Lupron?

[lisabar36]

Hi, did anyone get Lupron injections? I started my first Lupron injection yesterday, my periods started being extremely painful about 2 yrs ago, in Sept I started to bleed very heavy with such bad pain I can barely walk when I have my period, I had the cryoablation procedure done, the in office one with the freezing, I had no success, I started to bleed even more after it and it would stop for a week and start back up again. They could not give me birth control because yes I admit it, I am a smoker. And they said even if I was to quit, as I have been trying, I still could not take the chance because I did smoke for so many years it puts me in a high risk bracket. So they wanted to start the Lupron, because they want to see if my periods are causing a great deal of my pain, they said if they stop my periods and I have a decrease in pain they will know then my periods are a huge issue, and then do a hysterectomy, they said if I maintain the same pain without my period, then they will know my periods are not responsible for my pain and proceed from there. They also want me to be in better shape before a hysterectomy, finish my PT, have my pain more controlled and are thinking a hysto is my best option so I don't start to bleed again so heavily. They did give me a replacement hormone called Femhrt. I did explain to the doctor, I am very cautious as to what I take because my mom had breast cancer and I been a smoker. I know they told my mom she could not have hormone replacement because of the breast CA and other docs have told me that I could not either, because it puts me at greater risk, but the nurse from the Lupron that called said I can take this and my doctor did also. So if anyone has had the lupron, I would love to hear if it helped. Thank you

[lisabar36]

also I want to add, they are doing an endometrial biopsy next month to make sure everything is ok and its not of a more urgent nature as to the cause of my bleeding.

[GriffsMommy]

Lisa,
I know you'll get some replies because I asked about it before I told Dr. E I would do it. I know alot of people have tried it, some with good results, some not. I'll def let you know how mine goes today. I am really nervous but hopefully it will help. He didn't tell me I would get a hysto if they Lupron helped, just said surgical option so I'll have to ask him about that today.

[lisabar36]

Hey Christine, well he said he didn't want to take the chance of my bleeding coming back, because I bleed for 3 weeks, then stopped for a week, then started again for a week and a half and then stopped and then 2 weeks later started again and I was feeling so weak! I was soaking through my pads to. But he did say he wanted to get my IC and pelvic pain much more under control first. On my last visit he said it may be my best option for the bleeding issues and he then said we will have plenty of time to talk about that because that would be summertime and now wanted to focus on getting the bleeding to stop. I think if I wasn't bleeding so badly and infrequent, he wouldn't want to consider the hysto right away when I am done the lupron unless my pain decreases with the lupron. Good luck today! I will be thinking of you. :)

[ABliske]

I almost went on it when the cause of my pain was thought to be endo. I didn't though because my co-worker and her sister had it done 10 years ago and still suffer side effects. It is not proven to be from Lupron, but they believe the cause of mild seisures they suffer during their time of month to be from the hormone therapy. It scared me enough to keep me away. I have seen my co-worker space out and then not remember anything. Her sis had her license taken away because of it.
It might be good though that you are just doing in on a trial basis. Hopefully, it will give you some answers.

[lisabar36]

Yes for me its only 6 months, I was not thrilled about the hormone replacement therapy, would have liked to try toughing it out and I have a friend that did not get replacement therapy and she did pretty good. But now the nurse that called me about the Lupron, could not stress enough how important it is to have that replacement and since its short term I should be fine, the doctor also confirmed that. I would have had my hysterectomy right away if I didn't have all these other issues with my pelvic muscles and my IC which makes great sense to me to get me to feeling much better before the surgery to avoid me more pain. But thank you for your reply, its good to know this information.

[ABliske]

Oh yes I remember hearing about Addback for hormone replacement. It sounds like a good idea because there can be some side effects like weight pain, voice deepening and also hot flashes etc. I hope that you do not have too hard of a time on it. Good luck! Keep us posted.

[GriffsMommy]

Alright Lisa, I got my shot in the butt from Sandy today. Now we really are Lupron sisters, lol. It wasn't too bad but now I have this weird taste in my mouth but that could be from the xanax I took for the first time, the Lupron or the replacement hormones. God only knows. I'm kinda waiting to start feeling different or weird but I guess it takes more than a couple of hours for you to have any side effects.

