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Lupron
Jun 1, 2006 20:52:27 GMT -5
Post by mishka on Jun 1, 2006 20:52:27 GMT -5
Hello everyone, and hi ouchy
I was prescribed Lupron today from my Gyn, and I was wondering what peoples personal stories were with this drug. My reading seems to suggest that I stay as far away from it as I can, but I have no experience with this sort of thing.
Any thoughts and opinions would be welcome.
M
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Lupron
Jun 2, 2006 10:56:32 GMT -5
Post by andie4405 on Jun 2, 2006 10:56:32 GMT -5
I was on Lupron and it was awful....Aside from the continued pain and spotting....There were problems with hot flashes and my mood swings were HORRIBLE!!!! It is a good thing that my fiance loves me as much as he does because Iwould cry then laugh then yell all within a minute....A little exaggerated but you get the point....Also came the breast tenderness and I did notice that I was losing a lot more hair than normal....Not bald but thinned out quite a bit....Anyway that is my story with it and I personally would not recommend going on it.....The other bad thing is that it stays in your system for I think three months so even if you did it once you would have long term effects.....Just my thoughts though.....Keep me informed and good luck.........Andie
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Jenn
Junior Member
Posts: 71
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Lupron
Jun 3, 2006 14:43:26 GMT -5
Post by Jenn on Jun 3, 2006 14:43:26 GMT -5
I was on it for 6 months and i had some side effects but, was in no way as bad as the pain I had before I took it. I had no pain for the whole 6 months but, I did have night sweats, mood swings and headaches. I would do it again just for the pain relief. The side effects were worse at times bt, it was still worth it. I read up on Lupron alot and everything for the most part I read was bad but, I have a wonderful doctor who I trust so I decided to go for it. He thought I would have relief after my last injection for atleast 3-6 months but, I didn't. My pain was back after one month from my last shot. I recommend it b/c I was more normal in those six months than what I had been in a long time b/c I was finally pain free. Well good luck and I hope it all works out for you.
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Lupron
Jun 6, 2006 12:06:46 GMT -5
Post by Janet on Jun 6, 2006 12:06:46 GMT -5
I've never used it. But I think you should remember that you usually only hear about people who had bad experiences, people that loved or it worked well for don't really talk about it. I don't mean here, I mean in general when you are researching. My dr told me he's had great luck with it with his patients and only had 1 with problems out of alot of patients. I still chose not to do it, but I just wanted to remind you horror stories are always more prevalent in the general areana than happy stories.
Janet
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Post by erzulie on Jun 6, 2006 14:17:51 GMT -5
Just the same, even if you believe the risks are small, you have to ask yourself if it could ever be worth taking a drug that can cause bone loss. Add-back therapy and calcium supplements are supposed to reduce the risk of this, but it can happen even if you do everything right. When I learned that I decided the drug couldn't possibly be worth it. Besides I've been a member of several different endometriosis discussion groups and I've heard a TON of testimonies about Lupron and only one or two of those people have said that they really think it is worthwhile. Most people say the side effects outweigh any potential benefits, and even at its best it's only a temporary fix. It is by no means a cure and you can't even stay on it that long. Besides that, each injection stays in your system for months so if you find it makes you miserable there's nothing you can do about it, you just have to live with it. It's not like with other medications where you can discontinue it right away if the side effects are unbearable. Plus, I've heard that doctors get kickbacks from the drug company that makes this, so you can't necessarily count on them to be honest about the effects. You can't always count on patients to even tell their doctors when they have problems, either. When I tried birth control pills I had major problems with them but I never told my doctor because I was afraid she would try to get me to either stay on them longer or try a different kind, neither of which did I want to do. People who have really bad experiences with Lupron may, in some cases, decide not to go back to the doctor that prescribed it, so the doctor may assume the patient felt better after that. I would rather listen to teh testimonies of people who have tried it instead of doctors.
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Lupron
Jun 6, 2006 15:36:49 GMT -5
Post by ouchy on Jun 6, 2006 15:36:49 GMT -5
Well-said, erzulie!
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Lupron
Jun 6, 2006 22:02:16 GMT -5
Post by mishka on Jun 6, 2006 22:02:16 GMT -5
Thank you all so much for your input. I don't think that Lupron is for me. I agree with erzulie, the benefits do not outweigh the risks of taking this drug. I have to admit that I am a little frustrated with my Doctor. When she did the Lap she didn't find endo. Because of the rectal bleeding and severe pain during menses (all other diseases have been ruled out) she feels that I have endo even though she did not find any. I tend to agree with her. Anyways, I find it a little frustrating that I don't even have a confirmed diagnosis but take this drug anyways and we will see if it helps. I must say that I care about my body too much to just blindly take a chemo drug "just to see if it helps". I have opted instead to see a endo specialist in Vancouver for a second opinion.
