Lupron Victims Community Group

This is a group for those who have been on Lupron and it HAS NOT worked. It is also for those of us who have had the adverse side effects or those who stopped taking Lupron due to not being able to deal with the side effects. This is NOT a group for those who like Lupron. Thank you.

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After Stopping Injections

Of those of you who had weight gain as a side effect, can you tell me if/how you lost it once stopping the Lupron? I gained 25 lbs in 2.5 months and am nowhere near fitting into my wedding dress. I was exercising, drinking water, and eating less while gaining also. It was so distressing that I lost all motivation for the exercise regimen I was doing nightly. I got to the "it doesn't help so why try" mentality. I have started the points system of weight watchers, but I keep reading this is slower weight loss. I need something NOW. It would really help to hear if anyone had success in losing the weight after stopping the shots. I only had 2 and refused more. Everytime I see how much I weight or think about that gorgeous dress that will now be hideous on me, I just want to cry. I seriously don't want to be fat in my wedding pictures. I was overweight when I graduated high school, and to this day I cannot stand those pictures. I don't want my wedding pictures to be unbearable for me. I had lost 40 lbs 6 months before the endo was found, and I looked good. Dang...tearing up now just thinking about it...

Replies

deleted_user
deleted_user

Is there anyone still using this? Seems like no one is on anymore. Just in case, I have a question. I stopped after the 2 injections, as I couldn't handle the side effects. Now, a week after I should have had my 3rd shot, I have minor pain in my lower right side. This is exactly where the pain was when it was severe endometriosis. I do NOT want to be back on Lupron. I can't. But I don't want the endo coming back already. I am on the Nuvaring and have not had a cycle, so should this be happening??? Any suggestions what I should do????
deleted_user
deleted_user

I gained about 10 pounds on Lupron and pretty much lost most of it when I stopped the shots..without even trying. My endo came back within a month after stopping the Lupron, but I WILL NOT go back on it. I'm just dealing with the endo again and trying to figureout what to do. Sorry yo hear about your pain, hope it gets better soon!
deleted_user
deleted_user

How many shots had you received?
deleted_user
deleted_user

Also, are you planning on having kids someday? If so, does return of endo immediately make this difficult? I am getting married, and we want kids... What are you doing for your symptoms now?
deleted_user
deleted_user

I had 3 shots total..my last shot was October 5, 2007. I had to stop it because of bad muscle and joint pain. I wa diagnosed with fibromyalgia at the end of October. My doctor said its "not likely" due to Lupron. I disagree. 11 months later I'm still having all the side effects.
deleted_user
deleted_user

Jeez. And the endo is definately back for you also? How are you managing it? I am scared to death of having that severe pain I did before. So far it's minor, but it's only been a week since my missed shot. I am on the Nuvaring. I've read that should help. Have you (or anyon else) heard if the Nuvaring is effective? What about leaving it in for 4 weeks and immediately replacing it for 3-4 months? I've read that is done with pills, but I am not sure if the ring is the same for that.
deleted_user
deleted_user

I had 6 injections but did not gain as much weight. I noticed at first (about first 2 - 3 months I did want to eat uncontrollably, but then it subsided when I began taking add back therapy of provera/estrogen). Also I started doing an organic diet which involved wiping out wheat, dairy, soy, caffeine, fried/fatty foods. I do not eat any bread or much potatoes. I eat more veggies and fruits than anything else. Basically that made me lose my desire to overeat because I wiped out my house of lots of carbs and sugar (yeah, holidays are ROUGH). I do have a harder time with the sugar and I went a bit nuts this holiday and ate sugar and am now paying for it. Try eating air popped popcorn, no butter or salt when craving. I know this may not sound like much, but for me I dropped the extra weight fast. Hope this helps!!
deleted_user
deleted_user

i love the nuva ring im getting off the lupron and going on the ring!!!!
deleted_user
deleted_user

Hi, I took only ONE shot of Lupron and my abdomen is still bloated 8 months later! It's not weight gain and I am super thin. It seems to be fluid retention. Will it ever go away? I've been to four doctors now.

