Tamoxifen to Letrozole and Side Effects

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I have been on Tamoxifen for just under 3 years but suffered mainly with tendonopathy in my hamstrings/both Achilles tendons and a tendon in my glute also bursitis in one hip. I became a mess. I am convinced it’s the tablets. I got changed to letrozole and was shocked to be put on it when the tablet leaflet said ‘can cause tendon rupture’! My tendons were already bad. The only plus point with letrozole was my brain fog cleared. Well I’ve been on letrozole for about 6 months and today I got my first ever UTI. It was very painful. These tablets just keep on giving. Not sure how much more I can take. I really never thought they could affect your life as much as they do. 
for those of you that don’t suffer from the tablets I do envy you as I really don’t want to stop them and the cancer return. 
Thanks for reading

  • Hi Gwills

    I hear you! I have been on Anastazole since January this year, following lumpectomy for IDCIS in October followed by re excision in November as Lobular Cancer was discovered on the outer perimeter of the healthy margin. I found the side effects pretty awful too and the thought of 5 years of taking it really depressing. Mainly, headaches, plus back and rib pain. After 5 months I phone and spoke to one of the breast care nurses to discuss changing to a different brand. I was advised to stick with it, as they all have side effects. On the advice of another sufferer, I take glucosamine/chondrotin supplements and fish oil. 6 months on and my body seems to be getting used to meds a bit better. So, might be worth a try. I still have bursitis in my hip, but this has been an ongoing problem for years, so I can’t blame the medication for that.
    Have you had a DEXA scan to check bone density? These tables can cause bone thinning . Mine revealed osteopenia, so will have another scan in 2 years to check that it isn’t any worse. 
    Good luck for the future.

  • Hi. Thank you for the reply. Yes I take glucosamine.  unfortunately for me it’s a tendon issue and it’s the lack of collagen and now the inability to repair due to very low oestrogen. I’ve tried bone broth and collagen supplements (although not really approved of) I’m not winning this battle. The sports medicine guy I’m under has spoken to my oncologist and now I’ve had an appointment through to see her. It’s the UTI that has got to me it just seems one thing after another. 
    yes a dexa scan is required at the beginning of taking letrozole and everyone should be offered one. I take vit D and Adcal because of bone thinning. 
    im glad to hear the supplements are helping you. Keep perceiving 

    have a lovely day 

  • Hi Gwills

    I have been on Letrozole for 7 months now. It was tough at the beginning but then I was very ill and had just had radiotherapy. I have been told I will stay on it for life and know it is keeping me alive so worth all the side effects and definitely better than the cancer symptoms! Bear with it as I hear from other patients at the chemo unit and know it is one of the best meds out there for certain kinds of breast cancer

  • Hi   Yes I developed archilles tendonitis on Anastrozole for the first time and also now have some issues with general ligaments/ tendons especially my feet and one elbow. It's frustrating as you are right that it's linked to depleted collegen and estrogen and supplements don't really help. I find keeping active and supple helps ( I do a weekly dance and do yoga/ pilates)  plus I have some exercises from the physio for my ankles which do help when it's particularly bad. I switched to Arimidex after the first year rather than generic Anatrazole and do find this better as I clearly reacting badly to the fillers in the generic tablets ( I'm super sensitive to meds in general) I'm coming up to 3 years now so only have another 2 years to go so hope to manage to hang on but I empathise with your situation xx

  • Hi, I've been on letrozole for almost 3 years and have occasionally UTIs, which I find are the most debilitating side effects.  The last one was so bad I did take antibiotics, which then gave me constipation!  Truly the gift that keeps giving.   Best wishes 

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  • Thank you for replying it helps Blush

  • Hi. Yes I’ve been on antibiotics for it. Thanks for the reply it helps Blush

  • Thank you for your reply. It helps a great deal Blush

  • Re UTI - I'm on anastrozole and taking Vagifem for vaginal dryness. This is also supposed to reduce the number of UTIs (can't remember why) but it delivers topical oestrogen to that area, and just makes everything so much more comfortable. Vaginal dryness was nearly my final straw with the tablet, but fortunately the Vagifem helped, and I'm still on them.  It was prescribed by the GP's practice nurse, although when I spoke to the Breast Care nurses, they said that's what they would have prescribed as well.

  • Many thanks for your reply. I am having physio and shock wave treatment and being looked after by sports medicine consultant. However we don’t know if the damage that’s happening will be permanent. Or I’m not being told! I have an oncology appointment very soon to talk about the issues. I will drink more water and I’ve been recommended cranberry tablets and probiotics. I will look into the anti inflammatory foods you talk of. I’m on another lot of antibiotics for the UTI . I’m just fed up it’s one thing after another stopping me doing what I love. Like playing tennis 

    thanks again