Side effects when you stop taking Tamoxifen

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DeeDee-TC
DeeDee-TC Member Posts: 1

First and foremost, I am thankful to be alive and grateful to be able to say I have been officially cleared to stop taking Tamoxifen. However, I am having side effects and am not sure what to do about it. My side effects consist of severe headaches, hot flashes, dizziness and an overwhelming sadness. The crying is the worst, I break out in tears several times a day. Even sobbing on occaision. This even happens at work. Is there anything to help? I've never had issues with depression. I am on week two without tamoxifen. I have also contacted my oncologist for her suggestions.

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  • miss_g7
    miss_g7 Member Posts: 5
    edited February 2015

    I too have had issues similar to yours while on tamoxifen. I'm going into my 6th month, and I have been very inconsistent the last month. My nightly alarm goes off, then I turn it off and continue doing something else then I forget. Crying, brain fog, body aches...I don't know if it's the inconsistent tamoxifen or some other emotional distress. I'm going to tough it out for the next few weeks and be consistent as hell with my nightly pill. Then I think I will know if that's the issue. Hope you find out what's going on. Keep us posted!! Take care.


  • rodeogirl
    rodeogirl Member Posts: 52
    edited February 2015

    Hi I used it for 3 weeks, it was unbearable. I felt seedy and my eyes ached as well giving me severe anxiety attacks. I reduced it to half dose for a week and then quit. My eyesight now is so bad i need glasses. Blurry vision and degraded eyesight. I stopped it before it could do more damage, im seeing the oncologist again today. How come noone has asked to see my hormone levels, I was just reading that women with low progesterone has increased incidance of breast cancer by 80% than those using the progesterone cream, anyone know anything about this ?


  • proudtospin
    proudtospin Member Posts: 5,972
    edited February 2015

    understand this is a serious med and ending it is not easy

    I ended 5 years on my AL, doc said just stop but in retrospect I think I should have tapered off, the first week you did not want to talk to me!  give it some time and try to be cool

    hey, I had to take precnisone and that was the pits ending!

  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2015

    I am on Tamoxifen for another year. The SEs for me haven't been too bad. Night sweats, weight gain, mood swings all manageable. I didn't know SEs after the fact would be a problem too. I'm going to ask my oncologist about it when I see her at the end of the month.

    Diane

  • formydaughter
    formydaughter Member Posts: 213
    edited February 2015

    I'm on tamoxifen and get a severe headache from it, often around the time I am due for my next pill.

    Maybe tamoxifen withdrawal causes headaches?

    At that time of day, I also experience mood swings and some depression, but it is also the time of day that I'm due for my Citalipram. Which has helped for cancer caused anxiety and depression. So many drugs - hard to know the cause.

    I get hot flashes fr tamoxifen, but my newly started Lupron made them much worse. Not sure about going off Tamox causing them, but I agree with proudto spin that tapering might helphere? They are strong drugs.

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