[lisabar36]

Hi, I haven't noticed anything yet, lol. The only thing for me was my eyes felt weird on the drive home, like I had a pressure behind my eye, but it went away quickly and it could of been my nerves. Today I feel slightly bloated and swollen, but not bad. I am starting the replacement hormone tonight, I fell asleep last night and didn't take it! I read symptoms increase for the first 2 weeks and then the levels drop after that to more menopause levels, I read that online tonight. Keep me posted on how your feeling!!!! :)

[lisabar36]

Ok, last night I started with a backache, then some menstrual cramps, I had a hard time falling asleep. I was achy and crampy, so I went to the Lupron website and this is what I found below. Now correct me if I am wrong, we are taking add back hormone therapy, but it says below are hormones already increase before they get lower, which will cause symptoms to worsen, so durning this time, I would think adding more hormones to already increased levels, would for sure make them worsen. I put a call to the Lupron nurse that is following me. If hormones already increase before they lower, and we add hormones on top of that, then the hormone levels will even be higher. I will keep you posted as to what the nurse says. I am sure they wouldn't tell us to start it right away if we would have increased pain, but I don't want to go through any extra pain if I can prevent that. I am curious as to why we couldn't start it after the levels drop, unless its because it builds up in our system by then and once the levels drop we won't feel it as bad, but....... I do not want my pain extra increased either cause its bad enough during my period and I just thought it would be good to know why they want us to start it right away. I know we have to get through the first 2 weeks, but I just had a period and I was in so much pain and to have it start again already, and increased, oh boy.

This was on the Lupron website:
After your first injection of Lupron Depot, your reproductive hormones may increase for 1 or 2 weeks. During that time, you may notice an increase in your current symptoms. After two weeks, these hormone levels should decline.

[GriffsMommy]

Ugh, Lisa! I emailed you back again. I felt like crap when I woke up this morning. Sore back, pelvic pain, I didn't want to move. Obviously the Lupron is stronger than the nerve blocks because normally I feel sooo much better the day after one but not today. Last week I didn't have to take a daytime dose of vicoden the day after my nerve blocks but it seems the Lupron is counter acting that one. I have to go take one in a minute actually before it gets too bad.
Good question about the hormones. I didn't even think to ask that. Maybe it's because they don't know when the hormone levels will drop off because it's different for each person so they want you to start taking the hormones from the start to make sure you're covered? I will be interested to hear what the nurse says. I left the number for my Lupron nurse in my desk drawer at work. I am supposed to go by there soon and pick up a couple of things so I'll have to remember to get that. I know her name is Bethany but I don't have the number.
I totally agree with you about the pain though. My biggest fear is that my pain will get like it was with my period this week and I won't have anything stronger than the vicoden because he said he would give me a stronger script closer to the time I would get my period.

[lisabar36]

My theory holds true. The Lupron nurse was unaware the doctor would order something with estrogen, she said some doctors do, but all they recomend is norethindrone 5mg, We got added estrogen as an extra precaution to really help when the levels drop. My levels just increased as they were supposed to and I am glad I didn't have any added estrogen right now on top of how bad I was feeling. She said its ok to have the extra estrogen, but in my case and she can't offer medical advice, I cannot, because of my family history and my moms breast cancer at a young age. I told her I was ALWAYS told no estrogen, but they say in doses so small it doesn't matter, but I seen some studies and I will not take it. I told her I would rather go without hormone replacement in that case, but I will ask my doctor to change it to norethindrone aceteta since I don't feel comfortable taking it with the estrogen even in a low dose, he is very good, I know they will be fine with that.

[A.J.]

Lisa,
I feel like we're the same person! I tried Lupron earlier this year, and even with addback, it didn't work for me. I don't want to discourage you in any way because who knows, it may work! But because of my awful periods my options are either lupron, an IUD, or hysterectomy. Yesterday I got an IUD put in and I'm just crossing my fingers that it will work. It has been painful and less than fun but I just have to wait it out. I hope the lupron works for you. Good luck :D

[lisabar36]

Thank you Allison, I appreciate any feed back I can get! Whether good or bad. I was told I would feel the estrogen surge, but oh man, how do you prepare for that? I have so much bleeding all the time and such horrible painful periods and I need a hysterectomy, but have to wait until my IC is more controlled and my pain is more controlled, and I finish therapy for PFD. Good luck with your IUD, I really hope that works for you. I am keeping my fingers crossed, I am staying positive, going to try and keep busy with my kids to keep my mind off it. Thanks again!

