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Hopes_and_Dream's avatar
Hopes_and_Dream
Member
3 months ago

Have you had withdrawal side effects after stopping Arimidex!

Hi everyone
It’s been a while since I’ve been here!
I saw my oncologist on Tuesday re stopping Arimidex.  I was thinking of stopping anyway but Arimidex being discontinued gave me a little push.

When I had my mastectomy in August 2016 I was told I’d be taking Arimidex for 5-10 years although my oncologist told me on Tuesday that new studies show that 5 yrs is sufficient and the harm to the body (bones, heart, skin etc) outweighs the benefits of staying on it for more than 5 years.

Anyway, it’s been 8.5 years for me and I’ve taken my last pill.  The specialists are happy with my cancer markers, scans etc.

I’ve been lucky that I’ve had minimal issues whilst taking Arimidex.  Of course, bones aren’t great, there’s a few extra kilos but not the problems I’ve heard others have experienced.

But, a couple of days after stopping I’ve felt light headed and a bit nauseous.  
I’m wondering if it is a withdrawal from the drug?

Has anyone else been on Arimidex for a while and suddenly stopped?
Did you feel normal or did you notice any unexpected withdrawal side effects?

I was told after stopping Arimidex that I should notice an improvement in my energy levels and general well-being in about 2-3 months.  Let’s hope so!

Jane x



  • jennyss's avatar
    jennyss
    Member
    3 months ago
    Dear @Hopes_and_Dreams,
    I'm still on anastrozole, not arimidex, so can't comment on side-effects after stopping. But eight years since your mastectomy - That's good!

    from jennyss in Western NSW
  • arpie's avatar
    arpie
    Member
    3 months ago
    Great that you can come off the Arimidex @Hopes_and_Dreams  .... have a chat to your Onc about coming off it 'slowly' rather than a sudden stop - even if it means going back on it again, but reduced dose (getting less every week) for a while?  Hopefully that will help alleviate the side effects.  There are lots of meds that they 'wean off' gradually (steroids, opioids & others) ... and I reckon that AIs should be one of them ... (AND should wean on too!!)

    I am currently coming off 6 years of Anastrozole & am doing it slowly - and so far, so good - no side effects!  None of the aches & pains either, that I'd had whilst on it full-time!  :smile:   I'll be off it for good, soon!  
  • Hopes_and_Dream's avatar
    Hopes_and_Dream
    Member
    3 months ago
    It's great news that you are also coming off Anastrozole @Arpie.  

    I think I've missed the boat as it's been 5 days since I stopped and the withdrawal side effects are slowly lessening.  I asked him at the time about coming off cold turkey and he said it would be fine.  I think I'll give feedback to his practice manager which may help the next person in my position.

    It makes complete sense that there would be side effects.  We all had some initial adjustments when we first started taking it - I remember being a bit nauseas and tired, and it's a strong drug to abruptly stop.

    Good luck with your weaning off!  I hope you feel better for it x
  • Hopes_and_Dream's avatar
    Hopes_and_Dream
    Member
    3 months ago
    Thank you for your reply @Jennyss.  You joined here not long after me - I hope you are doing well x


  • Glemmis's avatar
    Glemmis
    Member
    3 months ago
    Hi @Hopes_and_Dreams, we were diagnosed around the same time. Glad to hear you are doing well. When I saw my Oncologist last year she said I will probably come off Letrozole this March as it will be 8 years & it is long enough. It will be interesting to see if I feel any different, hopefully better, not worse!
  • Hopes_and_Dream's avatar
    Hopes_and_Dream
    Member
    3 months ago
    Hi @Glemmis, I know - 8 years!   can't believe how quickly time has passed since July 2016!
    I'm happy to say that all my withdrawal symptoms are now gone.  I don't feel any different yet but I'll check back in with myself at Easter, by which time I'll have been off Arimidex for just over 3 months.
    All the best coming off Letrozole in March.  I wonder if it's worth weaning off slowly?
    I hope you continue to do well x