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Does anyone know of the potential severe long term side effects of using the lupron depot? I've been searching the net and all I have been able to find are the most common side effects like hot flashes and moodiness. My doc wants me to seriously consider this treatment but I am having reservations.
Your doctor or pharmacist should provide you with that information. You can, alternatively, try searching for Lupron's official site and looking for the prescribing information. All known side effects are printed there. You can also check the FDA's site. Just some ideas. Really, its best to ask your doctor and your pharmacist for this info so that you can ask follow up questions to a real live person.
I know women who are still suffering terrible side effects and illnesses 10 years after being off of Lupron! Doctors tell us that the majority of us will not suffer many side effects or that they go away when the drug is discontinued, but from reading several forums and Lupron victims pages, I do not believe that to be true.
I know 4 women from an endo site, who all went to their doctors around the same time to get Lupron shots and within 4 to 5 days, they were ALL experiencing many of the things on this list. Severe bone and joint pain were the worst and vision problems, confusion.... How can that be a coincidence?
I have found some very incriminating documents as well as startling information about Lupron that I think you should read before going back to your doctor.
Here are side effects of Lupron:
1. vasodilation - dilation of blood vessels
4. paresthesia - sensation of burning, tingling
6. pruritus - itching
7. urticaria - hives
8. arthralgia - severe joint pain, not inflammatory in character
9. alopecia/[Hair Loss]
10. condition aggravated
11. injection site hypersensitivity
12. dyspnea - difficulty breathing
13. hypertension - high arterial blood pressure
14. injection site abscess
15. injection site pain
17. chest pain
18. injection site reaction
19. asthenia - weakness; [asthenia gravis hypophyseogenea - severe weakness due to loss of pituitary function.]
23. pyrexia (fever)
24. weight increase
26. peripheral edema (swelling of tissues)
27. abdominal pain
28. ecchymosis - a purplish patch caused by blood leaking into the skin
29. Amnesia - disturbance in memory
30. fibromyalgia - muscular pain
31. tachycardia - rapid beating of the heart
32. amblyopia - dimness of vision
33. syncope - fainting
34. menometrorrhagia (uterine bleeding)
35. palpitations - forcible pulsation of the heart
36. bone pain
37. Edema [swelling]
38. Insomnia - inability to sleep
39. hepatic function abnomality
So far I have not been able to try Lupron because of my migraines. I have considered it and read up about it. I actually joined Hyster Sisters specifically to find out about Lupron.
There are women who do find that Lupron offers them the relief they are looking for. There are side effects as with any medication and surgery. We each have to weigh the possible pros and cons for us and decide what might be best for us. For me, the migraines were actually a huge issue so I had to decide to live with the pain and not try Lupron.
You can do a site search for Lupron and find threads discussing this topic. Some of the women on the site who have used Lupron successfully actually used it to shrink fibroids prior to surgery and some of them post that they did not have lingering side effects. Other women on the site have found that they did have a lot of side effects using Lupron.
You may want to talk to your GP about Lupron before making your final decision. And do keep in mind that generally people are quicker to post the negative than the postives. Often if we are happy with a product or medication we don't go looking for a place to tell how wonderful it is. On the other hand, if we have problems with a medication or product, we just might take time to find a place to register our complaints.
I do not want to sway you in either direction with regard to Lurpon since I have not used it myself, but I would suggest continuing your research and see if you can look around the site and find women who have used Lupron and see what they might have to share.
Best wishes to you for your decision and lots of S!
I did (3) months of lupron shots before my hyst to help shrink my fibroids for a less invasive surgery. Lupron does cause temporary chemical menopause by helping to decrease the production of estrogen in the body...and estrogen helps produce fibroids ~and~ endo.
Would I do lupron again?? In a second...to have the results I got with my LSH, my less invasive hyst.
Addressing the list posted by Gogfish89...estrogen can cause some side effects. My side effects?? I had hot flashes and night sweats and I lost interest in sex for awhile. No weight gain...I actually lost some weight. I also had pain at the shot sight for a couple of days because for me...it was a shot. I had the same reaction when I was a kid getting shots with a GP.
I saw a similar list of side effects online ~before~ I started lupron and I realized I was in good shape, lupron was also used to treat other health issues...such a prostate cancer...in addition to endo and fibroids...and my Dr. recommended I do lupron...and I trusted his judgment.
