How are you feeling after your Lupron injections? Any side effects?

(Monday, February 05, 2007) Editing this post a bit to include my experience because I’m noticing that people aren’t really reading my Related Posts at the end. Let me make a couple of points first.

Note: Please realize that you are online. By its nature, the Internet will draw women having problems with fibroids and looking for answers. Women with great Lupron treatment experiences probably aren’t posting about it online. I discovered this when looking for information several months ago. I was alarmed by the disproportionate number of negative Lupron experiences and decided to start a blog with a more balanced perspective. Hopefully, I’ve come close to that.

Second point. I have a post about the bell curve. (Actually, there are a few women on the site that mention it.) A bell curve is a very good way to think about any fibroid treatment. Some women will land on one end of the curve or the other but MOST will fall in the middle right under the bell. MOST women who take Lupron will benefit from it. MOST will have limited side effects.

Here’s my experience.

From the post that describes my first month on Lupron:

*Recap: Had a period (7 days) with clots and cramps about 2 weeks after the injection. Continued to spot every day afterward. Occasional headaches (possibly from anemia).

Second month on Lupron:

*Recap: Passed huge clots without cramps the day of the injection. Continued to spot every day. Passed smaller clots without cramps on several occasions. Night sweats without the sweat. Just the heat.

Third month on Lupron:

*Recap: Continued to spot every day. Passed tiny clots with cramps on several occasions. Hot flashes. No sweat but yes, they were hot!

Neither heaven nor hell:

So yes, when given this choice between:

  1. bleeding profusely, becoming more anemic, and eventually saying okay to a blood transfusion or
  2. bleeding some, having a few hot flashes, and no longer continuously feeling faint,

I weighed the benefits (preparation for surgery) against the risks (side effects), squared it with my mind, body, and spirit and picked #2! Three months of Lupron. No regrets.

I’ll also include the 8-page Patient Information Report for the 3.75 mg monthly injection. It’s a PDF file so you need Adobe Reader to view it.

Now, back to the original post…

One of the visitors to this site is about to start Lupron shots for 3 months. Since there have been a couple of comments about injections, continued bleeding, and side effects, I decided to create a thread to stick in the Forum. You can follow the details of my personal experience (hot flashes, night sweats, etc.) as well as read other information in the Related Posts at the end but I will include a short timeline:

1st Lupron Shot – middle of February
Last multiple day period – end of February
2nd Lupron Shot – middle of March (continued spotting/bleeding)
Last Lupron Shot – middle of April (continued spotting/bleeding)
Spotting/bleeding finally stopped – end of May
Next multiple day period – end of June

Time between my last Lupron shot and my period = 10 weeks
Time between my “periods” while on Lupron = 4 months

Excerpts from visitor posts: (Click the link to view the entire comment.)

Saragail: I’ve just completed my third round of Lupron. It’s been about 1 month and 2 weeks since my last shot, yet I haven’t started my period.

C.: I took Lupron 4 years ago and am currently searching for information about it. I still suffer memory problems from my 6 months on Lupron.

nanci: Had first lupron shot on 6/17 after having a few months of heavy periods and clotting. also had the feeling of a very full stomach. although the bleeding has basicallly stopped(still have very slight bleeding)

My advice:

Have a clear understanding in your mind about why you are taking it. Know that the treatment can be beneficial but is not perfect. Make sure you have a support system that allows you to contact a health care professional with your questions.

If you have thoughts, questions, or a Lupron experience, please leave a comment.

[Edited to add: I created another post that will (hopefully) shed more light on GnRH agonists and the side effects of this drug class: Tell me about Lupron, Synarel, and Zoladex (gonadotropin-releasing hormone agonists) ]

——————–

Related Posts: (Yep, spent much time writing about my Lupron experience.)
Life under the bell curve
What the heck is a gonadotropin-releasing hormone agonist?
Get support from nurses during your Lupron treatment
Deciding on my Lupron Depot injection dosage
That first Lupron injection in February
My second Lupron injection in March
The very last Lupron injection in April
Lupron is neither heaven nor hell
Iron pills, Lupron injections, and the return of little Miss Perky

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384 Responses to “How are you feeling after your Lupron injections? Any side effects?”

