Stopping lupron

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Jlove1821
Jlove1821 Member Posts: 58
edited September 2019 in Hormonal Therapy - Before, During, and After

So after 2 years on lupron I can’t take the side effects of bone pain , hot flashes, low libido, fatigue so decided with my doctor to stop the lupron. ( I am36 with Oncotype of 24 so had mastectomy and chemo and on tamoxifen). I am so looking better to feeling better overall but just trying to find another person who went through something similar! Thank you

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited September 2019

    Hi Jlove,

    I did stop Lupron for 3 months before switching to Zoladex. My period didn’t return until my first Zoladex injection. In my experience, Zoladex feels like Lupron Lite. Just wondering if you’ve considered or tried that option already?

    By all means, if you want to stop, that’s your call, I did. Then my second opinion MO suggested trying the Zoladex to see if things improved, and they did. I have 3-5 days a month where I feel crummy, but that’s about it. Some months I don’t even get any crummy days, or maybe just one! I figure that’s about the same trade off as a period.

    Buuuttt...the shots are worse, they’re in you’re stomach with a big fricken’ needle. That part sucks. I ice beforehand and it helps.

    Anyway, good luck!

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  • Falconer
    Falconer Member Posts: 1,192
    edited September 2019

    Jlove; I feel your pain. Lupron was a nightmare and I only did it for one year. Are you also taking Tam? I went on an AI while taking Lupron shots. My MO switched me to Tamoxifen and yes I felt much better. Gone was the joint pain, low libido and ringing in the ears. Leg cramps abound, as do muscle cramps in general, but I’m better than I was. My body was very unhappy with such low estrogen levels. So, my risk of recurrence May have risen slightly but my QOL is way better!

    Hope you find the same

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  • Musicgal
    Musicgal Member Posts: 21
    edited September 2019

    Hi Jlove

    I finished 10 years of Tamoxifen in 2016.

    Effexor/Venlafaxine really helps all the symptoms.

    That said, I would not do the ten years again. (See topic on cystic acne in this section.)My energy level continued to decrease. My teeth are falling apart. I wonder if I might have skipped Tam completely...who knows. No onco test when I went through.

    The lethargy has led me to a beautiful, still life, in beautiful places. I am very content every day. ( Because the nightmare of Cystic acne is going to be over soon, and I even get nice skin out of the deal. 3 more months on a much more powerful drug than Tam, and side effects are far worse.

    Did hormonal therapy ( any brand) cause severe cystic acne? I am very sure it did.


    Good luck. The suffering is what makes us find happiness. Try Headspace app!!




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  • Jlove1821
    Jlove1821 Member Posts: 58
    edited September 2019

    falconer: thank you for reply! How long did it take you for the lupron symptoms to start going away? I’m hoping just tamoxifen will be much better for me too. I’ve been on tamoxifen too. I’ve actually only been on lupron for a little over a year.. post menapausal bc of chemo for about 2 year

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  • Falconer
    Falconer Member Posts: 1,192
    edited September 2019

    J, I really am not sure but it wasn’t very long until I started to feel better. The Lupron stopped my period in its tracks. Six months to the day of going off Lupron it returned. Could've done without it, but there is something comforting in that regular cycle. And estrogen, boy did I miss it. I literally had no sensation whatsoever during sex. Well that all came back too. Hope you find it works for you.

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