Lupron

Glad2BeAlive

I'm so hoping someone else can share with me. I'm at a loss for words. I was diagnosed with DCIS stage 1 ER/PR positive high grade. Lumpectomy with seven weeks radiation. Started tamoxifen a few months later. After 29 months I have started growing large cysts on my remaining ovary. I recently underwent a cystectomy and my doctor has started me on lupron injections for six months. I have never felt more pain than I do now, bone and joint to only name a few. I asked to stop the treatment of Lupron but my doctor (who is amazing) advises it is necessary. Has anyone else had experience with Lupron

Moderators

Glad2BeAlive, so glad you found us, and so sorry that you are going through so much.

Have you told your physicians about this pain?

Here is a very short summary of Lupron on our site. One of the side effects being osteoporosis, and this may be connected with the bone pain that you are experiencing, but only your treatment team could really diagnosis and treat this issue.

Lupron

We hope that you hear from others here, and please keep us posted on what you find out from your treatment team.

Warmly,

The Mods

Glad2BeAlive

Thank you for replying. Yes they are aware of the pain but advised I had to stay on the treatment plan. It's affecting my work, family, and me. Thanks again for your reply, the loneliness from no one understanding is difficult, the reason why I found this site

daisylover

Hi Gladtobealive,

I have been on monthly Lupron injections for about 9 months. I will tell you that the days following my first few injections were awful - intense hot flashes, pains in my knees and ankles, and visible swelling in my legs and right side (ALND side). The first few months, I told my husband "I HATE LUPRON" on a regular basis. I tried to drink lots of water and push through the discomfort to ride my recumbent stationary bike. I feel this helps. I still can't ride for about 24 hours after... However, my body must be adjusting because the intense discomfort (swelling and pain) only lasts about 24 hours now. The hot flashes have normalized. And, I return to my new normal within about 72 hours! There is hope - I hope that you will have the same experience. (That said, when I was told that I would need to have Lupron injections for 5 more years, I agreed to proceed with an Oophorectomy, to avoid those 60 shots... I am 53 and ready for menopause) Best wishes

windgirl

I was on it during chemo for 4 months. Had some mild hot flashes but very mild, did not notice anything else going on, maybe they were hidden with the chemo side effects not sure. My doctor had given me many warnings saying I will even be irritable and forgetful but I did not feel that way. Maybe I should ask my friend and family

Cuetang

hi-- I've been on lupron for 1.5 years now. Weight gain, joint pain are just a few side effects. I know it's counterintuitive but try to see if you can move a bit more...it took some of the stiffness and pain out of my joints. Also-- have you asked if you could try an AI instead of tamoxifen while you are on lupron? Over time, it's gotten better for me, but I do still get stiff if I've been still for a while (like first thing in the morning or if I've been sitting down too long).

ChemicalWorld

Hi, I have been on Lupron for several months now, and have posted about my experiences with it here.  I get the monthly shot, not sure if that makes a difference.  I am pretty creaky on this medication, especially in the mornings, but get no pain per se. I try to remember to take my calcium and fish oil capsules every day, and find that helps a bit.