Stopping Lupron
I have been taking Lupron and AI for nearly 5 years. I started at 49 and next month will be 55. My side effects have been really bad and I honestly can’t take it anymore. I have noticed that my symptoms depend on days of month in my Lupron cycle. I have a few good days before the shot and a few good days after, but then experience 3 weeks of symptoms - Fatigue, migraines, brain fog, insomnia, malaise, body aches and some days I even have vision problems.
We tried to take me off the Lupron when I was 53, but after going off for a few months it turned out I still wasn’t post menopause based on tests so had to go back on . Given I am now 55 I would think I MUST be post menopause. I am going to speak with oncologist to see if I can try to stop lupron again and just stay on AI.
Questions:
- Does anyone else notice symptoms that follow a monthly pattern
- Has anyone started with Lupron and AI, but then stopped the Lupron and found relief from symptoms?
Appreciate any feedback.
Comments
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Hi @misscici05! Welcome to Breastcancer.org. We’re really glad you reached out, though we’re so sorry you’re dealing with such difficult side effects.
We wanted to gently bring some attention to your post in hopes that others with experience on Lupron and AIs will chime in and share what it was like for them. In the meantime, you might also find our main site page on Lupron helpful as you prepare for your appointment:
We hope more members jump in soon with their experiences. Please keep us posted on what your oncologist says. We're thinking of you.
The Mods
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Hello! I am in a very similar situation. I started Lupron and Anastrozole in 2022 right after I "recovered" from chemotherapy, I was 42. I went off Lupron 1.5 years later, my labs had always shown I was in meno pause until this past Feb. when I got my period. Now I am back on Lupron. I too have terrible side effects after the shot for about 4 or 5 days. I get a terrible headache, my appetite becomes off, I'm tired, I can't think and I'm depressed. I also experience insomnia and body aches. My face, hands and feet get swollen. As the month goes on I start feeling better until I get the shot again. I felt much better just taking the AI.
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thank you so much for sharing. This information has been very helpful ! I swear my oncologist thought I was crazy when I said I noticed a monthly pattern. She thinks it’s menopause and not endocrine therapy causing the symptoms. Under her direction I am stopping everything for 4 months and we will check if I feel better AND if my FSH score shows I am post menopause. Based on that will determine next steps. I stopped about 1 week ago. Still have all the same side effects- hot flashes, fatigue, brain fog, headache, etc. Hoping in a few weeks I feel back to my old self.
I am sorry to hear you are feeling worse because you had to go back on Lupron. It is hard when you look like you are ok but you don’t feel ok. I hope you allow yourself some extra care on those bad days.
I never thought I would be excited for menopause1 -
I wish you all the best and I hope you do not need to be on Lupron anymore!!
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