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Old 06-06-2003, 02:43 PM   #1
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Red face Has anyone had a GOOD Lupron experience???

I swear, I have yet to hear Lupron and good in the same sentence! I've read the ton of bad experiences on here but does anyone have anything positive to say? Did everyone gain weight, lose their hair, and throw up 10 times a day? It just doesn't sound like the side effects would be worth it to me but I understand for some, it must be done.

Also, where do they give you the shot?



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"He that studieth revenge keepeth his own wounds green, which otherwise would heal and do well." John Milton

 
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Old 06-06-2003, 06:13 PM   #2
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My experience hasn't been as bad as most, I guess. I haven't lost hair, and I have actually lost weight. When I started add back therapy, the vomiting and headaches stopped. However, overall, the experience has really sucked. I have had mood swings, and depression, and overall, just feeling really lousy. I can't remeber the last time I felt good. Of course, before the lupron, I had a lot of pain from the endo. I am now thinking of getting the hysterectomy.

Why did I go on this? I didn't know how bad it would be, and I was promised long term pain relief. My pain recently came back, after I started a different add back therapy.

I don't know about anyone else, but I get the shot in my butt.

Are you thinking of taking it, or just questioning our judgment?

[This message has been edited by jessilynn68 (edited 06-06-2003).]

 
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Old 06-06-2003, 09:29 PM   #3
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That sounds like a horrible experience to me. Once you started the estrogen add back therapy the vomiting stopped? I know my doctor keeps trying to get me to have a lupron shot and there is just no way I ever will. The problem with it is it's only temporary. Whats the point if all of the symptoms come back when the shot wears off? The vomiting sounds horrible. I hope you are starting to feel better. I feel really bad for you. I have had constant spotting and bleeding from taking birth control pills but no pain recently. That is what makes me not want to go to the doctor. Each time I go in there he brings up the Lupron thing and I am not a person to just sit there and do whatever the doctor wants so I always say no but it still bothers me. He kindof laughed one time about how Lupron is looked upon on the internet as being so negative that there is actually a victims network on here. I hadn't known about that and it confirmed my decision not to take it. He was the one who brought up the victims network online.

 
Old 06-06-2003, 11:40 PM   #4
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Talking

I have been given the choice of trying Lupron or going ahead and having a hysterectomy, that's why I was asking. Thank you guys!

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Old 06-07-2003, 01:31 AM   #5
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was on lupron for 2 Ĺ years at almost twice the dose. I donít know if that is what gave me such horrible side effects or if Lupron would have done that in general. I can say that it DID make the pain GO AWAY!! Finally!!!!! At least it gave me a 2 year break from pelvic pain. My side effects included weight gain, hair loss, headaches, hot flashes, mood swings, depression, and memory loss. Again, itís really only meant to be one shot for 6 months. I was given 1 Ĺ shots for 2 Ĺ years. I had my last shot in March and have yet to get a period = no pain yet either. Itís definitely not a drug to be taken lightly. To answer how itís given....A shot in your backside! It doesnít hurt usually. However, a time or two it did but I think that depends more on the nurse administering it. Good luck with what ever you decide.

 
Old 06-07-2003, 06:29 AM   #6
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Hi everybody -

Yes, once I started the add back therapy the vomiting stopped, as did the horrible headaches. However, I started on progesterine only add back therapy, but it didn't stop the hot flashes, so the doc put me on the estrogen/prog combo. It hasn't really changed much. I wake up drenched in sweat, as does my boyfriend, if he is sleeping anywhere close to me. Not much of a romantic experience, I tell ya. Also, once I added the estrogen, the pain has come back.

I did read about the lupron victims website. And its interesting - a cousin of mine has prostate and bone cancer, and they put him on lupron to help aid the chemo and radiation. That kind of opened my eyes - this drug also kills cancer cells??? What is it doing to my body? I don't know - its such a tough call. Hysterectomy is sooo permanent, and I don't have any kids. Now, I am 34, and likely won't have any anyway, but it is the only thing holding me back from it. I am sure if I had kids I would have already had everything taken out, and been happy about it.

Good luck to everyone making this horrible decision.

 
Old 06-09-2003, 08:20 AM   #7
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The shot is *supposed* to help the pain long term... by not getting your period, you give the spots they zapped during your lap. time to heal and shrink. whenever you get your period, the spots of endo bleed and then heal, next period they bleed and then heal (sometimes you can bleed in b/w periods too) and each time they heal they cause more scar tissue. so not getting your period, along with stopping pain for a certain amount of time, allows the endo to *hopefully* heal. (someone correct me if i am wrong)

I just talked to my DR the other day about add-back therapy, and she said if I start having bad problems then we can try it.

I haven't been on the shot long enough to experience any side effects yet - I got a headache the day after I got my shot, but then got my period the next day so that was probably why.

I am on anti-depressants and both my drs (I really have 2, one I see when I am at school and one I see when at home and who did my lap) say as far as mood swings go, I should be fine. Maybe you should talk to your dr beforehand about trying out some antidepressants and finding one good for you before you take the shot, if you get it?

