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Lupron
Dec 19, 2012 19:27:01 GMT -5
Post by MustangGtGirl on Dec 19, 2012 19:27:01 GMT -5
Thank you Karen. I just want others to know it does work for some. make sure you do research and ask you Dr as many questions as you possibly can. Before I agreed to start Lupron when I made my Dr appt I asked to be scheduled for Extra time walked in with a note book full of questions and handed it to her. She went through every question and wrote down the answers in the note book for me. Don't be affraid to ask questions.
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Lupron
Jan 9, 2013 21:18:34 GMT -5
Post by willow82 on Jan 9, 2013 21:18:34 GMT -5
I wrote this article on my journey with starting Lupron along with general history and information on the drug: expiation.org/blog/?p=412I took my first injection a week ago. I had a long appointment with my PCP and phonecall with him, along with a long appointment with my gynecologist and unfortunately at this point I had few other treatment options. My endometriosis was very deep during laproscopy, and extensive so we assume it is somewhere on my colon, microscopic all around, and in my nerves in the rectovaginal space. For whatever recent combined hormone BC methods sends my Endo out of control. Higher estrogen stops the bleeding, but it keeps growing and causing pain. My month on 30mcg of Estrogen felt like I was hours before my period starting every moment of every day. I'll hopefully get Mirena inserted soon as I do very poorly on norethindrone. We're hoping I tolerate Lupron well, that it eases the pain and with tolerable menopause since I will likely need a hysterectomy at some point. We're viewing Lupron as a test of what a menopause type state does for my Endometriosis, and also hopefully give my body a break. My nausea and digestive issues are so bad that further diet modification (and I already am close to an endo diet) wasn't possible. I usually rely on dark leafy greens, and haven't been able to digest them properly in several months. I can barely get anything in or out of my system at this point. I went back on regular vitamins to hopefully increase my nutrition somewhat. My body is just shot right now. My last dose of birth control was about a week ago, I've had moderate to heavy bleeding since Saturday, with a break on Monday. I'm assuming when my bleeding came back on Tuesday full force that's when I started the clinical flare. In another week the menopause symptoms should start. I get a lot of concern about Lupron, though for some of us it IS the best option. It is a terrible and lonely place to be with this disease.
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Lupron
Jan 12, 2013 13:21:45 GMT -5
Post by mcoates65 on Jan 12, 2013 13:21:45 GMT -5
I loved being on lupron yes I did get some hot flashes but they were minor inconveniences no pain no period enjoyed life for first time an a long time, sex drive good. My Dr just took me off and put me in visanne not supposed to be as many side effects franking I felt so bad on visanne now I am going back on to lupron and I am very happy about it...!
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Lupron
Jan 14, 2013 16:11:33 GMT -5
Post by MustangGtGirl on Jan 14, 2013 16:11:33 GMT -5
I got my 4th shot Dec 21st. 1 wk later all my pain was back. I scheduled an emergency appt. They did sono and checked the Mirena. The strings were missing but Mirena was placed right. The Dr feels I have a cluster of Adhesion's and we discussed a hysterectomy. I have decided to do the Hysterectomy instead of finishing the Lupron. It was great for the first 3 months but I guess it wasn't my answer. The pain is so bad right now. I had forgotten for a few months anyway how bad this pain can get. I'm comfortable with my decision. I can't have children anyway and I am tired of trying to find solutions so I feel like I should just get rid of the problem.
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Lupron
Jan 14, 2013 18:46:07 GMT -5
Post by Karen on Jan 14, 2013 18:46:07 GMT -5
Kimmie, I'm sorry to hear that. You know we'll support you 100% if you decide to have a hyster, but I have to ask - is your uterus your problem? If you have endo elsewhere, a hyster may not help. I know you're in pain and you want a fix, but I want to make sure you've asked the right questions as it's a reversible decision! Head over to hystersisters.com if you want some tips, questions, things to prep for, etc. that we can't help with here!