And...when I experienced my lupron side effects...I knew lupron was doing its job. The lupron shots also helped to stop my periods....which were getting scary-heavy...so that made life easier. Lupron also helped to bring my blood count up before surgery...and when my fibroids started shrinking...it reduced my pelvic pressure that I had been experiencing almost non-stop before taking lupron. That made me physically-feel more comfortable. Right before my hyst...I felt like I did not even have fibroids.
I am 3 1/2 yrs post-op now and I have not had any long term side effects from lupron. All my side effects ended right before my surgery and I have not had a hot flash or night sweat since.
A footnote...both my sisters *and* a close friend all had hysts for fibroids in the last two years and THEIR Drs also recommended lupron before surgery. All were pleased with their lupron success and they have not had any long term side effects.
Lupron is a temporary band-aid on a health issue like endo...and if it can help with a Hyster Sister's ~quality of life~ in the right now... while living with endo...why not?? Just my opinion.
Lupron is not for everyone...that is true. So...just consult with your Dr...keep doing all the research you can...and in the end...do what is ~right~ for you. That is what is most important.
The only long-term side-effect that I'm aware of is a decrease in bone density ~ osteoporosis ~ which is why Lupron is generally only recommended for a maximum of 6 months although, obviously, there are always exceptions.
Yes, there are side-effects as Lupron induces a temporary, artificial, chemical menopause. The side-effects are those of menopause. I experienced hot flashes (no night sweats), aching joints and dry skin, but it was nothing I couldn't handle. I was told these would disappear after stopping the drug and, for me, this was absolutely true.
Lupron is prescribed for all sorts of different reasons and can have varying rates of success. In my case, my fibroid reduced in size by two-thirds ~ an amazing result ~ and allowed for a safer procedure.
As ((Weiser)) touched upon ~ "good news is no news!", resulting in the negative outweighing the positive. But, if you try a "site search" here, you'll find many posts about Lupron and, hopefully, a balanced view. :balanc:
Wishing you all the very best and hope you're able to make a decision that's right for **you**.
I was place on a 6 month treatment for Endo 10 years ago, i suffered hot flashes and moodiness (I didn't see the moodiness) My Ex husband claims it was the cause of our divorce and I refused to believe it. Well 2 months before my LAVH I was treated with it again. Much diffrent this time I have to say for my it was horrible I felt like i was losing my mind. I would yell I would cry at moments I expected my head to spin around like the exorsist. I started to see what my ex saw happen to me. I started to research and I found this (it was already to late I had recieved my doses) http://www.askapatient.com/viewratin...10&name=LUPRON
I am going to be honest there are extremely scarey experiences in there. Now you have to remeber not everyone reacts the same way everybody is diffrent. The first time for me wasn't so bad, the second time for me I drove doctor without an appointment crying telling her that i lost my mind. You know what they can not take the drug out of you and you just have to wait for it to work its course. Today I was told I need to see a theropist for panic attacks i am having. I have thoughts like is it still from the lupron or is this just part of the recovery of my surgery? I don't know.
Hi, I am glad to hear that Lupron helped you and you feel better today. I know that it has helped some women get the relief they are looking for, but most say the benefits wear off, when the drug is discontinued.
I used to tell women, well, it's your choice, but it can have bad side effects, just research it. I have decided for myself that even if there is the smallest chance I could suffer like some woman have, that it is just not worth the risk and once it is in your system, you can't get it out.
Since finding the documents I have recently come across, I now feel adamant about telling women to avoid this drug! I used to feel that I did not have the right to tell them what to take or not to take, but after finding so much evidence that hardly anyone has access to, now I feel otherwise. I think even if it "helps" for a while, things may happen later to your body. I want to be an advocate to help get this off the market. I've also read on a RedCross site that you are NOT allowed to donate blood plasma for 4 months after taking Lupron, but yet doctors encourage women to try to conceive 2 months after taking the drug. Does that mean that all these babies are being exposed to Lupron?
I just do not believe that there are enough long-term studies of this drug to determine whether or not those women who were "helped" will later develop major health problems in the future.
One example, is I found a study from the pharmaceutical company that said Lupron caused pituitary failure and pituitary tumors in lab rats, but it's been yet to be determined if this will occur in humans.....Soon after I posted that on another forum, a woman posted that 6 years after taking Lupron, her pituitary started to fail and she now has many malignant tumors on her pituitary gland. She is only 34. Her doctor denied it could be from Lupron. He said one thing had nothing to do with the other. In the Lupron leaflet, it states that the chemicals in Lupron attach to the pituitary gland.
