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Lupron injections at 3 mths post-info from anyone who has been on this plz! Lupron injections at 3 mths post-info from anyone who has been on this plz!

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  #1  
Unread 11-13-2001, 01:51 PM
Lupron injections at 3 mths post-info from anyone who has been on this plz!

Hey Ladies..I've tried to stay away for awhile, and quit bugging everyone, but now I have another question! My new gynecologist is going to start me on Lupron injections next week after we do some more hormone testing. This is for the pain, that all the doctors suspect is coming from my ovaries. Anyway, I haven't read too much about this, although I do intend to do a search after this post. My dr told me that it would take 2-3 weeks before we would know if my ovaries needed to come out. Apparently, if the pain quits then she know that she needs to get 'em out of there! My questions are these:

How are they going to make me feel?

Long term side-effects? (if any)

How long did your doctor say it would take to know if it worked?

Any other problems or concerns with it?

Thanks in advance for any help or advice - I'm getting a little nervous about this, not to mention I'M STILL IN PAIN!

Take care!

Stacey (TAH w/Burch and appendectomy) kept ovaries ( for now)
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  #2  
Unread 11-13-2001, 02:11 PM
Lupron injections at 3 mths post-info from anyone who has been on this plz!

Hi Stacey! I cannot imagine why you doc would put you on Lupron, but I have no medical knowledge so "who knows"!!!

I was put on Lupron about 18 months ago to give my Endo some relief. I had shots every month for 6 months. Side effects can be vary I think, but mine were: the most amazing hot flashes (sometimes one every hour for 6 hours), night sweats, joint pain and really bad short-term memory loss - but the pain from my Endo did stop, so I did not consider these such a bad tradeoff!

The shots can also cause some discomfort - swelling around the site (the fluid in the injection is quite thick), but it does subside.

Once you stop taking it though all the symptoms you had before usually return, mine did and some!!

My question then was why give it to me - when the end result was the same, it just delayed the inevitable. Lupron users have a site that you can go to - I don't recommend it, I looked after I had taken it and some of the posting were quite frightening.

I pray you make the right decision for yourself Stacey - you will know the right thing to do.

Love & hugs

Lynne
  #3  
Unread 11-13-2001, 02:32 PM
I have a good deal of experience with lurpon..

Lupron is a GNRH antagonist. That means that it essentially puts you into chemical menopause, so it's not permanent. There are others besides Lupron: Zoladex, Synaryl, Danocrine, and some others that I can't remember right now...I've been on all of them at one time or another. The longest I was on them was 9 consecutive months. I have to say that I don't regret it. Compared to the REAL thing (menopause) that was a walk in the park.

Basically, you will have menopausal symptoms (hot flashes, night sweats, mood swings, sagging breasts (but this will improve after you come off the drug), dry skin, lack of lubrication, dizziness (is possible), corsening of voice -- but again this should improve after you come off it....

Some people have had horrendous experiences with Lupron. I did not. It was a good thing for me because it was the least invasive procedure and bought me a couple of years before I had to have another surgery. It does not CURE endometriosis - it merely puts you into chemical menopause and stops the cycles that trigger endometriosis (or so they think).

If I had it to do over, I definately take it again.

Here's some info on it:
http://www.lupron.com/

You'll find terrifying sites out there about Lupron...you have to guage that with your own situation and what your doctor tells you.

For me, it was like getting a little taste of menopause before the real thing...for me, it was about one-one-hundreth of the misery that the REAL thing caused.

PS DO talk to your doc about taking cacium supplements and magnesium supplements while you're on this. I did, and I didn't have ANY bone loss. This was determined by a base line bone-density-scan and one that followed six months later.
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  #4  
Unread 11-13-2001, 02:35 PM
Lupron injections at 3 mths post-info from anyone who has been on this plz!

Dear Stacey,

First of all, you are NOT bugging us....that's what we are all here for...to support and share experiences K? So please post as often as you need/want to

My symptoms were much like Lynne's except I can add severe vomitting to the list I was to have 6 shots, but my bod could only handle 3 (because of the side effects). In fact I still suffer from some of the side effects and my last shot was in Dec/99! I also still get very tender where my old doc used to inject it. I too wish I had known it wasn't a 'cure.' My doc made it sound like it could be the end of the endo...but it wasn't. In fact, I had ZERO relief while on it...as well as bleeding for 20+ days straight with very bad cramping. As soon as I was off of it, the pain returned, within days. I also have Fibromyalgia now, and in my heart I know that is because of the Lupron...seems a little coincidental to me anyway.

I know it does offer relief for some women, but I'm wondering if there is another way your doc can determine whether or not your ovaries are the culprits to your pain. Have you tried using Progesterone? This maybe something to discuss with your doc.

Please feel free to e-mail me anytime if you want to know more. I can dig out my old journal, which has my "Adventures on Lupron" very well documented!

Sending you 'S and I'm sorry you are in so much pain...
  #5  
Unread 11-13-2001, 04:57 PM
Hey everyone!

Thank you all for your quick replies, and I appreciate all of the info that was offered!

Just wanted to come back in and let ya'll know that I do not, nor was I found to have, any endometriosis. This was why my dr decided to leave my ovaries in during the hyst. However, I have continued to have severe lower right sided pain, and sometimes it radiates to the left also. After about 6 doctors, and a second visit to the hospital, they've decided that my ovaries must be the culprit, but said the only definitive way to tell was to try the Lupron injections. I'm mostly curious about the time frame..how much longer will I have to suffer before this stuff kicks in? 2 weeks, 2 months??