Diva416, are you feeling any better?
deleted_user
deleted_user

KeyLime - Yes, I am feeling better. It took a LONG time, and I never lost ALL the weight. I gained 25lbs on Lupron and lost about 15 of that. However, now I am 9 weeks pregnant!! :) Thank goodness I stopped the injections after 2! I changed doctors, and my new doctor said they would not have used Lupron as a 1st choice knowing I wanted kids, because the effects can last so long. Also, they said my old doctor should have given me "add back" therapy, which is a pill that helps with the side effects. So, if Lupron is the only option for you (I would try the constant birth control method first to stop the cycle - not having the week break for a period), demand add back therapy! The new doctor said that would have made a HUGE difference for me! However, I opted for the Nuvaring for several months instead. I went off that in March 2009 and became pregnant in January 2010. It is considered a high risk pregnancy (had a very early miscarriage while on the ring, which is why I came off), but so far so good!
gdecker658
gdecker658

Hey everyone I'm new on here and I've been off lupron since February and I still have no menstrual cycle. One of my gynos says its normal and the other says it too long and I have horrible cramps every day. Is this happening to anyone here? And about the weight gain I gained 35 lbs and no matter what I can't lose it.
deleted_user
deleted_user

im 39 yrs old and i have had the iud for years . had endo a year ago surgery then and i took the lupron shot 1 time for 3 months i didnt like the side effects of it for i had sharp back pains and aches and i felt bloated and didnt want to do anything i was dealing with depression so it was depressing me more being on the shot. itchy patches of skin . i had a mega weight gain and i wasnt happy about that because i was loseing weight and now well im trying to get that weight off and having a heck of a time doing so. i still have lower back pain daily some days worse than others . heating pad and arthritis pills usually do it if not the lidocane patch works .im going to have to talk to my doctor about this as for right now this is the only thing that is working to let me walk and be pain free and do my daily chores.i have other health issues that follow me as well so if its not one thing its another.
deleted_user
deleted_user

I switched doctors due to the one who gave me the injections saying there was no way the injections caused my effects. The new doctor said I should have been on add back therapy (a pill that helps with the side effects), as all my side effects were from Lupron. I ended up being on the Nuvaring for a long time to stop my cycle (4 weeks in, then taking it out and immediately replacing it). However, I had an early miscarriage while on it (would have been 3-4 weeks along, but without a cycle I had no idea I had gotten pregnant while on Nuvaring). After that, my husband and I decided to try to have a baby, which we FINALLY did! :) My cycle has not returned from that (baby is 5 months old), but I have had some menstrual cramps. They are NOTHING like they were with the endo. I had been told having a baby could keep the endo symptoms at bay for a long time if not permanently, and it looks like it's true for me so far. Keeping my fingers crossed!!!
Lotus - When did you have the surgery? Some of the endo may have returned. Mine did after going off the Nuvaring. My pain was so bad that I had decided to go back on the Nuvaring after nearly a year of unsuccessfully trying for a baby, but I got pg the month I planned to go back on it! lol I'm sorry about your pain! I was on a lot of vicodin for quite awhile, so I understand! :(
deleted_user
deleted_user

I took the lupron shot 1 time for 3 months due to endometriosis and i gained a total of 100 lbs. and havent been able to loose any of it. i have other heath issues too going on with me since the shot as to i havent had a period for over a year now . and according to doctors im not menapausal or hormonal. but maybe not makeing enough estrogen. so they are talking about putting me on a pill to help start the cycle he said if i didnt start it could form as cancer for me. but im having hot flashes and night sweats and the whole 9 yards. im thinking the lupron shot shut me down as to menstrate totally but i have a iud as a birth control device and this is my 2nd one since my last child in 96. i have 3 kids. dont want any more kids for im 39 yrs old. i cant be put on birth control pills due to me being epileptic. since i was 2 yrs old. so this merina was a better choice for me but no one told me that it would or could completly stop me from menstating either. i had had a period up till i had endo. and then it stoped and when i took the shot 1 time for 3 months it tollaly stopped after that and its been since aug,. last year up till oct. way over a year. good luck to us all for finding answers about that.
deleted_user
deleted_user

Glad to hear you're doing better, and Congratulations!

I am still suffering three years after ONE shot of Lupron. The drug actually destroyed my abdominal wall. I will have my second abdominal wall reconstruction surgery later this year. But doctors aren't optimistic that I can ever recover. Before Lupron my abdomen was always perfectly flat! ONE shot destroyed it! Oh, and my injury isn't even covered by insurance and my doctor lies about it and pretends it wasn't the Lupron.