Lupron treatment linked to chronic pain

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beekro
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 4/23/2012 12:34 PM (GMT -6)   

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?


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 4/23/2012 12:56 PM (GMT -6)   
Hello Beekro and welcome to the chronic pain forum. I am so sorry to read what is going on with your daughter. I know Lupron is often used for endometriosis, many insurance companies require women to try those injections before they will pay for a hysterectomy. My sister in law was one of those people.

I did a quick google search just by putting in Lupron and cancer diagnosis and a few hits came up so you may want to give google a try and see what all you can find. I did not read any of the articles that were listed, just wanted to see if anything would pop up.

Has any of your daughters drs ever linked the Lupron to the cancer dx? As you can see I have very limited knowledge of Lupron and I think we have had over the ears a couple of women that had to try it like my sister in law did and of course it was short term too, nothing like what your daughter went through.

I do hope that you are able to get some answers to what you are looking for. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

beekro
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 4/23/2012 3:06 PM (GMT -6)   

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


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 4/23/2012 4:54 PM (GMT -6)   
Beekro, your daughter is very lucky to have you in her corner. I have to agree with you, the drs seem to be vague and that is something that is real bothersome to me. Perhaps it is because I am a mom too, but be what it may never give up on this or getting good care for your daughter. Keep on searching, you never know, you may come with some answers. One thing I have learned in my journey dealing with several health issues, we sometimes have to be our own advocate.

Just so you, we also have a Fibro forum and would love for your daughter and you to come visit us. The Fibro forum has a great group of members with a lot of knowledge about Fibro.

Good luck....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 4/24/2012 11:55 PM (GMT -6)   
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
Angelina.
age 41, Mom of 2 great kids (10 & 8), Diagnosed in 2007
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine(on hold)gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), clonaxepam (sleep), vit D, PRILOSEC, Vit B12 shots.

AngelinaATF
Regular Member


Date Joined Jan 2012
Total Posts : 135
   Posted 4/25/2012 12:03 AM (GMT -6)   
Wow - just re-read your post & realized we have alot same symptoms! I too had salivary stones (tumors really) - benign. And the severe joint pain, pain everywhere, fatigue, foggy mind - all of it! I think we need an attorney! A really really good one!
Oh & by the way it took 1.5 yrs & diagnosis I got (lupus) & Fibromyalgia ...I have always believed it was wrong!
Angelina.
age 41, Mom of 2 great kids (10 & 8), Diagnosed in 2007
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine(on hold)gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), clonaxepam (sleep), vit D, PRILOSEC, Vit B12 shots.

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 4/27/2012 9:55 AM (GMT -6)   
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
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw
Pelvic adhesive disease, IBS, SI dysfunction, arthritis, fibromyalgia, depression and anxiety, 11 pelvic surgeries for pain, adhesions, endometriosis, adenomyosis, ovarian cysts, and ovarian remnant syndrome.
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