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LUPRON: Thought, Comments LUPRON: Thought, Comments

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  #1  
Unread 01-23-2002, 09:33 PM
LUPRON: Thought, Comments

Hell Ladies,
It's been 6 months since I had to postpone my orginal surgery date(For fibroids, endo,heavy bleeding and PAIN!) and in that time my orginal fibroids have gotten a little bigger They have invited a new friend to join them and I my periods have been UNBELIEVABLE:devil: causing my blood count drop and I had to have a transfusion:cry:
My doctorss new plan of action is to have me take 2 rounds of LUPRON (Two 3 month shots) to stop my periodds and let my body build up it's blood supply, and on the 2nd month of the 2nd round of LUPRON it's: OFF TO THE CASTLE I GO!!
I have read some of the post about LUPRON and I have read some of the side effects: the main ones being the Hot Flashes and the Night Sweats. I know that eveyone is different, but, what else might I expect?
My Doctor said that she would give me a patch to counteract any side effects because the main goal is to stop the periods and not so much shrink the fibroids.
I would LOVE to hear from anyone who has taken the LUPRON and learn what your experience with it was like.

Thanks in advance for all your help,
Allie
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  #2  
Unread 01-23-2002, 11:33 PM
LUPRON: Thought, Comments

Hello

I took lupron for 4 months. I don't want to sound negative, but I was not told of the possible side effects and I had so many. It was a pretty bad experience for me. It did take away my pain and bleeding...that was a major plus. BUT I had side effects like hotflashes(I could deal with that). The really bad side effects were a racing heart beat(very scary), severe dizziness and faintness and facial hair growth

I know that the tachycardia(racing heart) is a pretty rare side effect, but it was a horrible side effect. Make sure you know what the possible side effects are so you can report them to your doctor right away. I'm assuming that you are talking about add back therapy when you talk about the patch. I took Premarin for the side effects. It helped, but made the pain come back.

Oh yeah, another side effect I had was short term memory loss. :frazzeled:

I know that alot of women have very positive experiences with Lupron. I am one of the unlucky ones that did not. Hopefully you will. You don't know how you will react to Lupron until you try it. Good luck. I'm sure you'll be fine.


By the way...I've heard from so many people that their side effects didn't go away after stopping Lupron. Mine were completely gone as soon as the medication was out of my system.
  #3  
Unread 01-24-2002, 01:55 AM
LUPRON: Thought, Comments

hi allie,
i've been on lupron for a little over 2 months to shrink a couple large tumors, so no add back therapy for this girl. i had a lot of side effects; hot flashes, joint stiffness, deepening of my voice, mood swings, fatigue, and my very favorite-- short term memory loss. i can't seem to remember what i'm doing these days. but then that could be stress too. to me, it seemed that the longer i was on the lupron, the stronger the side effects became, don't know if that's normal or not. everyone is different. none of the side effects were unbearable. i did start to feel a little pain releif the last few weeks. and since i'm heading to the castle tomorrow i'll find out if it shrunk the tumor soon. if it did what it's supposed to do and makes surgery any easier or safer; then it will be well worth it to me. it's been a little over 5 weeks since my last monthly injection, and i can tell the hot flashes have eased up a bit, so i'm assuming the effects are starting to slowly deminish. good luck with whatever you decide. eva
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  #4  
Unread 01-24-2002, 07:54 AM
I too had LUPRON

Hello Allie,
Before I start, KEEP REMEMBERING...EVERYBODY IS UNIQUE,you'll never know how your body will react to it. Just like DH said "I got all the side effects and not the benefits from it".When I received my first shot (only scheduled for 3 shots) I immediately feel this tightness on my right leg (where I got the shot on rear)and some discomfort behind my R knee on my way out the door. Then the discomfort just got worst,it feels like my vein is going to bust that I had to lay down and prop-up my feet. Hotflashes and slight mood swings came along(DH said I was handling it pretty well)
Bleeding has not totally stopped I had a break for a week. Then came the 2nd shot, WELL... here comes the problems, same leg problems after the shot(w/c lasts for close to a week)hotflashes that feels like both my ears and upper body is on fire that wakes me up at night and anytime of day, headaches(shooting like pain on the same area,lasts for a few minutes),bad mood swings, ringing both ears(constant, don't know if related),joint pains, slight change in vision,fatigue,short memory loss,slight stuttering if I am in a long conversation,stiffness,palpitations(or rapid,heavy heartbeats)that will stop me from talking,STILL DID'NT STOP BLEEDING (with heavy clots)finally the DR. said NO MORE SHOTS 4ME (2wks. after my first shot) I am now sheduled for FEB.5 at the castle to take over my throne. JUST LIKE WHAT I SAID "EVERYBODY IS UNIQUE" YOU MAY NOT GET THIS PROBLEMS I HAD. GOOD LUCK!!! DO WHATEVER YOU THINK IS BEST FOR YOU!!!
  #5  
Unread 01-24-2002, 05:47 PM
LUPRON: Thought, Comments

Hi Allie -

My first experience with Lupron was Lupron Depot 3.75 shots for six months. Can you believe I started to get my period after the 3rd shot? (the gals at my 20th high school reunion said I should have been voted "most likely to menstruate")! I didn't have any side effects at that time except pain at the site of the shot (the nurse switched hips/sides of butt each month) - but I didn't have much in the way of advantages either. Had add back therapy (prempro then deprovera). The Lupron did not help my endometriosis at all. My doctor at the time - an extremely well respected reproductive endocrinologist in Boston was very puzzled and surprised at my lack of results.

