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Re: Lupron month 2 update - my experience so farFrom: TRISHA (anonymous@obgyn.net)Fri Jul 29 14:52:01 2005
At Mon, 25 Jul 2005, Tia wrote: >HI GIRLS I AM IN MY SECOND MONTH ON LUPRON WITH ADD BACK ESTROGEN. I AM TIRED ESPECIALLY LATE IN THE EVENING, BLOATED AND STILL SUFFER FROM CONSTIPATION. MY ENDO WAS DEEP IN MY PELVIS AND HAD ATTACHED PART OF MY BOWELS TO MY ABDOMINAL WALL. I HAVE NOT HAD A PERIOD SINCE STARTED. I ALSO HAVE NO APPETITE BUT TODAY TERRIBLE ABDOMINAL BLOATING. >Lori Anna, > >I can totally relate to your story. Your experience on the lupron was >the same for me. I had the flashes bad (still have them one month off >treatment) >The mood swings were horrible and I did feel depressed. I just moped or >slept. >I was and still kind of am always tired. I was bleeding too the 2nd >week and bled three weeks after my last shot. >It was horrible. I had all the side effects and the add back therapy >made me more sick. So I was told to stop it and I felt a bit better. >It helped a bit with the pelvic pain but not with everything else. >My stomach couldn't handle food and was always upset. I am still >getting over that as well. >I don't know how long it takes for lupron to leave your system but I >will be glad when it does. >You are not alone and I am glad you are writing it down. I wish i did. >I am around if you want to talk >Tia > >At Wed, 20 Jul 2005, Lori wrote: >> >>Hi everyone, >>This is not a horror story. So far. And it's not a fairy tale either. >> >>I'm halfway through my second month on Lupron with Aygestin. Like many >>of you, I still worry what is down the road, what will happen to me >>following my third to sixth injections. And I do feel a little like a >>science project. Watching TV tonight, I poked into my belly below my >>laparoscopy scars to see if I could feel what is going on inside me. We >>are more scared of things that we can't see or perceive to be out of our >>control. Once the nurse has given the shot, there is maybe nothing I >>can do to affect or even know what the Lupron is doing to my >>endometriosis and body. >> >>The reason for this post is first, personally, to document what is >>happening to me since I so often forget to write these things down, and >>second, to give a story for potential Lupron users to help make a >>decision about the drug. When I was researching my options, I became >>very aware that people who have positive experiences with a drug are >>much less likely to write about it in a forum. It is those who have >>negative experiences who seem to write to these websites. Fortunately >>or unfortunately - depending on your stand on taking risks with possibly >>helpful drugs - the bad seems to override the good on endometriosis >>forums. >> >>I started Lupron at age 26, on May 26, 2005, two months following >>surgery to remove ovarian cysts and endometrial lesions that were, >>according to my doctor, all over my abdomen and wrapped around my bowel. >>This was no surprise to me - my pain had already told me something was >>wrong, screamed it at me at least five days a month and many times >>during sex. In March, my doctor said I needed Lupron to get rid of what >>she couldn't get without a bowel resection. >> >>Lupron scared me - the stories of bone loss and permanent, debilitating >>joint pain. I said, no way, there must be something else. I read about >>alternative approaches and quit coffee and stopped eating wheat. I took >>supplements. But, I wondered, how do I know? >> >>April. I stressed over what to do. Finally I brought my case to a >>reproductive endocrinologist at Duke University. I said I am really >>sensitive to hormones. I am afraid of messing with my pituitary gland >>function. I don't like the idea of taking away and then throwing more >>hormones back at my body. I didn't like the Lupron horror stories. I >>wasn't going to take it, what could I do? >> >>The Duke doctor seemed remarkably confident. He even said I had an >>clear case. He told me that I really needed hormonal therapy, that I >>was playing with fire and that if I really wanted to get better and keep >>up my chances of having a child, I needed to do this. Now. >> >>Then he suggested that if I didn't want Lupron to take Danazol. He said >>I would do great on it, I'd love it - as he wrote the prescription. I >>went in for a second opinion and came out thinking I had a better >>option, with a prescription. So I did a little research and decided >>that maybe growing facial hair was better than the remote-but infinitely >>scarier- risk of losing my way of life to permanent pain. So I started >>on Danazol. >> >>Two weeks on it, and the only side effect I noticed was that my sex >>drive went up, way up. Then I had my 6 week post surgery checkup with >>my first doctor, and she was stunned at the Danazol decision. I would >>have a really big risk of getting facial hair, a deepening voice, and an >>enlarged clitoris. Danazol is top of the line for side-effects and she >>didn't know anyone at UNC who still prescribed it. I left that >>appointment very confused and feeling like my doctor was hurt that I >>went to someone else. I did a lot more researching and soul-searching >>and finally decided to stop Danazol and go for Lupron with add-back >>therapy. >> >>Weeks 1 and 2. I was terribly bloated and constipated. Finally I >>couldn't stand it and started drinking coffee again, and that helped. >>But I'm not sure if it was the coffee or the 2 week mark that made the >>change, because for the first 2 weeks of Lupron, estrogen actually >>climbs in your system before dropping off. It also supposedly takes >>time for your body to get used to the add-back estrogen. >> >>Week 3. I started bleeding. Oh crap, I thought, this was supposed to >>end. The pain came on quickly and unexpectedly and the first night I >>woke at 3 so stunned by it that I found myself taking a ibuprofen with >>codeine and a phenegran (given for post-surgery nausea) to sedate me, >>which worked pretty well. I took the codeine for the next few days and >>was totally out of it. I was a space cadet. >> >>Week 4. The bleeding stopped and I also forgot to make my second >>appointment for Lupron. I had the date a week back in my head because I >>was overwhelmed by work. So my second shot wasn't until July 6. >> >>Month 2, week 1. I think I may have been getting hot flashes, but it is >>also really hot where I am, in North Carolina, and we keep our air >>conditioning low. Sometimes I wake sweaty and sometimes I get really >>hot when eating warm food, but whether or not these are flashes they are >>bearable. I have no headaches. I am tired a lot. This week I find >>myself needing an afternoon nap nearly every day at 3. Luckily, my >>schedule as a grad student allows naps! >> >>Month 2, week 2. The need for naps dwindles off, and I am exercising >>more. But I am dissappointed that despite the exercise that I've been >>doing for the past 2 months (running, biking, swimming; I am training >>for a triathalon) I have gained 7 pounds, and this is not muscle. I >>used to row and at most weighed 3 pounds more than I do now, but at a >>muscle weight that allowed me to squat 215 pounds. My quads aren't half >>the size they were then. >> >>Luckily, I haven't had any problems with depression, which I was very >>concerned about. I went through a clinical depression in the fall and >>winter of last year, and probably several times in my life since I was >>twelve. But honestly, I don't see that returning. Strangely though, I >>feel like my personality is changing, and it's hard to explain. I don't >>know if it's the hormonal changes or if it's because I'm in crunch time >>now getting ready to write my Master's thesis and defend by December of >>this year, but I just don't feel very social. And that's OK - I just >>don't feel I NEED to be social. And I feel a little deadpan, what they >>call "flattened affect" when some people on antidepressants lose the >>edge to their positive and negative feelings. I sense this in me. I >>was on Prozac starting in December, but stopped in March because I >>decided I didn't need it. Maybe this is a latent effect of my SSRI use? >>But at least I am content with my life right now. >> >>I remain cautiously optimistic about this therapy and realize it may be >>a few more months -with mome more side effects even- before I start to >>get better. >> >>More updates to come...
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