NC woman warns others of popular drug for women

Wake County resident Emily Page is on a national crusade after what happened to her after taking Lupron. (Credit: WTVD-TV)

Wake County resident Emily Page is on a national crusade after what happened to her after taking Lupron. (Credit: WTVD-TV)

RALEIGH, N.C. — Many women reported numerous side effects after taking a popular drug, according to an investigation by WTVD-TV.

Wake County resident Emily Page is on a national crusade after what happened to her after taking Lupron.

Page is the owner of the Artistic Abandon studio in North Raleigh. She explained that she had, “really debilitating cramps.”

“I would be throwing up from them because they were so bad. A doctor said, ‘Yes, you have stage two endometriosis,’” she said.

Endometriosis is a common health problem for women. It is an overgrowth of tissue outside the uterus which causes severe pelvic pain and irregular bleeding. It affects more than five million women.

Back in 2001, Emily says her doctor told her an injection would make the pain go away.

“My doctor recommended a course of Lupron, so I took it for four months,” she said. “I started getting cluster headaches, I couldn’t get out of bed.”

Dr. Tom Price is a specialist at the Duke Fertility Clinic.

“Depot Lupron is a long-acting form. There is one type that is used for one month, and then there’s another dosage used for three months that is used to treat diseases,” said Price. “Then there is daily Lupron, which is mainly used in fertility.”

In 2001, when Emily started taking Lupron, the drug’s package insert stated these adverse effects in its clinical trials: nausea, headaches, dizziness and neuromuscular disorders.

However, Emily says she never saw the insert since her doctor administered the drug, and she says he never warned her about the side effects.

“I couldn’t work. I couldn’t do anything,” she explained.

Dr. Price tells his patients about the side effects before he gives them the drug.

“The biggest health risk of Depot Lupron is bone loss,” he said.

WTVD-TV filed a Freedom of Information Act request with the FDA to find out how many women have complained about the drug’s side effects, and received a 223 page report.

It includes more than 550 reports from doctors and patients of adverse effects ranging from headaches to amnesia and convulsions, just in the past five years.

Lupron was approved by the FDA more than 25 years ago.

Dr. Price told the I-Team he counteracts side effects in his patients by adding additional medication, what he calls, “add-back therapy.”

“We discuss the side effects. We discuss how important it is to take the hormone add-back therapy to prevent bone loss while they’re on the medication,” he said.

Emily says she was given add-back therapy but it didn’t help.

The I-Team discovered several websites, with stories from women who call themselves “Lupron victims.”

Emily started an online petition 10 years ago. She said she heard from more than 1,000 women who say they suffered from Lupron.

Back at her Raleigh art studio all these years later, Emily Page is undeterred in her crusade to warn other women.

“It’s still something I struggle with, and I lost a big part of my life because of it,” she said.

The I-Team spoke with ABB-VIE, the current drug company which produces Lupron.

The company refused an on-camera interview, but issued this statement: “Lupron Depot has more than two decades of clinical experience and is an important treatment option for patients with endometriosis. The known risks of Lupron Depot are clearly outlined in the prescribing information.”

14 comments

  • Lisa R Moore

    I”m sorry she had such a bad reaction to Lupron. It helped me so much, the few side effects I had were worth it. I had hot flashes, nausea and a migraine for 3 days after each injection, it was much better than the severe pain and 21 day menstral cycles caused by the endometriosis I’d get the shots in series of 3 and wouldn’t have to worry about endometrial symptoms for 9-12 months.

    • Marilynn Hession

      ALL drugs have side effects and it amazes me people are surprised when something goes wrong! The drug commercials list a BUNCH of side-effects, but they make it sound like it probably won’t happen to “you.” I don’t trust any of them! I stick with holistic… much safer!

  • Bo

    Endometriosis causes severe, “knock you down to your knees” pain.
    If you don’t want to take the hormones with their really scary side effects, you’ll likely get an Rx for an antidepressant. Good luck getting anything that really works for pain if you’re female.