Later I had 3 months of Lupron Depot 7.50 -- double whammy.
I had wicked hot flashes that I learned to live with, some joint pain and short term memory loss -- I still have memory loss but not convinced entirely due to Lupron. But I didn't bleed or have pain for 3 months either. (this was all in prep for a myomectomy - my surgeon wanted a clear field).

My 2nd experience with Lupron made me choose a hysterectomy 2 years afterwards (at this point I was struggling with fibroids again and endometriosis) -- I decided if I could feel as good as I did on Lupron - despite the side effects - my quality of life would be much better with a hysterectomy.

There is a ton of stuff on the web about Lupron - pro's and con's. But just like researching a hysterectomy - you'll find lots more negatives than positives which I found extremely depressing until I stumbled onto this site. Except for hystersisters, I think people are more apt to speak loudly and publicize when a bad thing happens than when something positive occurs. Thank goodness for all the positive posts here at hystersisters!!

You are very smart to reach out to people for their experience with Lupron - it's such a personal decision. Would I do it over again? Hard to say - but I am glad it gave me at least a 3 month preview of what life might be like without the pain -- IF I had to do it all over I wish I had a hysterectomy earlier without going through ten years of additional pain, non-effective surgeries and treatments.

Best of luck with your decision,

Leslie
  #6  
Unread 01-24-2002, 05:55 PM
LUPRON: Thought, Comments

Lupron is a VERY hard drug to take, as you can see here! To find more information, try running a search using our search engine (little purple button at the top right of each page). You will turn up many threads discussing the pro's and con's and side effects and "effectiveness" of this drug.

Good luck!!!

Karen
  #7  
Unread 01-24-2002, 06:24 PM
LUPRON: Thought, Comments

I had 6 Lupron injections prior to my tah/bso 12/21/01. Goal was to try and clear up some of the endo(severe) before surgery. I guess I am one of the lucky women who do very well with Lupron. I had no hot flashes, night sweats, etc. Had my last period 2 weeks after the first injection. I did take norethindrone(progestin) for the entire six months as well, so whether or not this had anything to do with my lack of side effects I don't know. I kept waiting for ugly things to happen, but they never did!!! Most important, the Lupron did clear up alot of the endo growths making it much easier & safer for my Dr. to do the surgery. This is just my experience, but thought I'd share a positive light on Lupron!!
  #8  
Unread 01-24-2002, 06:51 PM
LUPRON: Thought, Comments

So here is a question to think about..... what if you tell your doctor you DONT WANT the Lupron shots.. you want to go straight to hysterectomy... wonder what would happen??? I just cant see going through more months of misery getting shots that may make me feel WORSE.
  #9  
Unread 01-24-2002, 07:08 PM
LUPRON: Thought, Comments

I have no personal experience with Lupron but here's something to consider...

Be sure to look into, and discuss with your doctor, the risk of osteoporosis with Lupron. That's the thing that scared the wits out of me. I told my doctor I flat out would not consider taking it.

Here's a site that has lots of good info on Lupron (good and bad), including the osteoporosis thing:
http://www.poetsrx.com/products/lupron/lupron375/

A negative site, but you might want to check it out:
http://www.lupronvictims.com/bone.html

And a site about treating endo:
http://www.endometriosis-center.com/...treatment.html
This site says the FDA has approved Lupron for use only 6 months in a lifetime due to the risk of osteoporosis.

So that's my big fear about it. You can get over the hot sweats, but I'm pretty sure any loss of bone mass is permanent.
  #10  
Unread 01-24-2002, 08:07 PM
I don't have a choice!

I am on a three month course of Lupron, and at this point it is a life saving measure. I have an anterior intramural fibroid measuring 10x10.5x11.5 cm, or approximately the size of a 5-mo. pregnancy. I have had seven years of progressively worse bleeding, then hemmorhaging every month for the past two years. I went into the hospital on 1/9 for an emegency blood transfusion after massive hemmorhaging. My hemoglobin was 4. My hematocrit was 14. My BP was 70/30. If I hadn't gotten to the hospital I could have died.

SOMETHING has to be done to completely stop the bleeding, and hopefully to shrink the fibroid and thin out the endometrial tissue. Before I can even consider surgery, I have to have a chance to build up my blood and strength again. And with a fibroid that size, the risks of massive bleeding during surgery are high.

I am well informed about the risks and side effects associated with this drug, and the last thing I need is to scare myself out of doing something that will probably save my life, so I'm staying away from all the anti-Lupron info on the internet (there's a lot of it). I guess my point is, depending on your situation, three months of uncomfortable side effects might not be a bad trade-off if it allows you to improve your overall health and chances for a positive surgical experience.
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