Hi Arianne, 

my side effects coming off Letrozole were all improvements, lack of stiffness and muscle pains. A few months later a new consultant wasn't happy that I was taking nothing and put me on Exemestane also known as Aromasin. I'm still on this so I don't have the side effects of Letrozole. It does however make my hair thinner on top. I have an appointment in June and that will be 6 years clear and it has been suggested I could stop then.

good luck. 

Hi everyone,

It is so reassuring to read your posts. I am feeling so alone and not really listened to at all. I started on Anastrozole in 2017, changed to Exemastane as my joints were bad. There was no change so I was moved to Tamoxifen, which for me seemed perfect. However, it was discovered that the Tamoxifen was thickening the lining of my uterus and I had a uterine cancer scare this year. I have been taken off Tamoxifen and am now on Letrozole. 

It's awful, worst one yet. I would struggle to do a normal supermarket shop. I ache constantly down my legs, the base of my back, hips, knees and ankles as well as my shoulders and arms. 

My onc. wants me to stay on these for the next 5 years, but I really dont think I can if I want a quality of life.

Reading your stories makes me feel so much less lonely and isolated so thank you.

J xxx

Hi Chocoholic,

Rest assured that you are by no means alone in this. All of these treatment have potential side-effects, all of which are similar. It is important to find one that you can cope with. It is a great pity that you were coping well with Tamoxifen, yet had to be taken off it. Have you tried taking your Letrozole in the eveing instead of the morning? Some people find that this helps. Others find that some brands of Letrozole work better than others, so have a word with your care team again and see what they suggest.

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

Kind regards,

Jolamine xx

Hi Everyone

I have been taking Letrozole since January 2022 and the side effects are not too bad, I take it at 8pm every evening and feel that it works a lot better in the evening. I tend to get pain across the back of the hips when getting up after sitting down for sometime, but it goes quite quickly once I move around. Keeping activity, I think is the best option,

Best Wishes

HelenaK