I started Letrozole in August 23 after a left mastectomy due to invasive lobular breast cancer, stage 2, grade 2, also in 1/12 lymph nodes.
Despite taking daily cod liver oil plus Glucosamine with Chondroitin, exercising, and trying everything possible, the stiffness, carpal tunnel syndrome, and fatigue have finally made me decide to give up as my quality of life has been impacted so badly. I can hardly walk, hobble around like a 90 year old, and am often in a lot of joint pain.
On the advice of the Breast Care Nurses, I stopped taking Letrozole just over 3 weeks ago and have an Oncologist appointment next week to try a different AI. I had been advised that I would start to feel better within 7-10 days but I’m still as sore as ever. How long did it take anyone else for the severe Letrozole side effects to stop? And was a different AI any better?
Thank you.
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Hi
So sorry you were having such severe side effects with Letrozole. I have only taken it for four months and have joint aches, hot flushes (could be Herceptin aswell) and carpal tunnel in left hand only. I found walking and some exercise help with some joint pain. I’m definitely not as flexible as I was a year ago. I started with light weights and now I have chest wall pain.
I know of another lady who stopped Letrozole 2 months ago and still doesn’t feel any different. She was advised it can stay in your body for several months. She didn’t swap to another AI.
You may want to call the BCN nurses to talk through your own situation
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
- Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
I hope you feel better soon 
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Thank you so much for your reply. Every day I hope that the side effects will reduce so it’s helpful to know that for some people, it can take longer than the 7-10 days stated.
I wish you well on your journey 
.
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Hi
I stopped after 5 years on Ai last September. (Letrozole as the last one for 3 years)
Sorry to say that by Christmas, I no longer had insomnia or constipation and I could now climb the stairs with ease. I also realised that my hair was no longer falling out. My nails are getting stronger. I no longer have to run my hands under the cold tap in the morning to get them to unlock. Hot flushes gone.
Whether I still have the osteopenia, I doubt I will find out as I don’t suppose I will have a DEXA scan again
The only thing not to get better is the VA - that’s still with me and I suspect it always will be!
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Thank you so much for your reply. It’s reassuring to know that it took a while for some of your Letrozole side effects to go away, and I’m sorry to hear about the continuing ones.
I wish you well on this horrid journey xx
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I’d say nearer 6 weeks - take it easy but try to get out and about - several (very) short walks rather than one long one.
I moved to Anastrozole - tried various brands and have found 2 that do not cause: itching, joint pain, muscle pain and only minimal edema.
Different brands really do have different effects
Wishing you all the best and a pain free, side effect free future
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Thank you so much. I saw the Oncologist today and will take my first Anastrozole tomorrow. Which 2 brands have you found to cause the least side effects?
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Hi Fran
Different women find different brands work best so its a bit of trial and error - I have found Aromax and Teva OK. Lasted a week on Accord but others find it is fine. Once you find what works insist on that brand - not always easy with the chronic shortages but persistence does succeed.
Good Luck
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Thank you so much. I have been given Crescent brand and will keep a track of how I am on that. I am so very hopeful that the side effects may not be as debilitating as on Letrozole……. Watch this space I guess. I wish you well