    • Janice Martin

      How very true. If a man says he is in pain doctors do whatever they can for them. If a woman is in pain they tend to dismiss it as just a” hysterical woman” or all in her head!

  • Sherry

    I too suffered with Stage 4 Endometriosis and was given the once a month shots for 6 months back in 2000. I suffered from all the same side effects…headaches, excruciating cramps, etc. The shots would always make me bed-ridden for 3-5 days and never helped relieve any the endometriosis never improved.

  • Vanessa

    I too was given the Depot Lupron but I was given 18 injections instead of the 6 he was to give me within a years time frame and I am severally suffering. I too was stage III and have had series of surgeries to try and fix what has been done. I wasn’t given a add back therapy I was a lab rat that was treated with little respect and dignity. When they are getting $655.00 an injection and he’s trying to get the most out of me before my insurance runs out he packed in as many as he could and I have in writing the protocol he was to follow after the surgery which stated he was to administer the drug for a 6 month period. Why he felt it was ok to give me so much I truly wonder to this day. I have more problems than ever and bone and joint in my hip and lumbar back and the S I joint are in constant pain. I feel like my spine is compressed and I have to pop my hip out of joint to get relief. He has ruined my body via that drug, had I know it was a male prostate chemotherapy drug I’d of never let him inject me directly in the back side of my hips. I now have and suffer from many disorders that elderly people have not someone my age would have. There are days I’m sick and can’t get out of bed or I’m hurting in my abdomen and run a slight fever have severe migraines it has ruined my young adult life and I went to a fertility specialist to help with my problem he told me to not worry that this medication would help so I would be able to reproduce… I have had so many lapro’s that I’d be at this point all most scared to. He shrunk my ovaries or caused them to shut down for a year and my question is what did it do to my eggs? If you caused me to stop and it was like my ovaries stopped producing it’s as if they shrunk up and my concern is the egg sacks!!!! What will the eggs be like if you dried them up for as long as you did will they be normal or will they turn out like the thalidomide cases???? You can’t guarantee my pregnancy will be a normal one and the baby will be too at this point I’d be scared what that medication has done to my eggs. The ovaries might look ok, but can you tell me that the Depot Lupron I was over dosed with hasn’t caused me any type of permeant birth defects???? Can you answer me that????? Please someone tell me I’d love to know because I’ve been waiting all this time and I’m ready to find out I just had another surgery lapro. and they said that the tubes and the ovaries looked ok!!!! Just ok!!!! that’s not good enough! What about the quality of the eggs inside??? No answer she couldn’t tell me as she skated out of the room! If there is anyone out there who has any answers I’d love to know. Please get back to me…. Thank you!!

  • Lore

    I took Lupron when I was a egg donor, and never had any side effects. This day in time you can expect it from most any kinds of medications, and should know that enough to ask the doctor about the side effects before you take it.

    • Vanessa

      Why are you even commenting on this topic since you had no problem there sweetie!! You should know when to keep your comments to yourself if you had no problem this blog is for people who had issues with the drug not people who didn’t get mistreated and used as a lab rat!!!!! I’m so happy for you!!!! Maybe you can donate some of your eggs to the egg bank for us woman who are now unable to or are afraid to conceive due to the over use of it. Do you have a brain or did you donate it too!!! Please this site is for victims not people like you….because seems like you didn’t get mistreated or overdosed on it and when you go to a Specialist you kinda tend to trust them that’s why they are called Dr’s and we are the patients…. Good bye Lore!!! Please find another site to voice your little opinion on… Until you’ve been through what I have at my age you need to find another site to visit….. Unreal!!!! I want to say something ugly but I’ll bite my tongue on this one!!! Take care and keep donating those eggs!!! Bye! Bye!!! V

