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Post by jessabug on Aug 1, 2012 11:58:04 GMT -5
Hi ladies,
Has anyone heard of this? There is currently a nationwide study going on for a new drug for endometriosis called Elagolix. I have been recruited to participate, and am being pre-screened via phone interview today. Though I'll ultimately make my decision based on what's best for me, I wanted to get all of your thoughts on medical studies. I have received a consent form that discusses the study and the drug in great detail. Obviously, it is not yet FDA approved, which is why they are conducting the study, but they have already conducted numerous studies and the side effects of the drug is just like all of the others on the planet.
Part of the reason that I'm humoring the idea of participating in this study is because I still do experience moderate to severe pain more than I should, and I'd like for that to stop. That being said, I'm not sure it's so bad that I want to do hormonal treatment (you girls know how I feel about that kind of stuff), but another part of why I'm drawn to it is that if I qualify to participate, I almost feel a sense of obligation to all of the women and girls out there who suffer from endometriosis. I feel like I would be doing myself and others with the disease a disservice if I turned the other cheek when I have the opportunity to assist in any sort of medical advancement.
The woman who has been in contact with me, when I asked her to compare Elagolix to another drug that I'd be familiar with, said that it was different from the drugs currently on the market, but if she had to choose one she'd say that it's most like Lupron. Elagolix, however, is a pill that is taken orally on a daily basis.
I guess the way I see it is that I'm in pain pretty regularly, and out of options (i.e. I still have yet to find anything that I personally find a reliable source of pain relief), and I'd like to help out the endo community. Best case scenario, this drug helps me and others to be in better health. Worst case scenario, it makes me miserable, in which case I can stop treatment at any time.
I tried to attach the consent form to this post so that anyone interested can look through it, but it's too large. If you want me to email it to you, PM me and I will do that. I'm curious to know your thoughts on the matter!
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Post by MustangGtGirl on Aug 1, 2012 12:51:36 GMT -5
I can understand wanting to help but taking something that has not been approved by the FDA makes me nervouse. I never tried Lupron but from what I had heard the girls on here say and a friend of mine that tried it I would think real hard before saying yes. My friend went through such bad hot flashes on lupron that last winter she was actually sitting in snow with at shirt and shorts to cool down.
BE CAREFUL !!!
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Post by JC on Aug 1, 2012 13:30:39 GMT -5
Oh Lupron......
I will say though, at least it's a daily pill rather than a shot that you're stuck with. If you hate it then you can just stop taking it. I will read more about this new drug to see exactly what it does. I'm personally not a fan of hormonal treatment either but I do know it works for some women. As we all know... you never know how something will work until you try it. We're all different!
Definitely keep updating this thread about your progress! It sounds really interesting.
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Post by JC on Aug 1, 2012 13:36:52 GMT -5
"Elagolix is an oral gonadotropin-releasing hormone (GnRH) antagonist."
I wonder how it's different from all the other GnRH antagonists out there. Maybe because it's in a pill form?
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Post by 1234 on Aug 1, 2012 13:40:16 GMT -5
Jess, just wanted to give you a warning that I'm giving you my full opinion in this response. Feel free to disregard it completely!
I completely understand the feeling of dedication to other women suffering from endometriosis, and I think that it is really laudable. From your first diagnosis, you very quickly moved from wondering "what the hell is going on with me" to saying "why is this happening to so many women and what can we do about it." I really respect that. I'm just worried about this drug.
This drug, as all GNRH agonists, operates by stopping your body's production of the hormones that stimulate your ovaries' production of estrogen, thereby stopping your ovaries' production of estrogen, which puts you into menopause. BIrth control pills, by contrast, mimic pregnancy, not menopause. As you know, this sudden plunge into menopause (rather than the natural, gradual decrease in hormone production that comes with age) can have very unpleasant short-term side effects, physically and mentally. It also has potential long-term side effects, which are even more concerning: 1) studies show that the ovaries of some women who have been on GNRH agonists never return to the same level of production of estrogen as before being on the drug, which has implications for long-term health and fertility and 2) permanent loss of bone density. You are very young to take either risk!
As a separate argument, no GNRH agonist "cures" endometriosis. They don't reduce or eradicate the lesions. They do suppress the hormonal activity of the lesions, which can give temporary relief, depending on several things, among them whether the relief is greater than the side effects experienced or whether the woman has deeply invasive endometriosis or more surface endometriosis. Because of the long-term side effects (permanent bone loss and/or loss of ovarian function/hormone production), no woman can be on a GNRH agonist for very long, and so even if some relief is experienced, it will always be temporary.
