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Post by willow82 on Feb 4, 2013 18:49:28 GMT -5
The drug in the violet petal study is not supposed to have the clinical flare that Lupron does. However, as estrogen levels drop there could be some cramping and spotting. Lupron (which I am on) is a GnRH agonist versus Elagolix which is a GnRH antagonist. Lupron causes the pituitary to exhaust itself causing estrogen levels to rise, and then fall to near zero. Elagolix interrupts GnRH from creating estrogen so estrogen levels very quickly drop without ever going up. Below is a great article on Elagolx, how it works and the difference from Lupron: propthink.com/sizing-up-elagolix-a-blockbuster-drug/3225I so wish this drug was out now, Lupron is working for me but the clinical flares are HELLISH. I'm on my second month and just entering my miniflare, and hopefully no more pain by my third shot. Elagolix sounds so much better, but I couldn't wait to start a study, or risk not getting the actual drug.
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Post by cortney on Feb 5, 2013 14:57:56 GMT -5
Thank you Willow for sharing that article. I've read every article written about the Violet Petal study and all the studies before it and somehow missed that one, which has the clearest comparison of the two drugs.
By the way, isn't it gross that all the articles are written by market reports? I've learned so much about not only the drug, but how it gets push through and marketed. It really is a demeaning process for people suffering with these diseases and waiting for decent treatments. They discuss reduction of symptoms as increased dollar signs.
Anyway.....The bleeding is still going on and is getting a little heavier. But I can report that my cramps aren't so bad today, so there's some progress.
I'm trying to find out from the study nurse if there is gluten as filler in these pills because I'm also having some fatigue and sore joints which I get from ingesting gluten. I asked her a few days ago and she hasn't heard back from the study people yet. So that's kind of annoying.
From what I've read it seems like the Violet Petal study is the last of the studies needed to begin pushing the drug through for FDA approval. Lets hope so, because it really does seem like a huge improvement to Lupron.
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Post by cortney on Feb 5, 2013 18:28:57 GMT -5
The study nurse emailed back about the bleeding and said that it's probably because my estrogen levels were raising post period, and the drug drastically lowered them. She said that after my next period things should reset.
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Post by cortney on Feb 14, 2013 0:09:09 GMT -5
Hey everybody! I'm on day 15 of taking the pills on the Violet Petal study. The bleeding stopped in about 5 days and hasn't started back up again. So that's good news! Pain has been lowered quite a bit, and I've even had about a week of almost no pain. Because of that I've started working out again which I haven't been able to do for months because of the cramps. So happy about that. I don't weigh myself, but I'll let you know if I've lost weight after my next doctor visit at the end of the month.
New symptoms include mild headache, a little bit of brain fog, and something fun that I like to call "super cramp".
Super Cramp is a brief (about 30 seconds) insanely painful cramp. It feels a lot like a labor contraction and I'd rate it at about a 9 or 10 on the pain scale. Today I blacked out for a brief moment during super cramp and woke up in a hot flash. Pretty horrible.
BUT I wouldn't trade it for the constant moderate pain that I was living with before.
Today is my first day of constant pain since I started the study. This pain started when I attempted to go for a run and slid on some black ice and tore something in my belly. I'm terribly bloated and had to take a vicodin. Which is why this post may be a bit rambling.
.......ok, I'm gonna leave you there. As always, I'll write more if anything changes!
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Post by cortney on Feb 14, 2013 0:10:29 GMT -5
I should mention that Super Cramp has only happened three times. So it's not a common occurrence.
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Post by cortney on Feb 17, 2013 15:44:21 GMT -5
Day 21 on the Violet Petal study.
Haven't had another Super Cramp since I last wrote, so that's cool. And pain is at a minimum. I've had a few moderate cramps at the end of every day but nothing to complain about really.
Experienced a couple more mild headaches and hot flashes. Fatigue is bugging me a little.
I'm writing today because some depression has set in. Depression was my worst fear with taking this pill, and the number one reason that I refuse to try lupron. I experienced severe depression for several years when I was in highschool and on birth control pills. I can look back on all the crummy events of my life....being in an abusive relationship, being in pain with endo, going through divorce.....and the parts that stand out as the worst are the times when I was depressed. I can handle anything life throws at me, but when it comes to this I crumble.
I should be out running around and enjoying my lack of pain, but instead I'm lying on the couch crying my eyes out. I'm trying to do the things that make me happy but I just have no motivation. I got all my paints out earlier and managed to get three brushstrokes out before bursting in tears.
I don't understand why the only reported side effects were headaches and hot flashes. It's a medical fact that lowered estrogen causes depression, so why wasn't any reported in the other Elagolix tests? Or is this one of those times where the doctors are refusing to accept that the two are connected? Like when I told my doc I didn't want lupron because I'm afraid of depression and he told me there are no known cases of that.
I told myself that I'd do my best to stay on this pill. But I don't know how much more of this I can take. Do you think my body will figure out how to live with out the estrogen and I'll start feeling more like myself soon?
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Post by willow82 on Feb 17, 2013 16:05:30 GMT -5
If you are not on an anti-depressant consider starting one, or having your dose increase. Elagolix is likely to cause the same menopause like symptoms as Lupron. I am on Lexapro and it definitely helps temper the hot flashes, and helps my mood some. Actually it has kept me from having any mood swings at all, I still have low moods though that is mostly due to the fatigue. Though I am going to ask to go up on my Lexapro dose on Friday if the low moods and fatigue have not improved.