  • Kimberly

    One of the issues I have with Lupron is that it has never, Ever, truly “cured” anything! Not the cancer it was made for, not our Endo, not infertility…nothing! I also have a problem with ” side effects”. Side effects go away, what this drug does, does not just go away! I developed 2 types of seizures, Jacksonian and Temporal Lobe, severe complicated migraines which led to a mild stroke. It killed my IGa, developed Von Willderband and Adies syndrome. Ohhhh and my Thyroid never turned back on. So thanks to this one drug I will be on many drugs for the rest of my life! That was 25 yrs ago, yup, I was clinical trial and guess what? My response NEVER got reported to the FDA until I sent it myself! Drug company only wanted the positive, non complainers, being sent in. I actually dare anyone to fully read that package insert! Read how they started with 155 women and 1/3 dropped out because the effects where so bad. Then read how of those 85 or so left 100% took narcotic pain medication the entire time. Guess what they approved lupron for? That’s right …pain…ha!!! Says who? How can they know? Idiots!

  • Lynne Millican

    What Dr. Price doesn’t tell his patients about Lupron (because he doesn’t know) is that serious data from the endometriosis clinical trials for Lupron Depot 3.75 mg was and has been hidden from FDA and public for 30 years – data showing “62.5% of patients had not regained baseline estrogen levels by one year after stopping Lupron”, evidencing “definitive evidence of long-term damage to ovarian function”, which would have body-wide adverse effects. Lupron’s manufacturer asserts in its label that Lupron-induced low estrogen is “fully reversible upon discontinuation of therapy”. Please see ‘Lupron and Fraudulent Data’ @ http://www.lupronvictimshub.com/lawsuits.html, ‘Hidden Clinical Trial Data about Lupron’ @ http://impactethics.ca/2014/05/02/hidden-clinical-trial-data-about-lupron/#more-1297 , and my ‘Open Letter to FDA’ @ http://www.lupronvictimshub.com/lawsuits/LVH_FDA_letter_March_17_2014.pdf.

    There have been at least 4 online petitions seeking investigations into Lupron, comprising thousands and thousands of victims asking for help – for links to these petitions, see http://www.lupronvictimshub.com/links.html. Unfortunately, no petition appears to have garnered any real interest or resulted in investigation. Additionally, the FDA has refused to substantively investigate Lupron’s adverse effects upon women and children (see above ‘Open Letter to FDA’).

  • Michelle

    I was diagnosed with endometriosis in 2009 and underwent surgery for removal of the affected tissues. Because of the location of some of the adhesions, my doctor could not remove all that he saw. He put me on Lupron for six months with norothendrone add-back. I asked him upfront of all side effects, especially weight gain. He said I could expect all effects of menopause. After two months of injections, my fingers suddenly swelled and have remained so. In fact, I was in college at the time and my professors thought me to be having an allergic reaction. I could barely remove my rings. I gained 20 lbs in an extremely short time, even when watching my diet, which I have not been able to get off. I began experiencing a constant feeling of having flu aches, retaining fluid, and great fatigue. I grew concerned and Googled the drug–which I should have done FIrST. I learned this is a CANCER drug not originally intended to treat endo! I asked my doctor why he did not tell me this up front and he replied, “because you wouldn’t take it if you knew.” Wow. I now have severe fatigue, almost-constant joint pain, and limb swelling. Both my general doctor and chiropractor/holistic doctor told me I have suffered permanent damage to my lymphatic system because of Lupron and my general doctor is keeping a hard eye on me because he believes I may have developed fibromyalgia due to Lupron. One of my doctors told me he took Lupron as treatment for prostate cancer and the dosage they gave me was much higher than his for cancer! I wish I had NEVER taken that drug. It has literally ruined my body permanently.

  • Sonja

    Emily, please don’t stop what you are doing. I had the Lupron injections between 2011 and 2012 and everyday since, I feel like I am dying. It is shameful what has happened to so many of us.

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