Coming off Tamoxifen

Hi all,

I’ve been on zoladex and tamoxifen for nine years. I’ve recently stopped the zoladex as I was suffering from increasing levels of anxiety. And I’m about to have a six week break from tamoxifen too to see if that makes any difference.

I’ve read on here that people can experience withdrawal effects from stopping tamoxifen.

I’m interested in two things. Firstly, has anyone on here stopped taking tamoxifen with no problems and feel fine now? It would be nice to hear some positive stories!

And my second question is, if you did experience withdrawal symptoms after stopping tamoxifen, did they eventually improve? Again, fingers crossed for some good news stories! :crossed_fingers:

Hi Hoshi,

Sorry to resurrect your thread after a long time but I think you ask a really important question. It’s a shame no-one was able to share their experience.

Can I ask how you got on with coming off the tamoxifen? It’s something I’ve wondered about. Surely there must be a transition period coming off it, just as there is going on it?

Thank you

Hi

Saw this post and was about to post something along these lines too.  My mum (who had breast cancer) came off tamoxifen around 2017 and didn’t seem to have too bad side effects.  However, what we have noticed is that since she came off them at intermittent intervals she has experienced “night terrors” waking up screaming (normally around 2-3 hours after being asleep), we’ve kept a note when they have happened, they are not frequent (i.e every week etc), and the only “thing” that has changed in her life to maybe trigger this is that she came off tamoxifen.

I know there is a lot of helpful information on the side effects etc whilst taking it, but wondered if anyone had experienced anything relating to sleep etc since coming off tamoxifen.

Thanks 

:slightly_smiling_face:

Hi came off Tamoxifen 7 weeks ago after 10 yrs now feel very exhausted and joints ache so hopefully will improve soon