay on the drug "indefinatly" with hormone replacement therapy.
I have just had my second shot on round two, this time the hot flashes are so bad I couldn't sleep, my hair is falling out in huge clumps, mood swings were horrible and sex drive was a thing of the past. However I find when I take the low dose hormones I do feel better, it helps with the hot flashes, mood swings and sex drive, somewhat. The only other thing I have noticed this time is my breasts are getting slightly smaller. I think these are small prices to pay for the pain to be gone.
I am undecided as to what I am going to do for the future, but I will proceed with caution after reading your stories. Thank you for sharing.
September 12th
2005
10:49 AM
Anybody know how long it takes to get a period after discontinuing Lupron? I was supposed to get another shot in July but didn't because of the horrible side effects (guest #11408 below), and I've gradually begun to feel better. No more hot flashes and night sweats, most of the achiness and joint pain is gone, no more mood swings. But I still haven't gotten a period. I'm wondering if this is normal.
-- By ronjaybecca | Reply | Send Private Mail
December 12th
2004
12:56 PM
I just started my first Lupron treatment this past Thursday. I was diagnosed with stage IV aggressive and had lap and laser surgery on Nov. 8th of this year. My Doctor was very up front with me about the side effects but said that it helps some women with endo. After doing much research I decided to take the shot.
I'm into my fourth day and I'm experiencing a rash. My face has broken out, my chest has broken out, and I've broken out on my neck and upper back area. I read that acne can be a side effect but this is ridiculous. I'm 31 years old and have never experienced Acne!
I'm going to my Doctor tomorrow to see if she can give me something for this itchy rash. I'm hoping and praying that nothing else happens. No hot flashes or mood swings as of yet.
-- By littlemamamills | Reply | Send Private Mail
December 11th
2004
8:26 PM
I'm 24 with Endo, I'm getting my 2nd shot on the 16th of Dec.
I am dreding it! I don't think I can go another 3 months. I guess I have to, so I don't get the "Endo pain". Most importantly I'm taking it, so I don't become infertial. I'm looking forward to having a baby. I can't handle all of the symtoms; like hot flashes and then I suddenly get very cold! My sexual feeling is gone, I'm tormenting my boyfriend from the mood swings. There is so much pressure in my head. I get very forgetful and dizzy. I can't sleep at night. I think crazy thoughts. I have bad aches in my back and neck I thought about yoga to help the aches. I can't wait for it to all be over!! Please feel free to email me with any comments at ******
I'm glad to know that I'm not crazy after reading all of your comments.
December 2th
2004
5:25 AM
I was diagnosed with Endometriosis and only taking pain medication when needed. It got to the point where the medication stopped working. I decide to go ahead with the hysterectomy in April 2004. I continued to experience spotting and pain. My doctor and I decide the last resort to keep from having another surgery right away would be to try Lupron. I have had four injections and the symptoms I am experiencing are waking up at night, hot flashes and occasional mood swings. I started Premarin with this last injection and it is helping. I only hope after my final injection I will not have to go through another surgery.
-- By minukia1 | Reply | Send Private Mail
August 27th
2004
11:53 AM
I'm 21 and just received my 5th shot of Lupron for endo. and still my side effects are not all that bad. Yes I have had some side effects and yes I can't hardly wait to get off of it but it has not been anything like you are expecting or cannot handle. I have had more side effects with each shot mainly starting with the 3rd shot. Now I am experiencing more night sweats and I can tell that I have gained about 5 lbs. (that is watching it very closely) and most of all I have terrible mood swings. But one good thing is that is seems as thought my headaches aren't as frequent. All I can say is that I was terrified when I was researching and read all of the side effects and now I look back and yes it has been rough at times but if it helps me I would do it all over again. Just hang in there. If you have any questions you can email me at ****** Good Luck!
-- By whiting_niki | Reply | Send Private Mail
April 6th
2004
10:52 AM
I have taken my first shot almost 3 weeks ago. I am 36 years old with 1 child(15years old). I have a history of fibriods, scar tissue from prior surgeries. I only have 1 ovary due to cysts and tumor growth. I am in bad need of a tummy tuck due to prolapse abdomen muscles which leads to bad back pains. (Insurance won't cover) I do not know a day without pain to be honest. After my intial shot, I suffered a bad case of reflux. (Taking Protonix for it) Have gained some weight and feel very swollen. My legs are constantly hurting. I am not as active as I used to be, feeling very old & dry. I was already having menopausal symptoms before I started treatment (taking Zorloft)so the flashes & mood swings do not bother me. On the other hand I am not feeling the pain the same as I was and I feel in good spirits. Unlike others, I have increased sexual desire, problem is, I'm not currently in an relationship. After reading these comments not sure if I want to take a second dose. Has any female had any good results from the treatment? I really do not want an hysterectomy. Would appreciate any comments or shared views.
-- By laditea | Reply | Send Private Mail
February 17th
2004
2:26 PM
I AM SO GLAD {YET DISTURBED}TO SEE THAT IM NOT GOING CRAZY THE SIDE EFFECTS ARE REAL.I HAVE FELT SO ALONE IN THIS TREATMENT AND I FEAR MY FIANCE MY LEAVE ME {mood swing!} I AM SET FOR MY 2ND INJECTION IN TWO DAYS AND IM SO SCARED MY SIDE EFFECTS WILL BE WORSE. IVE HAD JUST LIKE THE REST THE HOT FLASHES, UNBAREABLE MOOD SWINGS AND IVE PUT ON 10 POUNDS. I DEFINATELY NEED A FRIEND FOR SUPPORT!
-- By penelopea420 | Reply | Send Private Mail
This registry is a place to share positive or negative side effects of using Lupron. If you directly experienced a side effect while using Lupron, then we encourage you to enter it here. Please note that entries here are the experiences of individual users, and in no way means that you or anyone else will experience the same side effect, since the same medication affects people in different ways. Please always contact your physician.
-- Please see our disclaimer
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by celine302002, 3 replies, updated 2 days ago.
August 11th
2008
3:37 PM
I had 3 injections of lupron Jan Feb and March and I stopped. I still feel lousy, my bones ache. Ever since the first shot I have not felt good thinking that this would help me, it did not. I wish people would stop talking about the price of this medication and start talking about the side affects. I sit and cry from my aches, I won't even go back to any Doctor. Thank-God that it is only so severe 3 weeks out of the month. has anyone experienced such side affects. and by the way my period never did stop and I am still in much pain from that.
-- By doodiebop | Reply | (1) replies | Send Private Mail