Letrozole

Hi everyone, I'm new to this forum but have been reading a few posts. I started taking Letrozole in July 2019 with no ill-effects but at the beginning of January this year started experiencing pain in both my arms near my shoulders. Spoke to the nurses and they said contact again if it gets worse .Is this normal or will the pain disappear? I know that some of you have changed medication but could do with a bit of information about whether you think that it is the Letrozole that has caused the pain after 7 months. Thanks.

  • Hi, I don't know whether this helps but I have been taking letrazole since May/June last year and have found that the make of the tablets can be different. I thought I had got a make that suits me but I am suffering with a lot of joint pain atm, I phoned my breast nurse on Monday and she did say that some women get side effects straight away and some get them a few months down the line. I am currently on a 'hormone holiday' they call it and seeing my oncologist next month to have a chat about maybe trying another tablet altogether xx

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    Hi Chrijoh,

    Welcome to our forum.

    I am sorry to hear about your side-effects from Letrozole.  It is inclined to cause joint pain. I had to have both of my knees replaced when I was taking it. I took Tamoxifen for the first year and changed to Letrozole when I developed another primary cancer in the same breast the following year I took this for 6 years and, stopped taking it in JUly 2017.

    I hate to say it, but my pain is still present. Speak to your nurses again and see if they can change you to something else. They may well advise you to stick to the original Letrozole drug and not any of the proprietary names. Other advice is given to take the tablets at night instead of the morning. Unfortunately, neither of these made much difference to me.

    I hope that you manage to find something with fewer side-effects.

    Kind regards,
    Jolamine xx

  • Hi thanks for replying. I am going on a Moving Forward course at the beginning of March so will mention it again then, in the meantime I am doing a few excercises to see if that will help. Have you just started your 'hormone holiday' after speaking to the nurse? I am not supposed to be seeing my Oncologist until December!!! Let me know if the pain disappears now that you have stopped the tablet.

  • Hi, yes I have started my hormone holiday apparently they don't like you to have more than 4/5 weeks without some kind of hormone therapy , I do feel better, I have fibromyalgia so think the tabs made it worse but I am def feeling better still got a few aches and pains but nothing like when I was on the letrazole xx

  • Hi Jolamine,sorry to hear that you had to have both knees replaced, that is not good. I will be speaking to my nurses again in about 3 weeks as I am booked on a Moving Forward course. I have also started taking Alendronic acid tablets and one of the side effects of them is also bone pain so am wary of it all getting worse but hopefully I will get it sorted soon x

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    Hi Chrijoh,

    Having both knees replaced has helped, so I can't complain. It's a long time to wait until December to see your oncologist. Are your breast care nurses going to be present at your Moving Forward course? Mine was run by a representative from Breast  Cancer Care, who I had never seen before. If you don't see your nurses there, please phone them and discuss how you are feeling with them. This is why you have been allocated a specialist nurse.

    I have had to contact mine a few times throughout the years and, they are a great conduit to your surgeon and oncologist if you need help or advice from them before your next appointment. There are 2 breast care nurses in my breast clinic. Both are very helpful, despite how busy they are. Because they are so overworked, it is impossible for them to man the phone at all times. Occasionally, I have had to leave a message for them, but they always phone back.

    Letrozole definitely affects the joints. There are different side-effects to different hormone medication, but some of these might suit you better. I hope that you enjoy your course and that something can be done to ease your pain.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hey there, I started letrazole just over 3 weeks ago, the pain in my shoulders was almost instant. All my joints and muscles ache, some days are better than others. I'm considering cbd oil for the joint pain, I also get the hot flushes. Everybody is different I guess x

  • Hi, if you are really struggling ask about maybe trying something else xx

  • I'm dealing with it, hoping it will settle, its just another option to look at x