I did a little research this afternoon, but it looks like most of it is concerning endo, which will do me no good! I couldn't find anything specifically referring to using it for isolated ovarian pain.
Have any of you heard of this usage before?

Thanks again for the help!

Stacey
  #6  
Unread 11-14-2001, 03:50 AM
Lupron injections at 3 mths post-info from anyone who has been on this plz!

Stacey Hi,

Lynne again. I would imagine that the reason your Doc is maybe considering Lupron for your problem is because it actually forces your body into menopause - therefore your poor old ovaries will get a break and not have to produce for the six or so months that the Lupron will be in your system.

I know once before in England, where I lived until I was 35, a doctor there prescribed continuous birth control pills for the pain problems I was having at that point to give my system a break. Maybe you could suggest that to your Doc as an alternative if you are still "gun-shy" of Lupron.

Please keep posting Stacey - I will be anxious to hear what happens - knowledge is power, but only when it is shared!

Much love

Lynne
  #7  
Unread 11-14-2001, 05:48 PM
Lupron injections at 3 mths post-info from anyone who has been on this plz!

Hmmmm, curious course of action they are taking. But you may get some answers. I too had severe RH side pain after my hyst, was still cycling to a degree but had pretty full on menopause symptoms. Unfortunately I had a dishonest, foolish surgeon too.
He placed me on Synarel (similar to lupron) but ignored my pain, deeming it to be 'in my head' and also ignored my obvious menopausal symptoms>i.e he had nothing whatsoever to do with this and no, I wasn't going through menopause, just suffering severe PMS! Funny, I never knew night sweats and hot flashes and vaginal dryness were related to PMS So I stayed on this Synarel (with an add back of .625 Premarin) for a total of 5 weeks. After which time I dumped the Synarel I can't really comment on what effect it had on me because I had the add back, so it alleviated most of my symptoms.
I sought out another opinion, once I got some well needed sleep and a new gyn did a laprascopic ovarian adhesion removal (it was stuck to my vaginal cuff :hair: ) and I also had a large cyst. Amazingly enough, although most of my pain was on the RH side it was the left ovary that was stuck. I have since found out it was referred pain (I think) because I have a scoliosis of the lower spine: it was stuck on left - pulling on right side). I kept both ovaries, but they quit anyway, which is what was going on seperate from the adhesion I feel.
The Lupron I guess will help you to discover if it's the actual hormone production (i.e the pain will cease once ovaries are dormant) or whether there is an adhesion(pain would persist but may be less). Good luck
  #8  
Unread 11-14-2001, 08:53 PM
My Lupron experience

Wow - first of all, I just want to wish you well with this. I really hope you get some relief. Here's my humble experience: I was on Lupron for 6 months in 1993 and on Zolodex (works the same) in 1995. I had some of the same side effects as others here, hot flashes (I kind of enjoyed them - I prefer calling them power surges!), insomnia, anxiety, weight loss (hallelujah - I got down to 103 lbs., just didn't want to eat), hair thinning, and my breasts got a little smaller - but that could have been from the weight loss. I have some residual joint pain that MAY be from the Lupron, depending on who I talk to, but it's not too bad. I do not think I had any significant bone loss (which can be a side effect) because I've had some interesting accidents (I'm a klutz) since then and no breaks. But I got amazing pain relief! Once I got my first shot, the pain actually got better before it got worse. The first month was bad - 2 vicoden every 4 hours. My said it can cause a surge of estrogen before it stops, so that's what happened to me. But then the pain was just gone. I felt great! I would do it again in a heartbeat but my doc won't prescribe them again because of the risk of bone loss. She put me on Provera in June and I have had no relief from that, so I enter the castle December 11!
  #9  
Unread 11-15-2001, 04:47 AM
Lupron injections at 3 mths post-info from anyone who has been on this plz!

Hey there! Thanks again for everyone's help! In answer to the BC therapy, I've already gone through that , and it was no help whatsoever - So far, the only thing I've found that helps is a drug called Neurontin. This is a nerve blocker (Commonly used for epilepsy) and apparently it just stops my brain from sending the pain signals to my lower region. It doesn't take away all of it, but it does do enough that I'm able to get some of my normal life back! I've thrown away the other pain meds, because even morphine shots haven't helped at all...I do know that I can't live taking this new stuff for long, because it makes me really odd - just sort of detached and in a fog, and my fingers don't seem to obey the commands during typing or even writing my name - you wouldn't believe how SLOPPY my signature is now! Sometimes I feel as if I've had a stroke on top of everything else.

I'm relieved by some of the responses from ladies who have gotten some degree of relief from the Lupron. This is what I'm hoping for, and if it does take away the pain, then my new gyn will go back in and remove the ovaries...thank God! I'm ready to get these suckers outta there; I can't bear this much longer, and I can't imagine that a few more meno problems could possibly be as bad as living with this constant pain. I saw a post from a lady relating her symptoms to pregnancy...this is a lot like how I feel! Lots of pressure down low, severe cramps, just like labor

Anyway, I'll quit rambling now! Thanks again for all the help - you all have been my saving grace, and I don't know what I would do if I couldn't come here and get this kind of support.

Stacey
  #10  
Unread 11-15-2001, 04:53 AM
Oh, by the way..

Annie, I'm sorry that you have had to go through this.

You told me exactly what I needed to know regarding the time frame it might take for this to be effective. I'm so glad, at least this way I won't be quite so negative when it doesn't help (or even worsens!) during the first month.

I know you probably are anxious about having surgery again, but I'm so glad that someone is going in there to try and help you. I will be thinking about you, and wishing you the very best as you go to the castle again! Hang in there, and keep us posted please!

Stacey
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