Forum Discussion

DianeD's avatar
DianeD
Member
17 days ago

Letrozole - aches and pains continue

Last year I was switched from Tamoxifen to Letrozole.  At first I was feeling okay on the Letrozole but then I had a post menopausal heavy bleed (thats a whole other story), so had a medication holiday.  When I resumed the Letrozole I started to ache and have body pains constantly, usually at night which resulted in ongoing fatigue.  I saw my doctor who advised to stop taking the Letrozole - I was 4 years post breast cancer at this stage, so it was felt, as my initial prognosis was good, this would be okay.  My issue is now, 6 weeks after ceasing the Letrozole, I still get the body aches and pains.  It seems to be getting slightly worse.  Does anyone have any experience of ceasing the meds and how long does it take to start feeling pain free?

letrozole

4 Replies

Sort By
  • JosephineB1's avatar
    JosephineB1
    Member
    8 days ago

    I started Letrozole 5 wks ago.   Rheumatism is much worse but tolerable with a lot of walking & major increase in anti-inflammatories.   I've had anxiety/depression for years but Letrazole seems to be making it much worse.    I'm often very anxious in the mornings and this can sometimes go away with exercise or later in the day.   However it seems this anxiety now continues into the evenings  when previously I was able to switch off at night.   I'm talking to my oncologist  but I know his agenda is to keep me on hormone therapy.  Is anyone else feeling this increase in anxiety?   I've got other side effects (thrush in mouth, dry vagina) but it's the anxiety that might be the deal breaker.   Living like this for 5-10 years is a horrible prospect and my GP said  Letrozole has the least side effects so I'm reluctant to try others.  

    I did surgery & radiotherapy but refused chemo and I'm struggling with this decision.  I was quite sure when I said no to chemo but this decision is harder to make.   I'm sure my constant anxiety isn't helping me make this decision!  (Grade 2 tumour that had spread to lymph nodes and Endopredict results said 5-10% chance it will return without chemo and endocrine therapy).

    I'm new to forums so not sure if I've just made a new post or reply here.

    • Tri's avatar
      Tri
      Member
      8 days ago

      HiJosephineB1​ 

      Your post came up in a reply toDianeD​ … I am sorry this sounds like the Aromatase Inhibitor (AI ) Letrozole has been a rough ride for you. My situation is a bit different as I have a slightly different breast cancer type (Triple Positive) and had chemo and immunotherap, but I am also taking Letrozole. The choice whether to continue is one that features in a very good BCNA webcast but if you want to continue I hope your oncologist can discuss the options of trying a different brand with you. With great respect to your GP, I imagine the oncologist will have a broader experience of different AI’s. From other posts by BCNA network members I have heard members say they’ve tried different ones and have found some suit them better than others, and there’s no real hierarchy, it just seems to depend on the individual. 
      I hope you can get in touch with the BCNA helpline who might also help direct you to some resources to manage the anxiety you’re experiencing. It seems more than a few people reflect back on their choices and wonder if they might do things differently so you are among friends on the network. Sending you positive vibes as you navigate this space. 

  • Tri's avatar
    Tri
    Member
    15 days ago

    HelloDianeD​ sorry to hear about your ongoing aches - that’s not the outcome you were hoping for. I have only had a “holiday” from Letrozole so can’t shed light on the time taken if you cease completely but I did notice reduced aches at night when I paused my Letrozole.

    This is a bit left field but if you are taking any vitamin supplements or shakes, it might also be worth checking with your GP and potentially considering a blood test. We had a bit of a discussion earlier this year about news reports of people experiencing muscular aches and neuropathy type symptoms. They were found - through blood tests - to have vitamin B toxicity. 
    Peripheral neuropathy, aches and vitamin supplements- caution about B6 | BCNA Online Network

     

  • arpie's avatar
    arpie
    Member
    17 days ago

    Sorry to hear your aches & pains issues, DianeD​ ... Sadly, Letrozole can cause these issues .... the bleed could be a mix of changing from the Tamoxifen to the Letrozole ... but it happened & it would have been scary xx

    Going from one AI to another - may take a while before they get 'out of your system' and everyone is different ... so some may take longer than others  :(   

    I went from Letrozole to Exemestane and then Anastrozole within a 3 month period at the start of my AI journey ..... and for me, found that Anastrozole suited me better than the other two.   I have been on it for the last 6+ years, and just weaning off them now, as my AI journey comes to an end.
    Take care - I hope these side effects lessen very soon