Aromatase Inhibitors: How to choose and manage side effects?

Posted by shebell @shebell, Sep 11, 2024

I was diagnosed in April 2024 stage 1 invasive ductal carcinoma - estrogen positive. I had lumpectomy and radiation my onco score was 12 so was able to skip chemo therapy. I have tried Anastrozole and had terrible side effects I have not tried Tamoxifen yet and am seriously thinking about forgoing any AI long term treatment has anyone else made that choice?

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@cherziggy

I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good or bad experiences. Thank you!

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My oncology nurse (after much cajoling on her part) got me to try osteo bi flex for the horrible joint pain I was experiencing. Much to my surprise, after about two months, the pain was so much better. You may want to give it a try 🌹

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@cherziggy

I’m glad the letrozole is working for you! I am able to walk and do so every morning at twilight. I look forward to it even though it’s difficult sometimes.
Can I ask if you take the meds at night or in the morning? I heard someone else say that when she changed to taking it before bed was a game changer for her.
Have a good day!

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@cherziggy I finished my letrozole. I took it in the morning...

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@cherziggy

I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good or bad experiences. Thank you!

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I tried anastrozole- did not work. I am on exestamine- joint aches and sleep issue, went off for a bit but back on with less side effects… I also added seeing an acupuncturist ( she’s also a oncologist) which has helped the side effects - she also recommended some supplements. I also walk, healthy yoga and a breathing yoga which has really work! I am not joint ache free, but everything has helped. I’m 61 . I’m okay with my “new” normal.

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@windyshores

Brand name letrozole worked for me. Certainly not without side effects. I found that walking more than 20 minutes helped. Up to 20 minutes I had a lot of pain but if I got up to or past 45 minutes I felt good. My onco said she had heard that from others. Not to minimize your pain which may make walking impossible.

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I’m glad the letrozole is working for you! I am able to walk and do so every morning at twilight. I look forward to it even though it’s difficult sometimes.
Can I ask if you take the meds at night or in the morning? I heard someone else say that when she changed to taking it before bed was a game changer for her.
Have a good day!

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@cherziggy

I’ve tried Letrozole and anastrozole brand name. The Letrozole destroyed the ulner nerves in both arms after 3 weeks of taking it. The anastrozole made my joints hurt and the brain fog was unbearable. I’m really skeptical now about trying the 3rd one!
Did you find one to work for you?

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Brand name letrozole worked for me. Certainly not without side effects. I found that walking more than 20 minutes helped. Up to 20 minutes I had a lot of pain but if I got up to or past 45 minutes I felt good. My onco said she had heard that from others. Not to minimize your pain which may make walking impossible.

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@windyshores

Switching manufacturers and then to brand name helped me. I know everyone is different! Which ones have you tried and what are you about to try?

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I’ve tried Letrozole and anastrozole brand name. The Letrozole destroyed the ulner nerves in both arms after 3 weeks of taking it. The anastrozole made my joints hurt and the brain fog was unbearable. I’m really skeptical now about trying the 3rd one!
Did you find one to work for you?

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@cherziggy

I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good or bad experiences. Thank you!

Jump to this post

Switching manufacturers and then to brand name helped me. I know everyone is different! Which ones have you tried and what are you about to try?

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I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good or bad experiences. Thank you!

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Hot flashes and joint pain— in my case r knee and hands— were some of my worst symptoms. I’m taking Anastrozole from my local CVS distributed by Aurobindo Pharma USA ofEast Windsor, NJ.
I have a rare hot flash on occasion ( less than once a month) but that’s it.
I think it’s the new formulation; my doc says it can also be my body adjusted after the 6 months of living with the side effects and misery. whatever I’m just grateful.

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@sessioja

I want to second the comment on trying different manufacturers. I was on a generic anastrozole and on the verge of giving it up because of the terrible side-effects; I refilled the prescription one more time and things got better. Over the month all my bad side-effects went away; my drug store had changed the supplier/manufacturer of the anastrozole they use. I was just lucky. I would not have known that the filler/so called non -active components could make the difference between my ability to take this AI drug I needed.

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Which one did you try? I have the brand name not a generic, but the hot flashes I hate and other little side effects like hip pain.

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