Came across an interesting article from the National Women's Health Network about a drug called Lupron that's being used to treat endometriosis, fibroids and as a part of some fertility treatments.
According to the article the drug was originally used to treat prostate cancer in men and can have some side effects in women that include:
*Tingling,
*Headache and migraine,
*Dizziness,
*Severe joint pain,
*Difficulty breathing,
*Chest pain,
*Nausea,
*Depression,
*Emotional instability,
*Dimness of vision,
*Fainting,
Weakness and many, many others.
The makers of the drug say the side effects only last about six months, however. Some women say that's not the case.
Has anyone used this drug? If so, what has been your experience? Would you recommend it?
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I was diagnosed with Endometriosis in 2006. I've had a laproscopy the first time in November '06, and got my first dose of Lupron (the one month 3.75mg dose). It worked great for pain management at first, there were no signs of a period. The only thing that bothered me was the night sweats, the hot flashes in the day, the moodiness/crying spells and a loss of a sex drive. I continued to get the injection for months to come, and a year from my first surgery, i had a laporotomy done, The endometriosis cells had grew back twice as bad. So instead of having them cauterized, they cut each cell out and cauterized the wounds. I was given a higher dosage of Lupron to hopefully "nip it in the bud" and prevent the endometriosis from coming back. The higher dosage worked for a couple of months then I began to hemmorhage. The pain was worsening and I began to feel pain in my hips and knees. The lupron injection was no longer working for me so my doctor had switched me to the Zoladex implant (A gel-like capsule that is injected into your belly fat, which slowly releases over a 3 month period).. Zoladex worked GREAT. ..until I could no longer afford it, I had no medical coverage and it was costing 1300 $ every 2.5 months. I was also unable to work at the time due to the chronic pain. My doctor then put me back on the Lupron, but I still was having periods and pain and decided to come off of it. To this day I still havnt had a period, it has been 6 months with no Lupron, or any type of birth control. I am 22 years old. I am very upset and distraught because not only am I not ovulating (I've also taken countless pregnancy tests), But i have CHRONIC pain in my hips and knees... I dont think the Lupron is beneficial in the long haul what so ever. I used to be a healthy and active twenty something year old, and now I sleep with a pillow between my knees at night for the pain. I also can't walk long because it feels like someone hit my knees with a sledgehammer.
PLEASE. Reconsider when thinking about trying this drug, it needs more research to be done on it... Stop using us as guinea pigs. We've suffered long enough,
October 22, 2010 - 9:08amThis Comment
I'm getting ready to take my 2nd of 3 shots (stretching over 9 months) of lupron, to treat severe endometriosis with severe pain and mainly, infertility. I've been through fertility treatments and none of them have worked. I've experienced very frequent hot flashes and sweating (I use my husbands deoderant now), and some abdominal cramping and fullness, but thats about it. My pain and symptoms really increased the first 2 months after the first shot, but seemed to have toned down to the point I can work without interference. I am an L&D nurse. I'm now functioning without pain meds, which i was on for several months. I am hoping to finish my rounds in January and start trying for a baby. My doctor told me that once i delivery my baby, provided I do not want more children, my endometriosis is so severe I have to have a hysterectomy. I'm ok with this as long as i get my baby. The side effects are worth it as long as you have a doctor that believes the pain you are in and is willing to work with you. This is the only avenue i have left to conceive...wish me luck and send prayers.
May 25, 2010 - 2:15amThis Comment
Thank you for the helpful info...I had a partial hysterectomy 2 weeks ago and had several fibroid tumors removed...they were large the size of a grapefruit...I also knew i had several larger tumors one 14" long against the back left pelvic wall attached to a ligament with another one growing down my cervix. The Dr. ask me to wait 4mo take Lupron and have a second surgery after the tumors shrink then have another Laparscopic surgery...I didn't feel comfortable taking Lupron so I decided against it mostly after reading the side affects...I will be scheduling my second surgery in one month this time with him doing an incession on my pubic area so he has plenty of room to remove large fibroid tumors without problems of damaging my organs and having room to remove away from the pelvic wall...He will also remove my cervix but leaving my ovaries so I don't go into Menapause...I thank you all for sharing your experience and feel comfident and comfortable knowing I am doing the right thing not using Lupron. I just turned 44 but suffered painful long periods from the age of 12 years old..Happy to get rid of it and not go into premenapause! I will keep you posted after my second surgery! Good luck to everyone with any health issues! Sincerely Eve
March 14, 2010 - 11:04pmThis Comment
I have heard that birth control is an option but we have been trying to get pregnant for a few years so BC is out for us. Everything I have read about BC all leads back to the same result with the endo coming back to show symptoms in its natural cycle every 3 - 4 years. It's true that every woman is different with endo and whether or not there symptoms present and how severe. Mine are severe but still I would not ever be persuaded to go back on Lupron. I will be getting a second opinion about surgery, in the meantime, I am going back to acupuncture. It really changed my total health and the difference in my periods and endo symptoms was incredible and immediate. I'm fortunate to be back on my feet financially to be able to return to that kind of treatment. There ARE some insurance plans that will cover acupuncture in the same kind of way that chiropractor medicine is now covered with a set number of treatments per year. I strongly encourage women to find out if they are covered in their plans and if not to consider going even once per month around the time of their periods or whenever the acupuncturist recommends is best. Even once per month brings a noticeable difference.