  1. Mike Says:

    great info… many thanks

  2. elmore6 Says:

    Had my first Lupron injection November 2nd. Had severe (like we called 9-11) hemorrhaginig on Nov. 17th. That stopped that day, and I did not bleed amy more, but still had some minimal cramping. Had shot #2 Dec. 1st…no bleeding still, slight cramping, some mood swings and mild hot flashes. On Dec. 5th had severe cramping and that “period backache’ and on the 6th, today, I began to bleed again. If Lupron shuts down the pituitary gland and hormines stop, wth is going on?? I am discouraged and none too happy.

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  4. Lucky Says:

    i thank u so much for posting this! i have been bleeding/spotting since my first shot of Lupron Feb 1st (today is march 10th) and didnt kno WHAT the heck was going on.

  5. MiAs Says:

    Was put on a 6 month treatment of lupron. I got my first shot in January while I was on my period. I ended my period and I stopped bleeding. After the third shot i started to spot. I am about to get my fifth shot in two weeks and I am still bleeding. My cramping seems to get worse and I am starting to see clots. I started off fine with no bleeding the first two months but then why would i suddently start bleeding? I know spotting is normally but its more than spotting now. I called my doctor and she doesnt know why this is happening. I have to see her in two weeks hopefully she will have some answers.

  6. friendlyface Says:

    I was on lupron too but I had a part hysterectomy in 2005. I have 3 cysts on my right ovary. I have a lot of pain and that is why I was on it. I was having side effects from it and I wanted to stop taking it. My doctors thought that I was depressed that was why I wanted to stop taking it. They made me feel like I was making it all up. I was short of breath all the time, I couldn’t sleep, and my joints hurt so bad that I some days I can’t even eat on my own. So eventually I had to stop working. I have lost all my doctors because no one believes me that Lupron has done this to me. The pain did go away but the side effects were so intense I could not handle it any more. I haven’t had a shot in a few months and my joints still hurt a lot. The hot flashes have stopped and I can breath better now. But what I have read on line the joint pain is not reversible.

  7. ltlones Says:

    During the 7th month of my 5th pregnancy, I developed a seizure disorder. I was originally given a diagnosis of CHOREA Garavidarum, although I did not fit any of the criteria for the disorder. Two years following the original diagnosis and 22 months post delivery, I was still having seizures. I had numerous MRI and CT scans, video and electrode monitoring and blood draws. After being told by 3 neurologists that I was making it up for attention, I went to an Epileptic Specialist and was diagnosed with Non-Psychogenic Epileptic Seizures (NPES), a conversion disorder. I was told through therapy and learning different coping techniques I could overcome my problems. This still didn’t make any sense to me, so I went to my OBGYN for help. Since pregnancy affects hormones, I thought that my seizures had to be hormonally related. The doctor agreed and put me on a 3 month trial of Lupron. Within 3 months, the seizures had completely stopped and I was taking one fourth of the prescribed medication.

    I had 2 three month injections of Lupron with the initial cycle, minor menopause symptoms in the first month and nothing since. No spotting, bloating, mood swings or hot flashes.

    I did not have my most recent injection and the seizures returned full force within 2 weeks. I had to increase my anti-seizure meds to their initial levels. In addition to the seizures, I have been having bad headaches/migraines and pre-menstrual symptoms. I have not been cramping, spotting or bleeding. In 2 weeks, I will have my 3rd 3 month Lupron injection.

    I was diagnosed with polycystic ovarian syndrome and Hashimoto’s in 1998. The Lupron shot has completely cleared out my cysts. If it could only fix my thyroid as well, it would truly be a wonder drug!

