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LUPRON: Thought, Comments LUPRON: Thought, Comments

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Unread 01-25-2002, 08:02 PM
LUPRON: Thought, Comments

I didn't mean to scare anybody - just to suggest something you should ask your doctor about. Especially if you have other risk factors for osteoporosis. There are (I think) things you and your doctor can do to reduce your risk of bone loss. I believe that taking extra calcium, exercising, and (I think) "add back therapy" (???) can help. But that's where the "ask your doctor" part comes in.

I know nobody takes Lupron who doesn't really need to - just if you have to take it, see if you can do anything to avoid some of the risk.

Here's a web site that lists some risk factors for osteoporosis:

"Family or medical history, diet and life-style all play a role in determining our risk of osteoporosis. Some of these risk factors include:

Age—older bones are less dense
Sex—women have a greater chance of developing osteoporosis
Race—Asians are more likely to develop osteoporosis
Bone structure and weight—being small-boned, petite and thin is a risk factor
Diet—a factor if the diet is low in calcium and vitamin D
Lifestyle—lack of exercise, smoking, alcohol consumption
Family history
Certain medications or diseases "
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Unread 01-25-2002, 08:48 PM
LUPRON: Thought, Comments

I had a very positive experience with Lupron, and I've had three different courses each lasting at least six months (monthly shots). I felt better than ever on the medication -- no pain or break-through bleeding. I did not experience any noticable side effects. Unfortunately, my symptoms appeared again as soon as my period returned (which was approx 2 months after last shot). Apparently this med is not good to take long term -- if I could, I would keep taking it. I don't know if age has any correlation with side effects, but I am 35 now, and have been on and off Lupron for the last 3 yrs. Good luck! Holly
Unread 01-25-2002, 11:27 PM
Lupron The Drug From HE_ _ !!!!


I HATE this drug. Dr's dispense it without fully informing you of just how miserable you can be. I had two six month doses in my life. I was desperate to keep my uterus long enough to have children. The side effects were HORRENDOUS. I know everyone is different but I know too many women that have had a terrible reaction to this drug. Please be fully informed of all of the risks and side effects so you know exactly what you are in for.

Good Luck,

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Unread 01-26-2002, 01:19 AM
worst case ever

I dont want to scare you but I thought I should put my story on here for you to use as a tool in making your decision. I read some of the other posts and as horsewomen noted the sight is very informative. I am a member of it. I went on the lupron six month treatment for the severe endo after a diagnostic lap procedure. I was excited and did not know any thing of the after affects. The first shot went ok. My hip hurt for days but not much that first week. Then the horrible mood swings, sitting in a corner crying for no reason and then minutes later yelling at everyone I know. I got my period a few weeks into it and it was just as painful as any other one I have had. I am still looking foward to it so I do the second shot and again it went ok except for a hip pain. A few days later the horror started. My bottom lip swelled. I didnt' put two and two together. Thought maybe I bit it with out knowing. The next day top lip swelled bottom one went down. But by the end of the day both were swelled and so was my face. I called the doc and was told that since it was my second shot it was probably not related. I made the mistake of calling my primary doc instead of my gyn. He said come in in the morning. I went to bed or tried to. In the night my heart started weird racing stuff. My head was throbbing My eyes turned black and blue. I looked like the kid from Good Times. My 30th birthday was coming up. I went to the doc and passed out in the waiting room. They did an ekg and all in the office. My blood pressure was 189/126 I went straight to the hospital from there and had to spend the night on some powerful steriods. Still this doc says he doesnt know what caused it. I was sent to an allergist who had me on 17 different meds at one time. Ok no period that month but at the time my period was due I had all the pain with no blood. My gyn felt sorry for my problems but talking to my primary doc he assumed it was not the shot. I took the third shot. I was still on so many different meds that nothing bad happened and my period never came. The mood swings were still so very bad. I was turning everyone I know against me. I had night sweats that well it looked like I had went swimming in bed. The hot flashes were so bad that I wound up in front of the fan naked more often then not. The memory loss was so irritating. I couldn't keep anything going with my own body straight much less things going on around me. But I didn't have any period pain. I wasnt' sure what was causing all of my problems remember I was on 17 different meds two of them steriods. I took the fourth shot after weaning on the steriods. I was almost completly off of them and then that shot. Before the night came I was all swollen again and back in the hospital and back on the steriods. I didn't take the shot again. My gyn was called and we did a wait and see. I did not get a period till 6 weeks after the I was due for the 5 shot. I did not hurt during that time and I was glad. The night sweats and mood swings and hot flashes and all got better but my hair started to fall out. I still had trouble remember things and I was at that time down to 2 meds a day. Heart pills and blood pressure pills. ( I was on none before the lupron) My first period after lupron was worse then ever and only got worse till my lavh/bso on dec 18. I had my first shot of lupron may 2001. Please think long and hard. Everyone is different and alot of woman have had help before. One suggestion to talk to doc about. A friend of mine was told she needed to take the lupron and after my experience didn't want to so her doc gave her birth control pills she skipped the suger ones and started the next pack with out ever getting her period and she is doing great. Good luck. Sassy s to you
Unread 01-26-2002, 03:12 AM
just back from the castle

