Im considering telling my oncologist when i see her on Thursday that i dont want to carry on taking letrozol as the joint pains are becoming unbearable. I have been taking it for nearly 8 months now so i dont think things will improve and i can’t keep going like this for another 9+ years . Have any ladies changed meds and what you changed to x
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Hi, i was on Anastrozole, but the brain fog was terrible. Im now on exemestane, the joint pain is bearable.
Hallo. I too have just made the difficult decision to switch from Letrozole after battling with the extreme stiffness and fatigue for 8 months. I also developed carpal tunnel syndrome and insomnia, but these were manageable in comparison to the horrendous joint pain and inability to walk.
The Oncologist started me on Anastrozole less than a week ago and so far, I think I can walk a little more easily but am aware that it’s very early days.
He has warned me that the side effects may be even worse which wasn’t reassuring, but also that some women just tolerate different AIs better.
I hope that your Oncologist is helpful and that you feel comfortable with whatever decision you make 
.
I was on Letrozole for 18mths and also stopped as the joint pain was debilitating. I had a 6 week break before starting Anastrozole but only tolerated that for a couple of months due to migraine and low mood, the joint pain was also creeping back in. I’m now on Exemestane and so far so good. Please tell your oncologist how you feel, there are other options and hopefully something else will work for you too.
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Hi
I did the whole gamut of all 4 of them due to SE’s
Though with the last one (letrozole) I was sort of OK as long as I stuck with ACCORD brand - a change to SUN was disastrous.
So it can be worth changing brands before giving up on the whole thing, and then having a change to another AI. For me Anastrazole was a complete nightmare, but others prefer it
Hi, I am feeling the same and going to ask for exemestane when I can see an oncologist. We currently don’t have one and when the new one comes I will be in the queue behind all the people waiting to start chemo. I might just have to stop taking Letrozole if the wait turns out to be months. It is causing so many problems after 9 months. Most recently I have had terrible trouble with my hands and discovered I have high cholesterol and chaotic blood pressure. I am actually thinking that Letrozole could kill me before the cancer gets a chance!!
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Hello tricia1919.
These meds are tricky. I was on Letrozole to start pre lumpectomy to try to reduce the tumour before surgery last July but didn’t do the trick. I think I wasn’t on it long enough to experience any side effects from it. I was on Letrozole for couple of months or so and then my consultant switched me to Exemestane. 9 months of taking that ultimately became an awful experience. As other ladies here also mentioned, the joint and muscle pain is awful. Walking was a challenge and became breathless after no distance. Walking up stairs or negotiating a step up without any support was impossible. I’m 55 so, like you couldn’t imagine feeling that way for the next 5 or 10 years. Saw my consultant to discuss and he said he sees so many ladies in clinic with the same issues when taking these meds. In fairness he didn’t specify which exactly but was referring to the AI inhibitors. After a 2 month ‘wash out’ and I’m now on Tamoxifen and last week I dusted off my bike and managed 3 x 20k bike ride! What a difference- I could not have entertained that 2 months ago 
Everyone is different with their tolerance and side effects but it’s so reassuring to read in this forum that other ladies are going /have for through the same and therefore not alone with it. Have a chat with your consultant and hopefully you can switch meds.
Let us know how you get on
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I am taking Anastrozole, I am trying to find out if my stiffness and aching body is from it. I have hot flashes out of this world that I didn’t have, I am soo stressed. I will talk to my oncologist about it next month and about I now have severe swelling around my incision and radiation site.
I was on Letrozole for just over 12 months put on Exestame after that and now on Tamoxifen. Just ask your consultant if you can try a different one as I have found that not all tablets agree with me. I had a water infection every 6 weeks on Letrozole and my arthritis was unbearable on Exestame. Good luck
I called the breast care nurses in tears after being on letrozole for 2 years - they were lovely & told me to stop & they made an appt with my oncologist. I stopped it for 6 weeks and most of the symptoms went or improved. I am now on Exemastane and so far so good - its been over a month & I feel much better. Ask and it can be changed. Good luck
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Hi there … Letrozol is a witch … try swapping to extermestane i did …watch for carpel tunnel though , efficacy is the same but i feel so much better and not so much like a creaking gate …
Thanks ladies for all your replies . After seeing my oncologist i was told to stop taking letrozol and i go back to see them in 4 weeks and they will give me a different medication if my pain has improved enough. Hopefully the next one will be better x
Ive just been told to stop letrozole for 3 weeks because of the side effects and then i have to go back on it and after 2 weeks my dr is going to call and if side effects are back they are going to change me on to Anastrozole… Ive said if the effects are as bad with this one im going to stop all tablets as i cant go on like this for the next 10 years
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Had to stop Letrozole because of the terrible side effects, now on Tamoxifen, only taking it every other day, what’s the point taking these meds to suffer the intolerable side effects. Quality of life versus quantity of life, I know what I would rather have
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@tricia1919 I took letrozole for 7 months with increasingly debilitating symptoms similar to yours and worse than when I was going through the menopause. The worse ones are the all over body pain when I wake up (including my elbows) and almost continuous neck pain, and legs that feel like I’ve run a marathon several times over. I discussed stopping letrozole with my oncologist and we used the Predict NHS tool to find out the added benefits for me of taking letrozole given the type of cancer I was diagnosed with. The added benefit is less than 1%. I decided to stop taking it altogether and am not taking anything else. The oncologist supported my decision.
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