[GriffsMommy]

Oh man Lisa, I'm feeling crappy today!! Did you ache all over? I almost feel like I have the flu I'm so achey. My arms are killing me right now, I have a headache and things don't feel normal down yonder. I was going to go shopping for stocking stuffers but I sure as heck don't feel up to it now. I'm not crying yet but I warned the boys that if it happened not to be worried. Blah! Of course I feel crappy on a Saturday and I don't have the number for the Lupron nurse so I can't call her and see if this stuff is normal. Oh well. :loco:

[lisabar36]

Hey, I emailed you back! I talked with the nurse about the side effects of what Dr E gave us and there are alot because of the added Estrogen. Now I have not taken mine cause I need it changed but if they continue I would tell DR E about the nausea and headaches. I hurt down there yesterday to, she said that was normal, high estrogen levels can cause that. It wasn't to bad but it was noticeable, I feel much better today. They say when the estrogen gets high, you will feel like you would before a period but more intense. then the levels will come down as mine did, thank goodness cause I was a wreck yesterday. I ached the day before yesterday, but not as bad yesterday, I was super tired though eventually mid day and slept for hours! I did alot of crying. Keep me posted! I hope this passes quickly but if for some reason you really start to feel bad I would call DR E and have him paged! No fever right? I am thinking of you. :pray:

[GriffsMommy]

No, no fever. I feel really jittery but that could be because I need to eat. I don't think I'll have to call Dr. E. I'm going to go make something to eat and then go and rest. The older kids are cleaning some and they're going to watch Griffin for me so I can rest. I emailed ya back and I'll talk to you soon. Thanks for the info and support Lupron sis!

[marycat2007]

I just finished a 6 month treatment of Lupon and addback estrogen. I had to go into my Dr's office monthly to get the shot. My doctor is a gyne/endocrinologist and has many patients with IC. She is one of my favorite doctors. After 3 weeks of getting the initial shot, I got terrible hot flashes and was getting irritable. I then started the add back (enjuvia) which automatically shut down the hot flashes. Although I never had heavy bleeding, I would get terrible flares before my period. When I flared, my ovaries ached as did the glands located in the pelvic floor. Also, my left buttock, leg and left foot would get extremely achey. My Dr did a pelvic exam and ultrasound and said that I had endometriosis. The lupon helped reduce these symptoms. I had no side effects from the add back. It is a very small dose of estrogen. The only negative side effects of Lupon were my mood changes that I experienced during the 4th week of the injection. This only occured in the 5th and 6th month. Other negative effects were that I had to drive into Chicago every month to get the shot, plus Lupon cost approximately $500 per shot. My medicare covered this. I just stared taking a birth control med called norethindrone. Too early to tell if its having a good or bad effect. I am currently in a 5 day flare which included excessive frequency--over 80 times yesterday. I would recommend lupon because I did not have many serious flares and my endo calmed down. I have been on disability 4 years because of my bladder. Although I despise having IC, I am grateful for the blessings it has brought me. God works in mysterious ways!!!!

[lisabar36]

Hi, I have norethindrone as my add back therapy. I have things going against me with the hormones, for one I smoke, and even if I quit, I still can't have them now cause I smoked to long and also my mom had breast cancer so any estrogen is not an option for me. I had a friend that went through it fine with minimal side effects and no add back hormone, and I have heard of many with a ton of side effects. I only had 2 shots, and after my shot my head pounds to the point I cannot sleep, it throbs so bad, I was told that is one of the severe adverse effects and when that happens they don't recomend you get anymore shots, thats what the Lupron nurse told me. My other fear is I am underweight, and the Lupron makes me not eat for days, I have totally lost my appetite. I can't afford to loose a pound. I think lupron is GREAT for the many that can tolerate it. I was really excited about it. My head stopped pounding about a week after the shot and upset stomach lasted about 2 weeks and the loss of appetite has not gone away. So for me, the best thing is to have my hysto because I was on Lupron for irregular and heavy bleeding, not for endo, so the doc said that would probably come right back when done the shots but he was trying to buy me some time to get my IC under control. I have HORRIBLE period flares also, they are a nightmare. I told the doc I didn't think I could handle one more period, I literally can't walk when I get it. :) Lisa

[mich2604]

I will be following this thread closely , so please keep posting experiences.

My gyno recommended this today to me as something to think about.