    I hope this information will be helpful to others and thank you eclecticgeek for posting this forum.

  8. jodi Says:

    Hello, thanks for all the great information! all the posts are also very helpful….I have had my first injection two and half weeks ago, I have been unwell for THREE YEARS! my periods were very bad, and I have constant right sided abdominal pain…they took out my appendix, my gallbladder, and so many tests I lost count….when i menstrate, I sleep with towels under me every month… three months ago I missed my period ..they said I have three uterine fibroids, a 5cm ovarian cyst, for two months I missed my period. They did an ultra sound, they said the cyst was normal…finally an ob\gyn, said lets start lupron to see if it helps your pain, and lesson your periods, and if so we will know that its your reproductive organs that are causing your pain…then we will go ahead and do surgery.Its been one and half weeks since my injection
    the first week after my injection I had a high heart rate, problems sleeping, and some increased pain in my lower back and cramps…. that seemed to be it…and now for two days i am bleeding, and now have large clots…..I called the dr. yesturday and was told for your first injection thats “normal”, but the clots are quite consurning to me!! did anyone experiance this? and if anyone took lupron for pain when did they notice there pain let up some??? I do hope to read more of the possitive effects of Lupron, reading all the scary posts on other sites have made me pretty scared to go back for the 2nd injection…..

  9. Ebony Says:

    I have a big fibroid that just sucks everything out of me. I had my second blood transfusion this year and the dr decided to try the lupron shot yesterday. The first day of my period was Monday, I also needed a transfusion that same day. Today my blood flow is heavier and I am passing very big clots, like extremely big. I called my doctor earlier and they told me this happens at first. I am worried because one I am at work, 2 this is scary, what was the point of getting the blood and than the shot to bleed the way I am. I don’t want to go to the hospital for nothing if these are the side effects.

    • Richelle Says:

      Hi Ebony

      I did the lupron, my side effects where good and bad. It broke my face out, but it slowed the bleeding down. After a while it stop working and I had to get a mymectomy. If your fibroids are large, you need to find a doctor that does complicated mymectomies. My fibroids were intertwined with my uterus and surgeon, was able to remove them and reconstruct my uterus. I am 7 months post op, I have no fibroids and my uterus has healed. I am hoping to start having a child next .

  10. Ashley Says:

    Hi all! I am on my 4th out of 6th month of lupron! Whoa so close I can see the light! I have endometriosis stage 3 as well a PCOS. Just last Sept I had an explorative laprascope done due to a previous miscarriage that’s when the dr found endo! Before this I was under the impression I only had PCOS which was diagnosed a couple years ago now. Always had bad cramping guess I just grew accustomed to them and never knew any different! I immediately began lupron injections after my surgery and the side effects hit me hard at first but have subsided some or maybe I am getting used to them. I seemed to have every side effect u can think of from the beginning-hot flashes, insomnia, moodiness, disorientation and joint pain mainly I tell people I literally feel like I am 60 years old while I’m only 24! Things have gotten better for me since the first shot I can feel hot flashes coming and know how to avoid them from making me feel awful, etc. I know this drug will pay off for me in the end and I’m am more positive and excited for the future with each shot I get. Although I am confused I just today started spotting, haven’t bleed at all thru my shots except in the first month as expected. I was curious to if any one else has been 4 shots in and started to spot as well. I will def call my dr and ask them tomorrow but personal stories of success always help! Hoping all this mess will help me conceive and carry full term this time!
    -ash 🙂

  11. andrea Says:

    i was on lupron for 6 months. i had little side effects. it work by shrinking my tumor which was the size of a football. i was very affraid of surgery so we went with this shot. it has helped me tremedously and i would definitly recommend. the best choice for me. two thumbs up

    • Sue Says:

      Andrea,
      I also have a large fibroid and I am wondering if you are following up with surgery or did Lupron do the trick? I am worried that after six months it will just grow again…. Also, did you take a hormone supplement while taking lupron?

