Lupron Depot: My Side Effects
March 13, 2009 by Peggy Rowland
Filed under Women's Health
In my previous post, Lupron Depot: Worth the Side Effects?, I explained that I took three injections of Lupron for severe endometriosis a few years ago.
I had many of the common side effects, and some that your doctor may not mention. You may not experience these same effects. About.com has a good Lupron Depot page on side effects. And endometriosis.org gives you a great overview of how drugs like Lupron work.
My Lupron Depot side effects:
• Severe hot flashes – My face would turn red and I felt like my head and neck were in an oven. I got several of these a day, hence my photo choice! You won’t be drinking hot beverages while on this drug. Eek.
• Night sweats – My sleep was disturbed by waking up all sweaty. Cotton PJs recommended.
• Mood swings — As bad as the hot flashes were, the mood swings bothered me the most. I think they concerned me because they also affected my husband. I was just not myself.
• Feeling violent – This side effect isn’t talked about much. Just let me say that I’m not a violent person. In fact, I was voted “most courteous” in my high school class. But when taking this drug I finally realized why teenage boys sometimes act the way they do. I had no (or very little) estrogen left, and that made me do things like kick a hole in a wall and hit someone. (Not that teenage boys hit people, but I did feel out of control.)
• Hip pain — This usually occurred around the injection site and lasted for several months.
• Palpitations — My heart talked to me a lot.
The reason I took the drug was because my doc thought I needed another surgery and he felt it would be best if I were on the drug during that time. As I mentioned, the typical course of treatment is six months, but I stopped after three. I couldn’t take the side effects anymore.
To lessen side effects, you can take advantage of add-back therapy that helps replace some of the hormones lost. I didn’t do the add-back because I was told it would make my treatment less effective. All of my endo symptoms returned quickly after the effects of the third shot wore off.
Another thing to note is that Lupron can cause bone thinning. You’ll have to take a lot of calcium while on the drug.
Obviously, I didn’t finish my recommended treatment, so I can’t tell you if the drug is effective. I can only say that, if it works, the side effects are a stiff price to pay for a treatment, not a cure.
Lupron isn’t all bad. It has been helpful to many people, but my feelings of doubt and wonder before I consented to the injections are what made me feel I had to share this. I want to present my honest experience.
Would I take Lupron again? No. Would it be good for you? That’s something only you and your doctor can decide together.
Please share your Lupron experience in comments.
(This info is for educational purposes only. It does not substitute for advice from a medical professional.)
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I just received my first Lupron shot about 3 days ago and I’ve never experienced hip, back , and leg pain like this!!!!!!! I’m 20 years old and I feel like an 80 year old woman. My stomach has been feeling upset, and I’ve been feeling light headed and dizzy. I don’t know if maybe I’m just overreacting because I’ve heard all these TERRIBLE things about this drug or what. But I’m not sure if I can do this for 6 months..
Torie, hang in there! I’m not sure why you’re taking Lupron, but add-back therapy is available to ease some of the side effects. Also, talk to your pharmacist to make sure you’re taking enough calcium. You take extra when on Lupron, more than you might think.
Good luck.
I had laparoscopic surgery in November which was to be followed by 6 months of Lupron hormone therapy. I am cutting my treatment plan short by one month finally! I wanted to stop it after my second injection thanks to side effects, but my doctor kept persuading me to continuing it. I am 24 and a full time student working close to 30 hours a week, so granted I am under a lot of stress. With that said, I feel that my personal stress load may have worsened my symptoms. During my treatment I was prescribed several medications to cope with the lupron side effects. I was given Paxil for anxiety because my heart palpitations were so intense that i couldn’t function(sleep, eat, socialize, have sex). I also had horrible mood swings to the point that my boyfriend/roommate deserves the biggest gold star of all! I was prescribed xanax, anti inflammatories, narcotic pain meds, ambien, had to get on a new birth control nicknamed the “mini”pill. My life has been upside-down, and as soon as the last little bit left in my system is gone, I hope to be able to return to my normal self. Being thrown into a premature temporary state of menapause has not been fun but hopefully I the endo will not return. I would never take lupron again. I know that some have found relief from it, and I can only cross my fingers and hope that in a few months I will find myself to be one of them
Hi,
I am a very active dancer and actor and I’m 51 years old.
I’ve been on Lupron for 6 months for extremely large fibroids and excessive bleeding. It took about 5 injections for it to take total effect and completely stop the bleeding. The hot flashes were severe in the beginning and I did experience occasional fatigue and some “brain fog” but that is over now and the hot flases have amounted to just several a day if any. I have had almost a 50% reduction in the size of my uterus (which was the size of a 14 week pregnancy) and the fibroids. Basically, this drug has given me a much better quality of life. I must add that I do exercise regularly and eat a mostly organic diet. I still indulge in chocolate brownies!!!
If you want the truth story go to lupronexposed.com . there are thousands of women who have lost their way of life due to the side effects of this toxic drug. Get the MSDA sheet which OSHA has put out. Call Abbot Pharmaceutical company and request it. This is listed as a hazzards drug, as leuprolide, the brand name is lupron as you will see on the bottom of the sheet. I know of a friend who had 2 injections four years ago and has been unable to work and lost everything. she lives in pain. doctors do not know what to do to reverse this terrible condition.. It did wiped out her immune system.
I took one shot of 3.75 Lupron depot nearly 30 days ago. I WILL NOT TAKE ANOTHER. The side effects were worse than the symptoms of endo I was experiencing. I had immediatly severe mood swings, and currently am suffering from extreme depression and high anxiety. This drug is TOXIC.
