Lupron treatment linked to chronic pain

Has anyone heard of the side affects from Lupron (Chronic Pain) surfacing after a few years?  Like a delayed reaction to Lupron?  Has a cancer diagnosis been linked to Lupron treatment?

 

My daughter's story

 

Lindsey, now 28 was given Lupron injections daily for 6 years ( ages 4-10yrs) to delay her early signs of puberty (Idiopathic True Sexual Precocity).  When she was 15 she was diagnosed with ALL  (Leukemia) and went through 28 months of Chemo treatment.  After Chemo she was severally fatigued and seemed to have diminished cognitive abilities. She was put on Aderall when she was 18 and has since relied on that to help give her enough energy to get a job and lead a life.  Oct-Nov 2011 she went through 4 surgeries for stones in her salivary glands. In Dec 2011 she began to feel fatigue which could not be relieved by the Aderall.  In February 2012 (and since) she has been having severe joint pain, dizziness, hot flashes, foggy mind, more problems with cognitive skills etc.

 

We are searching for a diagnosis and I found this website…any thoughts?

Dear Susie, Thank you for your reply. Her doctors have not linked Lupron to any of her issues.   However, the internet is plastered with those complaining of Lupron side effects (similar to Fibro/chronic pain) but nothing regarding cancers. There are many claiming health problems directly following treatment for endometriosis and prostate cancer which are just a couple or maybe one injection like your sister-in-law.   I am searching for someone who has a delayed reaction after years of treatment which I believe   would only pertain to those with   precocious puberty.     Perhaps we are searching for a reason that is not there and like all of her other health issues it just IS.   Her doctors feel that she has PTSD or a psychosomatic illness, but that is just a bit vague for me.   So I'll keep searching.   This is my first post on a forum and I am so pleased that you commented. It gave me a sense that someone is listening…reading. You have been a blessing to me and I hope you find what you are looking for during your time in this forum. Beekro

Oh my gosh! I was treated w Lupron for 3+ YRS for stage 5 endometriosis (it was the only way to "preserve" my organs so I could conceive) but I have long-suspected that Lupron was the reason for all my problems. I am a Pharmacist & was aware of all the side effects but chronic pain was not one of them (this happens alot though - some side effects don't come out until yrs later). Anyhow, between the pain & fatigue from pain I haven't been able to work for 6 yrs! And..sadly, I strongly distrust my own profession! I feel as if we (as patients) are not given the whole picture & I think we should look into a lawsuit - not class action - against manufacturer of Lupron. Prob is ...how can we PROVE it caused it? I guess if enough ppl step forward, maybe we can make a case.
Anyhow, my heart goes out to you & your daughter! All you wanted was a safe treatment & this is what you got! Angelina

Beekro,

I had one Lupron shot last August or so in an attempt to decrease my pelvic pain from severe adhesions and severe endometriosis along with ovarian remnant syndrome. My doctor pulled it out as a last resort because my right ovary reformed 3 times and began forming cysts that were moving the adhesions which moved the bowel and bladder, diaphragm, and this caused the adhesions formed on the muscle wall to cause extreme pain. I was getting married in October and wanted to keep from having the surgery to remove the ovary again because of the reformation of adhesions, risk of complications and increased pain that came with every surgery. I never had a 2nd shot. Lupron made me miserable. If you so a search on the page you can see some of my posts about what I went through.

My doctor said it was last resort because it would stop all hormone production. He said it came with few side effects, mostly just menopause symptoms, and not to trust the shocking side effects on websites. He had 12 patients in his care who used Lupron that had milder cases like mine, and they had little to no side effects. He lied, and after the shot caused my misery, refused to return my calls. He performed the last surgery 3 weeks after my wedding and then discharged me from his practice with frozen abdomen wishing me good luck in my search for an "adhesion specialist that would be willing to try to help fix my adhesions, but if I found a good one would I please tell him so he could pass the information to his other patients who suffer in the same way I do? " That was a horrible thing to do to me. He even had on my final record that nothing any doctor could do at this time would help me in any way, and he felt that my regrowing ovarian tissue and severe adhesion and endo reformation may mean that I am unable to be treated other then medical management. He also felt that I exaggerated my Lupron side effect symptoms.

I had bone pain, joint pain like I have never had before and I have mild RA. I was so depressed I had no interest in my own wedding I waited 2 years for and worked hard doing flowers and all the necessary things. I felt sick every single day, cried and raged and had no peace. I still have the bone and joint pain. I had previous history of depression, so things are still bad when they had been better before the shot. Immediately after the shot I had memory loss, trouble recalling words for things, trouble comprehending what I read, and fatigue. My doctor said all of this was normal and not to be worried about. I also had the normal menopause symptoms I expected, but the moments of rage and the constant crying was really tough and not what I expected with menopause.

I hope your daughter improves. She is very lucky to have you helping her through this. Keep searching for long-term side effects and please keep us posted on your daughter. I truly believe that Lupron increased my problems instead of decreasing them as the doctor hoped. I also know that the bone and joint pain, the memory issues, the tiredness are here to stay and I am now diagnosed with fibromyalgia along with everything else.

Good luck, don't stop looking and trying and asking questions. I really believe that Lupron should not be used without complete confession and long conversations of the side effects versus the benefits before administering the medication and more research before continuing to treat any patient with Lupron.

Mindy

I lived