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Discussion:
Violet Petal Study
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I just found out that I may qualify to participate in the Violet Petal Study. I had my pre-screening today. If you haven't heard of it yet, it's a medical test for a new daily drug for endometriosis pain and it is supposed to basically do what Lupron does without the harsh side effects. Have any of you done this or considered doing it? It's scary to me, but Lupron is equally scary so I'm not sure what I should do! I currently can't afford Lupron because my insurance denied it, so I feel like this could be a good option. The downside is that the treatment period is 20 months, whereas Lupron is only 6. The upside is that I would get paid to receive free treatment and if it works it could change my life.

I'm just looking for some advice from those who have already considered it!
Posted on 04/16/13, 03:48 am
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Reply #1 - 04/16/13  8:23am
" Try doing a search on this boards and others. There have been a bunch of ladies who are participating in the study, or have thought about it. I decided not to participate because I cannot risk getting a placebo. Good luck if you decide to do the study! "
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Reply #2 - 04/16/13  12:16pm
" I declined to participate because I want to get pregnant soon and I was also afraid to take the chance of getting the placebo. My pain is through the roof, and I was specifically told I wouldn't be able to take pain meds. I think if that hadn't been a requirement then I probably would have done it. "
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Reply #3 - 04/16/13  3:15pm
" Just realize that there can be risks taking anything experimental. When I took Femara it was considered experimental (an off label use) for endometriosis. I completely regret doing it. It caused me physical pain, financial issues (hospital bills!), and I'm still dealing with problems even years after I took it.

Now when Femara came out, it just happened to coincide with the patent expiration of Tamoxifen. You can read about that coincidence here:

http://www.healthy.net/scr/article....

Were aromatase inhibitors actually better than tamoxifen, or was it a patent issue? Could've been just coincidence, but I would've liked to have known this information before I took Femara.

Now here's a link discussing Elagolix vs Lupron (both connected to the same company btw). In it is mentioned the fact that Lupron loses it's patent protection in 2015:

http://www.examiner.com/article/is-...

I looked into Elagolix, but It was little too déjà vu for me. Then I saw it's from Abbott and that made up my mind not to even bother (but that's just my feelings on it).

And when I took Femara the doctor that prescribed it recorded me as responding well to it. No problems... Yeah, he just completely forgot to mention the ER visit, the surgery, and all of the other medical problems I got from it.

I don't know how truthful doctors are in these studies. For the Femara my doctor already knew what outcome he wanted, and he probably would've written "responded well" even if I dropped dead. My primary doctor was the one that told me to stop taking it, and to never go back that doctor.

Just do your research, and make the best decision you can. At least with the Elagolix it looks like it's in pill form and not an injection. That seems like a plus at least.

Take care, and good luck! "
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Reply #4 - 04/17/13  11:23am
" I did not qualify for the study because of my surgical history and severity level. I was like " Fine, whatever." I do hope there was enough actual research done on any drug they have you take for that study, kinda risky if you ask me. "
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Reply #5 - 04/18/13  2:37am
" Thanks for the info, ladies. I've been talking with the doctor conducting the study in Seattle and she's also speaking with my endo doctor and primary care doctor to determine if it is a good route for me. Reading the detailed consent form and talking to the doctor, it seems like the side effects of this drug are nothing compared to Lupron. That gives me some hope! My only concern is that I have to go through a "Washout" period before I can start the drug. That's two months without any birth control and I'm worried about how my body will react to that. I've been on BC since I was 14 to control my periods and menstrual pain- I don't really know what life is like without the pill. "
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Reply #6 - 04/18/13  8:19am
" Can anyone join the study? do you have the info, I'd love to check it out.

I've done quite a few studies (for the type of cancer that I had) and honestly I don't regret any of them. I'm not sure if they made you aware but you can stop taking the meds or drop out of the study any time you like.

Starting new meds is petrifying!!!! So much to consider. I'd say with reading your post there seems to be more upsides then down. Remember not only could this help you in the long run but think of all the others that will come after you that could potentially be affected in a good way because of this.

Let us know what you decide. I think its awesome that you are considering a clinical study, its really brave to be a guinea pig I know! Good Luck in what ever you decide. "
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Reply #7 - 04/19/13  7:30pm
" Yeah, you should be able to find out where it is being held in your area by going here: https://www.violetpetalstudy.com/Ho...

They have a pre-screening process that will tell you if you're eligible. I know you have to be between 18-49 and you cannot have started menopause or pre-menopause and you have to have regular periods. "
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Reply #8 - 04/20/13  7:39pm
" :( They don't have a study going on in my area. I miss living near Boston at times like these. They have the best hospitals with state of the art cutting edge medical stuffts... :( "
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Reply #9 - 05/18/13  5:06pm
" I'm currently in this study, and I'm definitely not on placebo. You don't technically know, but if you get the actual drug your period stops and you get hot flashes, so I'm positive I'm on the real meds. The good thing about this study is that if you are in placebo group you can sign up for the extended study after, and in that one your guaranteed to be on the medication.
The treatment period includes washout, where you go off other meds including birth control, and the follow up period. You only take the medicine for 6 months. I'm in my third month of medicine, and so far, pretty good results! The hot flashes suck, and keep me up at night, andmy sex drive has plummeted, but other than that side effects are mild. The first month was hard, lots of bleeding, cramping, and nausea, but it quickly faded. The side effects to me, while frustrating at times, are worth the benefits. No period, huge reduction in pain, bloating, etc.
m hoping that it doesn't all come back when I stop. Supposedly this should help for a few years after I stop taking it.
I really didn't want lupron, and while this is similar, it doesn't lower your hormones quite as much, do side effects are lessened. Also, because its pills instead of a shot, you can stop taking it at any time and get it out of your system ASAP if you have problems on it. That said, you take pills exactly 12 hours apart, and can't eat 2 hours before or one hour after taking them. Not a big deal, but it can be tricky sometimes.
It's also great to not worry about paying for treatment, and in fact they pay me, so missing work for my monthly appointment gets made up for. Honestly, the biggest downside is the endometrial biopsy. They do it before and after completing the study. You're awakefor it, and I was unprepared for the level of pain. It was bad.
Still, I would recommend talking to your doctors about qualifying for this study rather than lupron. For me, it was the right choice.
Also, this is a phase 3 study, meaning they've already tested it for safety in human subjects. I work in clinical trials, this one is low risk. "
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Reply #10 - 05/18/13  7:49pm
" @rachens-Thanks so much for posting the update. Sounds like everything is going well and hopefully this will be a magic bullet that we can have for this crappy disease. "

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