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All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
FDA investigation for Lupron
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deal14 posted:
Lupron Under FDA Investigation!!!! Las Vegas, NV (KTNV) - A widely prescribed and highly toxic drug used to treat endometriosis in women and prostate cancer in men is finally coming under federal scrutiny. This in the wake of a multi-part Contact 13 investigation into devastating side effects of the drug Lupron Depot.
When you look at a photo of Christina Smith three years ago, you will see a young, vibrant 18-year-old ready to take on the world.
"I wish I was her again," Christina says wistfully.
Today, despite having just turned 21, Christina has a much different life.
"I can't work. I can't go to school. I can't do anything."
She was given a single injection of Lupron Depot in 2007 to combat what her doctor thought was Endometriosis, which she recently found out she never had.
Now, she says she's even worse off because of the drug.
"It's devastating. Her whole life has changed," says her mother, Nancy Thurman.
"I'm hurting. My bones. My muscles. My joints. I'll get migraines, nauseous, really bad anxiety attacks where I just don't want to be here anymore," Christina says, holding back tears.
"It changed," Nancy says, "from a good life to feeling like I was on suicide watch every day."
Women across the country have reported to Contact 13 and the U.S. Food and Drug Administration about the devastating side effects of Lupron Depot.
"It's a terrible drug. It's a drug that destroys your life," says Marne Rafferty, a Chicago resident.
"There's days that I panic and my husband has to come home because I feel like I'm gonna die," says Rachelle Fenner of Las Vegas.
"There are some days I just burst into tears just thinking about getting out of bed," adds Mary Orseno, also of Las Vegas.
The FDA is finally starting to take notice of patient claims--claims backed up by numerous peer reviewed medical articles, but previously not acted on by the government.
The agency is conducting a safety review of Lupron as a prostate cancer treatment due to possible increased risk of Diabetes and cardiovascular disease.
In women, they've identified "potential safety issues" regarding Osteopenia--which is premature bone density loss and thyroid gland disorder.
The latter is a risk Lupron manufacturer Abbott Labs doesn't list on the drug's warning label.
Christina Smith says she's recently learned her thyroid is failing.
We contacted Illinois-based Abbott Labs for comment and they sent this written statement: "The known risks of Lupron are clearly outlined in the prescribing information. We regularly monitor and evaluate post-marketing adverse event reports and update prescribing information as appropriate, in consultation with the FDA."
Christina's doctor only told her...
"To expect the menopausal side effects. That was it."
As for what the FDA is doing now...
"It's too little too late and it's a good step, but it's only what's possible. Are they gonna put it out all the way? Are they gonna stop this? It's not just a couple hundred people. It's thousands of women."
"I would like to see it completely pulled from the market," her mother says. "I don't know that it's a benefit to anyone."
There is also now a class-action lawsuit that was filed in April in New York over Lupron.
The lawsuit accuses Abbott labs of misrepresentation, concealing risks, failing to adequately test Lupron before securing FDA approval, and failure to warn doctors and patients of serious, long-term health problems associated with the drug.
The FDA hasn't drawn any conclusions at this point.
They're continuing to evaluate the issues with Lupron to determine the need for any regulatory action.
We'll keep you posted on what they decide.
In the meantime, we'd like to hear from you.
If you've had an experience with Lupron, send us an e-mail at 13investigates@ktnv.com .
Reply
 
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hopeful2218 responded:
There have been many class-action law suits on Lupron. My pamphlet does list all of these warnings. I do not know if each state varies. But sounds like she took lupron from a bad doc. No Endo diagnosis...no addback....no DEXA screening, no thyroid panels every 3 months. To those on Lupron..these are the tests your doctor should be requesting every three months.

But thanks for the info and link. Lupron can devestate people when administered incorrectly..and I do have some of these side effects...but they have all been chalked up to Fibro, RLS etc. Perhaps the link in these diseases are the Lupron. I will keep a close eye on this.

But ladies, please don't lose it if you are on Lupron..our motto..we all are different...and react differently to meds is still holding very true.

DEAL, Where have you been...you come in and dump bad news on us!!!! Come stay awhile..how the heck are ya? We miss you!

xoxox's and thank you for the info..of course ladies, if you have these effects...reply to the link and contact the FDA.
 
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deal14 replied to hopeful2218's response:
haha yeah thats what I do! Ive been lurking mostly. I will say, I think MOST docs arent using Lupron as it should be used really, or dont know about it as much as they should. My symtoms are also chalked up to fibro yet I didnt have this many issues before the Lupron so I find that very interesting. I never had any screening the whole 6 months I was on Lupron either and I many women I have talked to with Endo have said the same, they just go in and get the shots.