December 30, 2009 - 11:22amThis Comment
I felt so helpless after getting diagnosed with moderate endometriosis, still very confused which option to choose as a treatment. As my doctor says i have two 1 to try lupron and 2 to have hysterectomy done as i have three children and at 38 dont want anymore. i already suffer from migrains and back pain almost all the time, but also very scared to go into menopause right after surgery as my overies would also be removed.... any one with any experience or suggesion would be much appreciated.thanks
January 26, 2010 - 12:45pmThis Comment
Hey! Me too - only 2 options: lupron or hyster/oophorectomy. I want to try lupron first. Please respond with which option you chose and what was your experience.
April 7, 2010 - 6:39pmThanks!!
This Comment
I contacted the Endometriosis Foundation of America (founded by Padma Lakshmi) and inquired about they knew regarding a link I suspected between Lupron and the first panic attack I ever had in my entire life, which by the way, was severe. I was not suprised by their knowledge about a link. Treatment is a personal and difficult choice as endo is still the most misdiagnosed and mistreated condition, even by well meaning doctors. I have found a lot of information that helped me make treatment decisions by reading "Endometriosis for Dummies" (no kidding...it's a good book) and through contacting www.endofound.org. They may slow to respond but once they did, boy it was loaded with information and resource suggestions.
Personally, I have decided to go with accupuncture. The more reading I do the more common stories of health and pain free living comes from women who committed to it. My periods are night & day different. Light, pain free - I don't have to wear a gigantic overnight pad for 7 days of the month anymore and I barely have noticable cramps. My practioner prescribed an herbal remedy to me intending to litterally disslove my cysts. I am praying that works for me as it did exactly that for a friend of mine. Her cyscst dissapeared after introudcing a prescribed herbal routine by a licensed practioner.
Accupuncture is a commitment, financially as most insurance plans do not cover it but some do! Check with yours to find out, more and more are covering it just like chiropractic medicine is now covered.
www.endofound.org
Endometrosis For Dummies - book
Women's Bodies, Women's Wisdom - book
These have been major resources for me.
January 26, 2010 - 1:02pmThis Comment
Thanks for sharing your experience about Lupron AND offering an alternative. Is birth control an option to help slow down or prevent the spread of endo? Was wondering if you've had second opinions from other doctors?
December 30, 2009 - 7:02amThis Comment
I realize this thread began several months ago but there are woman like me out there researching treatment for endometriosis who will stumble upon this thread for a potentially very long time - so the more feedback the better. I strongly discourage Lupron. I was diagnosed with end 8 years ago and today learned that I will need a third surgery for the removal of cysts. I have needed surgery every 3 years - almost right on the dot. The first time I did Lupron injections twice in 6 months. I had what I thought was a pretty terrible experience with it including suicidal thoughts for the first time ever in my entire life. Never before the Lupron and never since therapy ended have I ever had suicidal thoughts. I also went into full blown "false" menopause with all the symptoms our mothers and grandmothers have ever warned about it. As bad as all of that was I did not suffer long term effects like some women in this thread. And it's really a pointless therapy. It's intention is to keep the regrowth of endo at bay but it is NOT a cure. You're endo will return....there is no cure for endo. Lupron slows down the growth but not by long. An extra year without sypmptoms, two years if your lucky - three years if your blessed...but it will return. I have the most success with acupuncture. The noticeable change in my symptoms was immediate but I stopped going when the economy tanked and my husband was laid off from his job. We're back on our feet and I'm considering going against my doctor's wishes and saying no to a third surgery at least while I return to acupuncture and track my health that way. I just can't deal with going completely under anesthesia for a third time in 8 years...it's dangerous.
December 29, 2009 - 8:54pmThis Comment
I was on Lupron for 12 months over two years ago for endometroisis. While on treatment I did have some hot flashes and some extra shedding of my hair but other then that I felt wonderful! No periods, no pain for the first time in a long time. I've been off almost 2 years and the symptoms have returned along with cysts on my ovary. My OBGYN has recomended that I do Lupron for another year so I am due to have my first injection in a few weeks. I'm so scared again even though I tolerated it so well the first time almost everything I read is negative. It seems so many women have had serious and long term sickness from this and I am really scared.
September 22, 2009 - 9:31amThis Comment