I took microdose of Lupron (20 units, twice a day) for 9 days as part of the treatment for infertility. Side effects are terrible. First day I was very weak, had a strong headache, memory loss and too friequent urination. After 2-3 day nightsweating started. Since I stoped taking lupron 3 days ago I have bleading – spotting and the worse of all – tingling on my face and head all day long. This is a horrible drug and should not be ever used. I do not know what to do. Please, please do not take this poison. Do not make the same mistake like I did.
I just got my first Lupron shot less than a week ago and that day I felt so dizzy and sick to my stomach. Now its not so bad, but my doctor automatically put me on the add back therapy. Do you know if its true that it makes the treatment less effective? I just can’t handle the pain so I decided that doing the Lupron would be a good option. So far I haven’t had too many problems since the first day… but then again its been less than a week. When did all of you start feeling the changes? Thanks!
Kristi, every situation is different. My doc thought that add-back would make my treatment less effective, but I also had severe endo diagnosed when I was 28. Add-back may be OK for you.
I believe my side effects started within a week.
I was on the Lupron Depo shot last year and what a mess. It was bad from day 1. I started feeling the side effects in a matter of days from excruciating painful cramps to hot flashes and flu like symptoms. After my third shot I couldnt get out of bed anymore, I went back to my Dr and told him of my side effects that he had not even been made aware of by the drug company.
It is more than a year later since I have received any of these shots and I am still not right to this day. Please if anyone is going to consider this drug for treatment of your condition, please look into it further with your Dr. before making any mistakes like I did.
I am a 27 year old nurse that has only seen lupron used for treatment of male prostate cancer prior to my diagnosis of endometrosis and I knew that it made those poor men crazy wheb they were on it so I was scared prior to treatment but my doctor laid everything out all the possibilities and side effects and gave me lots of reading material, and after ending up in the ER 2 times in such sever endometrosis pain I decided to go on the Lupron. I have been on lupron plus add-back since july I have had 2 injections and have not had a side effect one. I am taking 2000mg of calcium so suffer from constapation related to that. My endometrosis pain is nearly non-existant now I am glad for lupron, but very sorry that you all did not get the same benifits that I did. For people out there it is not always bad for everyone it is going to be different from person to person but it is always good to get all sides before making such a big decision!
i was on lupron for 6 months and it has been the best 6 months of my life, ya there were side affects but they were nothing compared to the pain that i have been having for 13 years. never knew what it would feel like to be pain free but it is awesome i would do it a thousand times over.
Did you take ad back therapy with your lupron depot? I was going to take the Lupron but now am terrified after reading all these horror stories. Don’t know what to do now. My doctor said the add back would lessen the side effects. I noticed most of the people who are posting are not mentioning weather or not they took ad back therapy. I am totally confused.
Barbara, I know I’m not Holly, but to answer your question in general, no – I didn’t take add back. That should help with the side effects. My doc said it would be more effective if I didn’t take the add back. However, this is just a treatment anyway, not a cure, so maybe that part doesn’t matter so much. If I ever HAD to take it again (don’t see that happening), I’d try the add back. It’s pretty tough without it.
I took Lupron shots about 2 years ago. My experience with all the side effects are just like everyone else’s. I had my last laproscopy after my last Lupron shot 2 years ago. Since then my period has gotten heavier every month, cramps more frequent and excrutiating each month, pain during sex which I never had before…and it feels like someone is ripping my cervix out. I have to lay there curled up in a ball, I sweat to death and feel like throwing up and passing out…all for about 30 minutes. I get this weird stabbing pain in my pelvic area that feels better when I push my stomach out. My appendix hurts every now and then. Pain shoots down into my thighs. I need to go back to have another Laproscopy obviously, but has anyone else taken any other medicines to decrease the pain of endometriosis? I just want to have kids one day and I will go through Lupron’s horrible side effects if I have too. Also, I’m now gettin these weird indentions on my upper thighs…does anyone have that…I read Lupron can cause disfigurment???
Eliabeth,
If you’re still having that much pain after your lap, perhaps you should seek out a more skilled surgeon. The endo lesions need to be surgically removed, cut out. Not everyone is as skilled with this. Some surgeons will just diagnose and free up scar tissue, leaving the lesions. That happened to me for my first surgery.
If you have another surgery, be sure to ask exactly what will be done. Also, I think you may be worrying a little much about the Lupron. Be sure to ask your doctor about side effects, and not believe some of the extreme things you read on the web. Disfigurement is a bit out there!
Yes, I’ve successfully taken birth control pills (with low dose estrogen – Loestrin) for endo. Ask your doc if that’s an option for you.
I had laprascopy in June to unblock my tubes and remove pelvic adhesions and treat infertility. Four months after, a hemorragic cyst had reached 7cm on my ovary and I had to go in for another lap. That is when they diagnosed my Stage IV Endo. One month after the lap, I was put on Lupron and have been on it for four weeks, so far. I had cramping during the first week, but since then no symptoms whatsoever. I am also using add-back therapy – and my RE made no indication that it would make the Lupron less effective.
I was very nervous to even start Lupron, because I had done so much research and read all of the horror stories about the drug. I ultimately decided to take this path, because this is our last shot at conceiving naturally. The Lupron is only a treatment – not a cure, but it will give my body time to heal correctly without new Endo and tissue growth.
While reading, I noticed most of these horror stories were experienced with the monthly injections, and I am currently on the 3-month injection. Maybe that is why there is such a drastic difference? Also, everyone is different and you never know how your body will react to anything. I just wanted to share my story and let women know that there are success stories along with the horror stories. Good luck to all…