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Lupron
Jan 14, 2013 19:43:34 GMT -5
Post by MustangGtGirl on Jan 14, 2013 19:43:34 GMT -5
My uterus is reconnected to my colon. This is the third time I would have to have it separated and like I said the Lupron and Mirena did not help. I have lost almost all my hair this month and the pain is sooooo BAD. I think by getting rid of the uterus etc because I am prone to cysts I can nip this is the bud.
I am afraid of the surgery itself because I am still dealing with issues from the last one but the two surgeons are going to remove the scar tissue by the open wound from the last surgery and close the wound as well.
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Lupron
Jan 14, 2013 21:09:14 GMT -5
Post by loveshoes on Jan 14, 2013 21:09:14 GMT -5
Kimmie - I'm so sorry to hear this! Yes, I second going to hystersisters site, they can help you there as well. A co worker of mine had a everything taken out for a different medical issue, only left her ovaries, it was a very long recovery. Hang in there!
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Lupron
Feb 7, 2013 9:38:14 GMT -5
Post by crazycatlady on Feb 7, 2013 9:38:14 GMT -5
I had my first Lupron shot January 29th. So far no side effects. Nor have I had a hormone surge/flare. For those of you that have had Lupron, what was the timing of your hormone flare?
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Lupron
Feb 9, 2013 13:13:30 GMT -5
Post by willow82 on Feb 9, 2013 13:13:30 GMT -5
For the record I am going to state that we need more Lupron threads, and most of this monster thread is just talk, not links to the actual scandal that happened with Lupron, or actual experiences of people who have been on the drug. This thread is shameful. This drug actually can help people, it's been my saving grace, I almost didn't start it because of this thread. I'm glad my doctor called me and poured his heart out telling me that he thought this was the only thing that had a chance of giving me my life back. I'm glad I listened to him.
Now to respond to crazycatlady:
By the end of week one I was having bleeding and other symptoms of the clinical flare, it started to die down mid week three, and week 4 was nearly pain free. That week was a frikken miracle considering that I had been in non stop pain, bloating, digestive hell for over 3 months. It is likely my flare week really was only from about day 4 to day 14, and from day 14 to 21 I was just healing.
From day 4 to day 10 both shot months I have had severe fatigue. I need to make sure I sleep a lot and prepare to only have 8-10 functional hours in the day. If I don't watch it I collapse, like I did this past Thursday. However, last month the fatigue just went away one day, and I am expecting the same this month.
The first month day 3 through 10 I had bleeding, half of that was likely withdraw bleeding from BC, and the rest was the beginning of the clinical flare. I had about a 25% worsening of my symptoms for about two weeks, starting on day 3.
I am currently on day 9 of my second shot, my fatigue set in on day 4 and my pain started to go up again about the same time. This time my pain symptoms are very mild, and my digestion hasn't been upset. In fact it looks like for the first time in over 3 months I can go off my stomach meds. I need about half the pain medication I needed before. According to my doc this flare should start to remit around day 14, and it should not happen again.
My only menopause symptoms (and I am currently on NO hormones, just Lexapro) have been night sweats, occasional mild hot flashes, no more than 1 a day. I've had no mood swings, my hair and nails are a bit more brittle (though that could also be the dry weather), no hair loss, and the only irritating symptom I've had is the fatigue, which is likely more a side effect of the clinical flare.
So far in my second clinical flare I've also had no bleeding.
Already this has been more than worth it, it is so nice to be able to eat food again! I've had some mild nausea this week, but my anti nausea meds actually help! Also, my pain free week is an excellent indication that this is going to work, and also that my symptoms are rapidly dropping in intensity.
I am sooooo thankful I started this drug, I wish I had done so right after surgery, and I am afraid of the damage I may have caused by waiting.
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Lupron
Feb 9, 2013 20:05:51 GMT -5
Post by crazycatlady on Feb 9, 2013 20:05:51 GMT -5
Thanks Willow!!!
I have to agree. It would be nice to have separate Lupron threads. One giant thread doesn't help. It would be particularly helpful to have a "bad experience" thread and a "good experience" thread. Then maybe a questions thread? I would be nice to be able to post "Hey, is this a side effect.."
My experience with Lupron has been great so far. My worst side effect, if it is related to the Lupron is bloating. I haven't experienced any hot flashes or anything else.