Thanks again M
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Lupron
Jun 7, 2006 12:49:34 GMT -5
Post by erzulie on Jun 7, 2006 12:49:34 GMT -5
That sounds like a good idea, mishka. A specialist might have better ideas for treatment, and might even be able to find the endometriosis (if you're willing to go through surgery again). Sometimes it's ahrd to find because it's microscopic, but sometimes it's just in really weird places. It does sometimes appear inside your organs instead of on them.
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Lupron
Jun 19, 2006 13:21:50 GMT -5
Post by positivity on Jun 19, 2006 13:21:50 GMT -5
I hope you are feeling better. I know how it sucks not to know what is wrong with you. But I wanted to let you know of my experience with Lupron. I love it!!! This is the 3rd session I have been on and I never want to get off of it. The only symptoms I have had was a few mood swings and hot sweats but thats it. It really helps my stomach problems-diarhhea, nausea and my pelvic pain. I'm so afraid to start a new job b/c the insurance I have right now covers it. I consider it a blessing!!
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Lupron
Jul 5, 2006 10:02:55 GMT -5
Post by erzulie on Jul 5, 2006 10:02:55 GMT -5
I just read this piece of an article that someone posted on the WITSENDO mailing list, and I thought those of you who are on Lupron or who are considering it might be interesting in knowing this:
"Prolonged administration of gonadotropin-releasing hormone (GnRH) analogues induce a decrease in serum estrogen level, which may aggravate subclinical or mild autoimmune thyroid disease. [...] These results indicate that GnRH analogues possibly induce clinical onset of Graves' thyrotoxicosis or destruction-induced thyrotoxicosis. Clinicians should be aware of this phenomenon. All patients who are to receive GnRH analogue therapy should be examined for antithyroid antibodies and family history of autoimmune thyroid disease, and should be followed accordingly." Quote taken from: Thyroid. 2003 Aug;13(8):815-8. "Possible induction of Graves' disease and painless thyroiditis by gonadotropin-releasing hormone analogues." Amino N, Hidaka Y, Takano T, Tatsumi KI, Izumi Y, Nakata Y.
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Lupron
Jul 6, 2006 12:23:12 GMT -5
Post by francesca on Jul 6, 2006 12:23:12 GMT -5
Hi Mishka I can tell you from experience, I have been on lupron for almost 18 months and I can say truthfully that my pain has disappeared, however, I can also re-assure you that all of the testimonials in regards to 'other' side effects are real. Weight gain is one of the worse symptoms I have endured. In 18 months I have gained approximately 50lbs and have constant carb cravings.
I am thinking of re-evaluating my options- one is to have a full hysterectomy. Does anyone have any recommendations or suggestions.. Thanks
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Lupron
Sept 26, 2006 14:54:42 GMT -5
Post by Holly on Sept 26, 2006 14:54:42 GMT -5
I am nearing the end of my first 3-month injection. I do not plan on getting another. I made the pain worse, actually much worse the first couple weeks. In the end, it did nothing to help my pain and gave me added side effects of hot flashes, fatigue and moodiness that are still hanging around, even though the shot is supposed to have worn off by now. From what I've read, heard and experienced, it helps some and makes others worse. You just have to decide if it worth the risk and hope your are one of the ones it helps. I count myself lucky that my side effects weren't worse, but I still have the same pain I started with plus all these menopausal symptoms that just won't seem to go away. Sorry I couldn't be more positive, but wanted to give my opinion and experience. here is a link to more personal stories... www.askapatient.com/viewrating.asp?drug=19010&name=LUPRON
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Lupron
Sept 26, 2006 15:26:45 GMT -5
Post by mwilmot on Sept 26, 2006 15:26:45 GMT -5
My symptoms have not been so bad. Some mood swings (but I'm better now) and a few hot flashes - about 5-10 a week and some vaginal dryness. I took a one time dose (a 3 month dose) but would not recommend it to anyone because of how radically it can affect people.
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Lupron
Oct 15, 2006 4:33:29 GMT -5
Post by mariewynn on Oct 15, 2006 4:33:29 GMT -5
My doc is talking about putting me on Lupron if my colonoscopy is clear. I told him I've heard bad things about it and he said the side effects are horrible but it's pretty much our smoking gun right now if it is the endo (have already been on bcp, progestins, anti-inflammatory meds, and had a lap done). Are there any alternatives before the lupron? I already have night sweats and hot flashes from the progestins, not looking forward to adding mood swings, weight gain, and bone loss to that.
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Lupron
Oct 15, 2006 10:09:08 GMT -5
Post by erzulie on Oct 15, 2006 10:09:08 GMT -5
There are tons of them. Try looking under "alternative treatments" on the board.
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