And now to my almost final argument, specifically for you. You have had excision surgery, from one of the best. I know that you are still experiencing very hard cramping and pain, particularly around your period and I am really, really sorry about it. Whether it is adeno, or what is going on, I know you don't know, but particularly while you don't know, I am worried about your trying this drug. Assuming that there are no bits of endometriosis left in your pelvis, taking a drug that has so many long-term side effects just worries me for you. It is possible that a GNRH agonist or BCP might help adeno also, since teh etiology of both diseases is so similar, but that would have to be a separate study!
And now to my final argument! I do really appreciate your desire to help other women struggling with this disease. I also resonate with it. HOwever, I feel very strongly that I do not want to participate in medical trials that I feel are continuing to find slightly different twists on the same old ways to address endometriosis--ways that have been ineffective at addressing the root cause of the problem. I know that hormonal treatments will always have a place in endometriosis care, and I know that they help many, many women, and I am really grateful for that. But I want to support medical trials that try to solve the problems, not just address some of teh symptoms while causing more.
So that's it for my being opinionated. I would speak so strongly if I didn't know and trust your decision-making process and your mental strength and independence. I am happy for you to completely ignore everything I say, and will support you whatever decision you make!
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Post by JC on Aug 1, 2012 13:49:49 GMT -5
Aww RustMyrtle is so sweet. She really does care for your safety Jess! Would you be willing to at least ask your doctor's approval before you do this? Also, this new drug is a GnRH an tagonist, not an agonist. There is a big difference. Your explanation Rust, is still completely correct for the antagonist, it's just slight error on word usage. I'd love to bore you all about what the difference is but maybe some other time.
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Post by Karen on Aug 1, 2012 21:04:11 GMT -5
I've been following reports of this drug for a bit now and I have the exact same opinion as Rust! The thing that bothers me the most is that in every article I see, they talk about financial projections, and when I see that in the same paragraph as a study, can't help me wonder if they really have our best interests in mind. I know there's no cure for endo, but hormonal methods just mask the problem and don't address the underlying causes, which creates a reliance on these medications and can create further side effects and issues down the line, some of which are permanent. I wouldn't touch this with a 10-foot pole.
If it's something you're really considering, though, please please please have a very frank discussion with your doctor or some other medical professional that ISN'T tied to this drug or study. You'll want an unbiased medical opinion before signing up. I really appreciate your willingness to do this for all the endo girls out there, but if you're going to do it, do it because it's best for YOU!
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Post by 1234 on Aug 2, 2012 8:39:18 GMT -5
oh man, that is what I get for being all opinionated in a public forum. Jenaya, what is the difference between agonist and antagonist?
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Post by JC on Aug 2, 2012 11:03:20 GMT -5
An agonist is a substance that mimics the behavior of another substance. Sometimes it can even work better. An antagonist is a substance that completely stops the behavior of another substance.
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Post by JC on Aug 2, 2012 11:04:28 GMT -5
If it's something you're really considering, though, please please please have a very frank discussion with your doctor or some other medical professional that ISN'T tied to this drug or study. You'll want an unbiased medical opinion before signing up. I really appreciate your willingness to do this for all the endo girls out there, but if you're going to do it, do it because it's best for YOU! I totally agree with this. I think it's a good idea to talk to an unbiased doctor, even better if you can talk to Dr. Redwine about this. I seriously admire your big heart in trying to help other women fight this disease. We just worry about our Jess!
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Post by MustangGtGirl on Aug 2, 2012 11:34:39 GMT -5
I agree with Karen make sure you speak with your Dr before doing anything.
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Post by jessabug on Aug 2, 2012 12:26:56 GMT -5
Thank you for all of your feed back, girls!
Kristin, you pose quite a convincing argument! I spoke with the nurse on the phone yesterday about everything in greater detail. For what it's worth, I forgot to mention that she's working with Dr. Beyerlein, the best endo-focused gyno we have here in Eugene, and he also apparently did a lot of the research for Lupron.
What she told me yesterday is that the reason doctors want to use Elagolix is because it is supposed to be as effective as Lupron, but with less harsh side effects because instead of shutting the ovaries down completely, it just slows things down a lot. I am not sure but I think this is a little different from what you were explaining Kristin? About how a GnRH shuts down hormones and then shuts down your ovaries? What do you think?
I really appreciate all of your helpful feedback, girls! I still am not sure what I'll do, but it really helps to read what you think about it.
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Post by jessabug on Aug 2, 2012 12:27:16 GMT -5
Oh! And I definitely think it's a good idea to talk to a doctor. I'm goign to try to get in touch with Dr. Redwine
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Post by MustangGtGirl on Aug 2, 2012 14:32:26 GMT -5
Keep us informed when you talk to Dr. Redwine I am glad you are going to speak with him.
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Post by JC on Aug 2, 2012 19:25:16 GMT -5
Well it sounds like you are looking into this in detail which is what I expected you to do smarty pants. We just worry about you that's all. I think you are doing what you can to be well informed though. I think I'll feel better about it after you talk to your doctor about it. We just worry!!!
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