I think I can handle hot flashes and the mood swings... I am worried about things like memory loss? What exactly is that like? Am I going to wake up tomorrow and not remember what happened today, or is it more of a "dang, where did I put the remote??" type thing?

I'll keep updating my progress on the other thread, but as of now, things are ok.

 
Old 06-09-2003, 08:37 AM   #8
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Dolphin Diva-

Why did your doctor only give you those two options? Have you tried excision surgery? Nothing is a cure for endo, not Lupron, not hysterectomy, nothing. There are a lot of other options out there. My advice to you would be to research, research, research! A hysterectomy is a huge step when it's not guaranteed that you are going to feel better, or stop the endo from growing.

Just my 2cents :-)

 
Old 06-09-2003, 08:59 AM   #9
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Hi Jules -

The memory loss is less than not remembering yesterday, and more than not remembering where the remote is. For me, I forget things I have told people, some parts of conversations, forget deadlines at work (I am getting into real trouble for this one), misplace things, feel confused a lot of the time cause because of what I am forgetting. I am thinking of going off the lupron, and am thinking of trying life with as its supposed to be - med free. I have been on meds for so long that I am a bit scared of going off all of them, but as my boyfriend said this morning - I am possessed by Lupron and other meds. I don't mean to scare anyone - I am just going through a horrible time and have some huge decisions to make. Good luck!

 
Old 06-09-2003, 02:28 PM   #10
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How soon do the side effects start?

I understand about not wanting to be on medicine. I guess I wanted to try the lupron because my endo is severe and it is worth trying it. my dr said that the side effects may be bad, but in the long run it will be worth it. i hope she is right.

I just don't want forget who I am and what it is like to live a normal life!!!!

 
Old 06-09-2003, 03:14 PM   #11
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Hi there,

I have been on Lupron for 3 months now, and it isn't horrible. I did gain about 7 lbs, which I will be able to lose pretty quickly. I do have hot flashes, sometimes very severe, but I am now taking Effexor to alleviate the hot flashes and it really does help a great deal. All of the SSRIs like Paxil and Zoloft do the same thing. The first month I was on Lupron I had horrible back pain for 10 days, but that went away and I haven't experienced it since.

Are hot flashes fun? No, but I'll put up with them if it means that I won't have a recurrence of cancer!

My side effects started exactly 14 days after my first injection.

[This message has been edited by Kalie (edited 06-09-2003).]

 
Old 06-09-2003, 04:47 PM   #12
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Hi kalie -

If I were taking Lupron for cancer, I sure as hell would continue it,too. Fortunately, I take it for endo. What kind of cancer do you have?

I also take atenelol for mitral valve prolaspe, allegra for allergies, calcium (ohhh did anyone tell ya all this??) for bone mass that Lupron depletes, effexor, ambien to sleep. It has taken control over all aspects of my life, and I am done.

My side effects started exactly one day 14, too.

 
Old 06-10-2003, 07:58 AM   #13
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I am on my 2nd injection......

So far, so good for me. My only symptoms include being hot for long periods of time (not actual hot flashes). But I am also taking Aygestin to help any symptoms of menopause. I am under a lot of stress at work, so that isn't helping I imagine.
My only other complaint is occasional muscle cramping, but I don't even know if that is related to the Lupron. (I posted that very question on this board)

Again, I am only on my 2nd injection.

 
Old 07-07-2003, 05:59 AM   #14
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I've been on Lupron for 3 months. I just had my 4th shot. Since I'm on the road all summer, I do my own shots---a little iffy, and sometimes outchy, but seems to work OK.
I'm taking it with 5 mgs. progesterone. My symptoms are hot flashes and occasional sweats, uncomfortable but not debilitating. I recently went on a diet and exercised like a feind for about 3 weeks (cycling 20 to 40 miles a day plus walking several miles). Losing weight is very hard on this, but not impossible. I did lose a few lbs. Now I'm suffering from aching joints all over. I don't know if it's the exercise or bone loss from the Lupron or both. I try to take 1500 mgs. of calcium daily as my doctor ordered.
I am kind of moody and cranky, but I'm also more productive and driven.
I don't have the same joyful appreciation of life without the estrogen, but I'm actually doing pretty well and have a good outlook.
Any side effects I have are small potatoes compared to the daily hemmorhaging and extreme pain I had for 3 years.
I would recommend Lupron any day for a 6 month period, except of course, different women have different reactions to it.
Naturally you have to find a more permanent solution eventually. I have a myomectomy scheduled, plus I'm thinking of trying the pill (and perhaps even using it to prevent periods---frankly I've had enough menstruation for several lifetimes).
In short, Lupron temporarily cures the problems caused by excess estrogen, and the side effects aren't such a big deal. Then again, I might be afraid to take it long term. I have to see if my joints continue to ache, or if it's just because I really overdid the exercise (after barely working out for years).
Katya
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Old 07-08-2003, 09:05 AM   #15
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I took Lupron 2 separate times, but to be an egg donor, not for an actual medical condition. Each time I took it for about 3 weeks, 10cc per day. Luckily, I didn't really have any side effects at all except for nausea for the first couple days. I was amazed to learn, however, that Lupron can be given to induce male medical castration.

 
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