For what it is worth, I found an awesome comforter and blanket that eliminated any night sweats. NASA developed a fiber called outlast. You can get a light comforter or a blanket made out of outlast. I have the cotton/outlast blanket and the light comforter. It's perfect! I never sweat at night now.
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Lupron
Feb 9, 2013 22:35:35 GMT -5
Post by willow82 on Feb 9, 2013 22:35:35 GMT -5
Oh man, if I had more money right now I'd totally buy that NASA blanket! Right now we have one of those synthetic fleece blankets and a nice duvet, I'm thinking of buying a woven all cotton blanket like my favorite couch blanket, I definitely have less sweats when I am downstairs . . .
On Lupron threads there are a few that'd be great, especially one just for managing GnRH agonist side effects. There is so much out there now to make this drug easier to handle. From drugs, to blankets, to changing up sleep hygiene, etc.
It'd also be nice to have a roll call thread for those of us on Lupron, or have been on Lupron. A few of us have found each other and support each other off forum. It'd be nice to have a central place for people to summarize their situation, add back and/or adjunctive meds, start date, etc, along with interest in chatting with other people who have been on GnRH agonists.
It was so helpful for me to have women to talk to who were already on the drug, and made my first month so much less scary, and I hope I've been able to pay it forward by sharing my experience with others. Also, if I hadn't had a chance to talk to women who had been on Lupron and ask LOTS of questions there is a decent chance I'd have chickened out :/
Lupron can be very helpful but the first two months are a roller coaster. Though with the right knowledge and symptom management it can have a minimal impact.
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Lupron
Feb 11, 2013 18:34:16 GMT -5
Post by xsnoflakex on Feb 11, 2013 18:34:16 GMT -5
Hi there! After my lap last June (2012) my gyn also prescribed me Lupron (was pushing me on it actually), but my personal choice was to stay away from it & try alternative treatments. Everyone's stories will be different, and yours will be also if you do decide to that route, but make sure it's your choices not your gyn. Wish you the best!
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Lupron
Mar 5, 2013 15:40:35 GMT -5
Post by cortney on Mar 5, 2013 15:40:35 GMT -5
Ok so I have a possibly paranoid question for Lupron people. My question is, once the drug starts working and you have less pain, do you still have pockets of really bad pain days sometimes? I ask because I'm on Elagolix for a month and have been doing very well on it. Like, NO pain for almost a month! Then I get my new box of monthly pills from the doc and less than a week later and I'm in intense pain again. The paranoid part is that I'm wondering if she accidentally gave me the wrong pills and I have the placebo instead of the real drug. Does that make any sense?
I'm asking Lupron people because that's the only drug similar to Elagolix that might experience this.
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Lupron
Mar 5, 2013 17:54:14 GMT -5
Post by willow82 on Mar 5, 2013 17:54:14 GMT -5
So another Lupron update from me!
I got my third shot last Thursday, and have been out of constant nasty endo pain since week 7 of my Lupron treatment. Mid last month my hot flashes, fatigue and depression worsened. I have a horrible track record with Norethindrone. After a week of arguing with the gyn office my PCP went ahead and prescribed my Provera. I've been on it for 2 weeks now and feel SO much better. My night sweats have improved, my energy is back, and my hot flashes are starting to reduce.
Unfortunately after bowel movements I am still having severe pain, nausea, and what feels like spasms in my pelvis. My current gyn is clueless (gettin a new one! appt in April). However the problem is nearly identical to what I was experiencing after I developed intestinal adhesions. So unfortunately those are probably back. When I see my PCP next week I'm going to ask for referrals to pelvic pt, and GI.
It is so cool to be able to eat again! And have an appetite! Not be in pain! Every day is better than the day before.
Lupron has totally given me my quality of life back when nothing else was helping.
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Lupron
Mar 5, 2013 18:03:52 GMT -5
Post by MustangGtGirl on Mar 5, 2013 18:03:52 GMT -5
Willow I am so happen it's working out for you. I was great on it till my 4th shot that's when all the pain came back like I wasn't even on it. I am so happy to hear good news from you. I hope it continues to work and yea if you are not happy with your gyn then get a new one ASAP
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