  12. Vanessa Says:

    Ive just received my second lupron shot of 3.75 and Im doing quite well on it.Im not moody but Ive been spotting for about30 days and Ive only had two hot flashes at night and I had to take the cover off for about 3 minutes no sweating involved.Ive been having headache almost everyday but its not anything I cant dill with.So I hope this can help someone its been a so far so good exsperiance..

  13. Julie Nelson Says:

    My experience with Lupron Depot was a largely positive one. I had been diagnosed with endometriosis at age 37, after years of dealing with heavy menses and pain that was accompanied by trembling, fatigue, diarrhea and periodic (no pun intended) depression.

    I took an add back therapy to offset any hot flashes, which appear to be a side effect without the progesterone.

    One experienced a mild fatigue the first couple of days, post my first injection. No other complaints.

    My quality of life dramatically changed. I did not miss my menses, pain, anxiety, nor depression I had before.

    I am about a year and a half off from my last injection.

  14. Linda Says:

    I had a 3 month shot of Lupron and it did not seem to help at all. I ended up with almost all of the worst symptoms. The joint pain makes it impossible to walk without a cain. I have managed to control my emotions and keep on working, but the emotional strain is exhausting. The hot flashes are severe. The insomnia sometimes reduces me to tears. My tumors are larger, and I require surgery. I believe Lupron is a terrible drug for some people, and should never be given the 1st time as a 3 month shot. I have had to ride this out because it was in my system these past three months and am hoping some of the side effects will go away.

  15. Lverduz Says:

    I feel your pain. I completely understand! After hemorrhaging twice, they found I have a few fibroids… some the size of apples and my uterus is so enlarged that the Dr. told me that since my kids where grown and I was 44…. That he would perform a hysterectomy. He said he was going to give me a shot to shrink them so the surgery would be so complicated. They gave me the 3 month shot. Never where the side effects explained to me and I was in such shock I didn’t ask questions either. For me… the memory loss and the shortness of breath are the worst systems. The depression/anxiety (which I never had before) has made me want to jump out of a moving vehicle. The hair loss and the continuous light to medium bleeding… I can live with. It did however stop me from bleeding out. I just went for a second opinion and SHE agrees that my uterus is too large and she told me they might not be able to do laparoscopic surgery if the uterus and fibroids do not shrink. She wasn’t so clinical and explained things in simple terms. I have one more month before my surgery and I pray this nightmare will be over. She did say that the side effects would take 3-6 months to be completely gone. I wish you and all the ladies the best.

  16. Chloe Says:

    Hi all

    I felt i needed to share my experience with all of you. I was diagonized with fibroid when i was 34 i.e 4 yrs ago. I do not have kids yet. They had become unbearable since they would bleed during and after sex so i got worried and had to be checked out. So my ob decided to perform a myomectomy which was done 2 years later to clear the way. It was quite successful thank God. After three months i conceived and later (after 12 wks) it was discovered to be a blighted ovum and had to be ‘washed off’ through a D&C. I later on tried concieving for a year but has not happened so my hubby and i decided that its the high time we consulted for an IVF treatment. After several tests it was revealed that one fibroid had grown back and something needed to be done before the procedure. Thats when the Lupron came in since i had already performed the mymectomy it was too much to make me go through another surgery. The doctor had told me that i will not be able to get my periods but hear this my periods came on time not a day late. Went on for seven days and stopped. Since the fibroid was not so large the doctor decided to shrink it first after the 3rd month they will establish how far it will have shrunk. I am hoping that it will have shrunk to the size that will be possible to perform an IVF. The side effects for the lupron are minimal ( i think i was expecting the worst). I am also taking another medicine called Evanova – by prescription from the same doctor to counteract the side effects of the lupron – Just the heat at nite and yes low libido. Has anyone out there been through this and did it shrink the fibroid?? and the IVF was it successful?

    Chloe


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