Another friend that I have become close to on another forum took Lupron, suffers from severe bone pain still after 3 months off of Lupron and while driving her children to school one day, temporarily lost vision in one eye for about 30 seconds. It went totally black! She said if she would have been on the highway, she would have for sure had an accident. She relayed all of this to her doctor, crying hysterically. Her vision is still affected from time to time.
She recently requested her medical chart so she could go to a new doctor and she saw that her doctor had written in her chart, "Everything is going well, no complaints from the Lupron." She felt so angry and betrayed! I have found other women with similar stories, where their doctors say "Everything going well on Lupron...." even though they are having major problems.
That to me is very suspicious. Why would they do that? It is also suspicious how many doctors have literally bullied me to take that drug, spending over an hour saying, "Well, if you don't want to take this, you must not be in the pain you say you are in!" I have not experienced that kind of pressure to take any other drug on the market.
I found an official court document from Washington of testimony of a nurse testifying to the Senate about all of her illnesses from Lupron, her great concerns for women, doctors from the drug company falsifying 80% of Lupron studies....things that are very disturbing.
I have a new document that states 50% of women cannot tolerate Lupron side effects and still suffer side effects after 5 years of discontinuing the drug. This study was conducted by the Endometriosis Research Center. The warning leaflet says only around 5% cannot tolerate the drug....that is a big difference!
Another thing I've read is the drug company employees were told to target women in support groups (fertility and endo), because they are desperate and will try anything to get well. That company has been found guilty of bribing thousands of doctors to prescribe it back in 2001 in a RICO suit (Federal Organized Crime and Racketeering), had to pay an $875 million dollar fine and is now considered a "Criminal Enterprise." I know this is a lot to take in, but every bit of it is true. I can send you the documents I have if you like.
I thank the Lord that I never gave into taking this drug and I pray that you do not have any health conditions in the future from taking it. Everyone deserves hope to get well from this awful disease, but they must find a safer and more effective way of helping us, without adding to our pain. <oops! email address removed for your security>
As you can see, there are many opinions regarding Lupron! I have not ruled it out completely for me as it could be something I have to consider for current or future endo issues. As I mentioned, my decision to not use Lupron was based on my migraines. When last my GYN and I spoke about Lupron, and I verified with my neuro, we decided that my migraine pain and problems are far worse than any endo pain I have dealt with. So for now I am playing the "wait and see" game.
I did just recently read on the site that one member was told that Lupron would not affect her migraines and it didn't! So if Lupron comes up again for me, I will ask more questions! Hopefully I don't need to use Lurpon but with endo in my body it is could be a real need in the future.
Lupron was suggested for me to see if my pelvic pain would ease or go away. If it had, then we will know without surgery that endo was the culprit and we could have planned our next steps from there. Surgery is not a good option for me so were looking for better diagnostic tools for me before taking a major step.
I do wish you all the best as you try to decide what is right for you right now. We each have to do what is best for us. Talk to your doctor about the pros and cons for you and seek a second opinion if wish.
Thank you for taking time to try to inform our members about Lurpon. The site guidelines state:
You agree to provide reputable, verifiable sources for statements of medical fact that are not common knowledge, especially as regards discussions about hysterectomy type, hormone therapy, treatments for medical conditions and similar topics. This ensures visitors receive up-to-date, accurate information on these topics.
To help our members be more informed, could you please provide links to the information you have provided above? The links do need to be trustworthy and reputable sites in that links to other forums or commercial sites are not acceptable.
Thank you again for your time and I look forward to reading through the links to learn more!
I actually just started Lupron 2 days ago and had to weigh the good with the bad. I have MS and endometriosis (I've already had a hysterectomy but had one ovary left). I have a large cyst on the existing ovary, lots of endo and any surgery to remove the ovary would be very risky for me (I have had blood clots and cannot take HRT). I have to work with the Lupron and stay positive.
Because of MS, I am on an antidepressant and am also on add-back with the Lupron. Both of those things should help to even out the negatives.
It was a tough decision for me because you always read about the negatives (and that can be really dangerous for someone who really needs the medication). I appreciate reading the positives from people who have roughed it out for the better good.
I am hoping for some good pain relief and a non-exacerbation of MS.
Anywho -- I just wanted to visit and say hello. I'll be sharing my experience but know that I am keeping positive and will treat symptoms as they come.