SSRIs, and SSNRIs are great additions to GnRH drugs, hopefully the study will allow you to take one.
I know with the Lupron the fatigue is it's own beast. Mine was worse when my estrogen levels are dropping. Lots of brain fog, felt very slow and heavy, as well as tired all the time. I believe my fatigue right now is more from healing (now that the endo is shutting up!) and fighting a cold.
It's quite possible Elagolix will be similar, though I know some on Lupron have ongoing fatigue, right now I am praying I'm not one of them.
It definitely seems like you're getting the actual drug.
With the side effect listing it's likely drug company trickery. Lupron though definitely lists mood swings and depression as side effects. They really can get away with murder with the side effect listings of these drugs since the side effects are dependent on how your body responds to lowered estrogen, and it's almost like a secondary effect. You're not reacting to the drug itself most of the time, but rather the cascade effect of the drug's purpose and primary action.
If possible quiz your family members about how menopause went for them.
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Post by cortney on Feb 17, 2013 16:19:36 GMT -5
Thanks, willow.
I'll ask the study nurse if antidepressants are allowed on the study. I'm betting they're not, but it's worth a try.
And I bet you're right about the drug company trickery saying it's not a side effect of the drug because it's actually a symptom of lowered estrogen. I hate drug companies. But I expect that from them, I don't expect it from my doctor. He should be looking out for my best interests.
I'm so glad that I started bleeding for five days right when I started the pill. That proves it's the real deal so I know these other side effects aren't just in my head. I've been told that things are in my head long enough I'm starting to believe it!
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Post by cortney on Feb 18, 2013 21:33:59 GMT -5
The study nurse has told me that antidepressants ARE allowed on the study! I'm going to wait until my next period is over before talking to my family doctor about it though. I feel I might just be having monster PMS because of my lowered estrogen because of the drug.
One more thing to report......I had PAIN FREE SEX today! So depression and other weird side effects are being dealt with through screwing! Sex is good....I like sex again.
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Post by chibineko717 on Feb 19, 2013 23:49:07 GMT -5
My pelvic pain is back and I asked my doctors about it. I brought up the study and both Dr. Mosbrucker and Dr. Pai said I should go on it to see if it helps. I can't keep having surgery since that is causing damage too. So I'm going to try to get on the trial.
I was on Lupron before, but it did not help much since my old surgeon left so much endo. I did not have really bad side effects, so I think I should be okay if I go on the study. I'm currently on continous BC right now, but it still feels like it has not helped much since I am getting ovulation pain each month.
Courtney, did you call in or do the online form when you decided to go on the trial? I don't really want to have to wait around for them to call me back, so I thought calling them might be a bit faster. I also want to thank you for keeping us updated on the trial. I'm glad you can take antidepressants and are having pain free sex!
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Post by cortney on Feb 21, 2013 19:07:03 GMT -5
Hey chibineko,
When I first got started I believe I filled out the form online and waited for them to call. I don't remember it taking very long at all as they seem quite eager to get people started. The person who called me was the nurse who I report to every month, so I think they will give your number to the appropriate clinic to get you in as fast as they can. You'll have to go off your BCP for I think two full cycles before you get the drug, but you start some of the tests in those months which you get paid for.
Good luck!
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Post by crazycatlady on Feb 22, 2013 9:13:05 GMT -5
Cortney,
I agree with Willow. I'd add an anti-depressant. I recommend cymbalta. I take it for osteoarthritis but it is primarily an anti-depressant. I'm almost finished with my first month on Lupron and I have yet to have a hot flash. I think it's due to the Cymbalta.
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Post by cortney on Feb 23, 2013 15:18:57 GMT -5
Thanks for the advice everybody! I've got a hold on the depression and now just have moments of sadness but they pass. For instance, I just cried my eyes out at a Futurama episode.
If it gets bad again like it was before I'll call my doctor and ask for cymbalta.
The latest update is that my period never showed up. The nurse said that they might be lighter, but I didn't even have any spotting. I did have some period like cramps and moodiness and the typical cravings, but no blood. I actually kind of miss it.
Before when I had my period I first would have three days of intense pain, then the bleeding would start and the pain would turn to a warm, throbbing pain that was weirdly comforting after all the sharp cramps. I still couldn't get out of bed, but I wasn't thrashing around and moaning like the days before. It was almost like a visit from a kind and quiet friend when you're sick and she eases your pain a little and helps you calm down.
I miss it.
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Post by cortney on Feb 25, 2013 20:01:09 GMT -5
Had my now monthly appointment today. No pelvic! I had to take a pee test, give several vials of blood (some before, and some an hour after I took my first Elagolix dose of the day) and had to fill out a bunch of questionnaires. I never got my period this month, and the nurse suspects that I may have gotten the higher study dose.
The questionnaires were the same that I did the month before that got me all depressed. Questions like "how often do you feel alone?" and "How often do people not believe your symptoms?" I answered by circling either "never, rarely, sometimes, often, or always" After 25 or so questions you get pretty depressed with all the "often's" and "always'". But retaking the same questions after a month on the drug I realize how much better I'm feeling! More rarely's were circled than "often's"!
I really feel like I was given another chance. And this chance could diminish my endo and keep it away for years! So things are looking up and I'm feeling really great about doing this study now!
My next appointment will be at the end of March and will be just like this one.
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Post by chibineko717 on Feb 25, 2013 20:36:03 GMT -5
I got on the trial! I have my first appointment next week!
Cortney, I'm glad you're feeling better! Thanks to all of your updates, I know what to expect when I start the trial.
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