As for me, I have been better. Im having a really rough time, I just ended my job recently due to my body not being able to handle it and other things with the job itself so I feel kind of like a failure. DH may be going to another state for work(if they call in a week) which would be great for the money because we have none.... but at the same time Im scared to have to do everything alone for months at a time. My insurance just ran out so no more docs for a while, I was in the middle of seeing a GI to see if some of my pelvic pain was caused by that stuff and am STILL waiting to get some blood panels back, even though I should have the results. Ugh. Had do a bunch of tests for this GI that sucked and didnt tell us anything(sigmoidoscopy, flouroscopy,etc). I went in a gave my 2 cents to this rhuem. office that treated me horribly, because I am not a teen anymore with endo issues stupidly going into things, I am an adult and want to be treated with respect especially for the amount I am paying in medical bills! Im off my birth control(have been for a couple months) and yesterday my period started.... Im in a good amount of pain. Thats my life right now..... oh and my brother is coming home from Iraq in a couple weeks so I am looking forward to that, and I will get to see my neice/nephew again since its been a while because their Witch of a mom hates me so I dont get to see them until my brother gets here, oh and they announced they are getting divorced, hooray! Just lots of stuff has been going on and it takes a while to type... how are you?!
 
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martiesgurl responded:
Hey ladies, I was reading the article and I'm just wondering where the pictures are. I tried to google the article and I found it but no pics....
~Sadie~
 
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hopeful2218 replied to martiesgurl's response:
LOL sadie, they are just pic's of the girl before and after...imagine her hair messy and no makeup. Bam..picture. That was in the paper I believe...leave it up to Sadie to ask for the picture for proof!!! lmao.

Well deal, I want to see you lurking more often! We have missed you...and I hope things get better for you. After a full year off, I'm back at the grind..and already my body is saying NO NO NO! So hang tight and know that everything will work out..and as aways you are in my thoughts!!!

xoxoxo's
Amanda
 
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martiesgurl replied to hopeful2218's response:
Haha!!! Yes I want proof silly! Would you have ever doubted that about me??? And if I didn't ask for proof, you would think something was wrong with me. So no pic huh? So where's that leave the people on Lupron? If they decide it's unfit for people to take, what the ones that are in the middle of a 6 month therapy? And am I going to have issues? Well besides the ones I already have... haha God I'm funny today! Okay well deal-nice to see you, or hear from you... Missed you.
~Sadie~
 
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deal14 replied to martiesgurl's response:
Thank you both for missing me, makes me feel like I mean something to you! Yeah I will start leaving little tibits here or there, Everything will work out and I just have to remind myself that I am thankful for what I can do and what I do have now and things can change in the future if need be.
 
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carrieadelong replied to deal14's response:
Hey Deal - didn't you tell me you had IC? Have you been on Elmiron?
 
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deal14 replied to carrieadelong's response:
No, they tested me for IC but I didnt have it I guess but I pee alot.... so for a short time they had me on Detrol LA.... didnt make a difference I was told it has to do with my dysfunctional pelvic floor muscles. Why do you ask?
 
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carrieadelong replied to deal14's response:
I just thought we had discussed it before. I am irritated that my IC med is setting off my ibs ... and i can't eat some of the foods I need for my IBS diet (like yogurt and soymilk) because of my IC diet. Then sometimes I don't want to eat at all. I thought I saw you on the IC page too ... there is no activity on that page, so I was just looking for a kindred spirit in this aspect of my pelvic mess!

Lucky for you that you don't have to take Elmiron.
 
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painterswife96 responded:
I took Luperon 3 seperate times, the first was for 3 months, the second for 6 months and the 3rd for just one month. the side effects I endured then was bad enough but the illnesses that I have now are life changing. In addition to those times I had numerous surgeries for the removal of severe endometriosis. I now have nerve damage and adhesions from those. But in addition I have breathing problems, Fibromyalgia, chronic pain, spinal stenosis, degenerative disc disease, vitamin d deficiency disease, osteoarthritis in both knees, elbows and hips. No one told me about the long term side effects or possible problems that have changed my life. I am 48 years old and unable to work or do just about any of the things I used to be able to do.
 
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miriamtracybrown replied to painterswife96's response:
I read thru suzanne somers books that a lot of symptoms you sound like you have might be an underactive thyroid. Lupron damages your thyroid.

I tried the synthetic thyroid support levoxyl. My body didn't tolerate the aluminum in it so I purchased Thiroyd by Greater Pharma in Thailand thru ebay. I did have a doctor read my thyroid blood work ("TSH, Free T3, Free T4 and Vitamin D 25 Hydroxy" for underactive thyroid) which I had my primary care doctor order.

I also found that my eyesight aged by about 10 years from 6 months on lupron. They never even gave me a pamphlet on the risks.

I was put on 6 mos. injections by doctor for fibroids. didn't work enough i still needed surgery.
Tracy
 
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jamieallyn34 responded:
Are they doing anything I love in Florida and I have the exact symptoms as your daughter.


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