hi allie,
i just got home from the castle last night; so if i don't make a lot of sense, that's why. but i just had to tell you my experience with lupron. in a previous post i said that i'd had a lot of side effects, none of them unbearable; and that if the lupron had made the surgery any safer that i'd be glad i took it. well, talked to the doc yesterday morning after surgery, and seems that for me anyway, the lupron worked great. it reduced the size of my uterous from 21 week to 14 week size, and reduced the size of the tumor to about 50% of what it had been. i only took lupron for 2 months, and can tell that the side effects are starting to wear off. so, for me it was a good thing. good luck; and i'm back to bed. eva
Unread 01-26-2002, 04:03 PM
LUPRON: Thought, Comments

Well there have certainly been a lot of responses on the pros and cons of Lupron here, many good AND bad experiences.

I agree that everyone should be informed about the side effects and potential dangers of ANY drug they are prescribed. My best friend and my mother both died because of pharmaceuticals. So if anyone knows what drugs can do, I do.

I have to wonder what kind of doctor prescribes a drug without reading the physician information about it, and without letting a patient know what to expect. It sounds like the majority of ladies who had a bad experience with Lupron had bad doctors. grrrrrrrr, and for this they get the big bucks.

I can't take any kind of birth control pills because of migraines. Even the progestin I'm taking with the Lupron had to be cut in half because it triggered headaches. And surgery is just far to risky until the fibroid has shrunk to a more manageable size.

I look at it this way - if I had cancer, I would do chemo, radiation, surgery, anything that might help. Chemo drugs are known for awful side effects. No, I'm not equating my health problems with cancer. But, if I die from a massive bleed or organ failure from blood counts and blood pressure that go to low, I'm still dead, and my daughter still doesn't have a mother. So I am doing everything I can to get my health back.

So far I haven't had any major side effects from the Lupron, that I know of. I have yet to take my second injection (2/7). Maybe I will have side effects, maybe not. I just have to hope if I do, they aren't too horrible. I only want to get to the point where I can get my surgery date and get all of this behind me once and for all.

Best of luck to all. We all just do what we have to do to get where we want to go!
Unread 01-26-2002, 04:56 PM
LUPRON: Thought, Comments

After reading all the posts, I can tell this is a very controversial drug. If you read the common thread in all of them, though, it seems like the longer duration shot (3 month) and the 2nd monthly shot of the 3.25 mg type seem to be where the trouble starts. As I said, one month of it has been great for me. I'm not sure I would have agreed to the three month shot, but maybe if I had, I'd be suffering some side effects. Have you researched other treatments for your fibroid besides hysterectomy? As a fibroid sister whose main complaint is low blood count, you may be a good candidate. I am AFRAID of surgery, so I'm going to try it. Good luck with the Lupron decision.
Unread 01-26-2002, 05:42 PM
LUPRON: Thought, Comments

I used Lupon for a huge fibroid and was really hopefully that it would shrink the fibroid to a more manageable size. However, after three months of injections, hotflashes, memory loss, and severe headaches, I discovered that it had done nothing.

I had originally thought about having surgery and skipping the injections. I wish I would have done that.

Everytime I stand in front of my class and my mind goes blank or I forget something someone just told me I get frustrated and think about the medicine that did nothing.

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