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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Profile picture for windyshores @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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Profile picture for cherziggy @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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Profile picture for windyshores @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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Profile picture for cherziggy @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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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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Profile picture for sessioja @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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My diagnosis and treatment was similar to yours in April 2023. A year ago I started with Anastrozole. I lasted a week on it. Didn’t feel well and developed a rash. I was switched to Letrozole which I’ve been on for a year now, problem free. I’ve found taking it at night helps with the sleep issues I initially had. Few if any aches and pains, but I take a joint supplement and such to combat that. We moved recently, causing the small joints in my hands to flare up as well as my ankles due to all the packing and going up and down the stairs. It’s been a week and I’m slowly recovering. I was doubtful Letrozole would be any different from Anastrozole, but was pleasantly surprised to find I’m in the 50% who can tolerate it. I certainly understand your misgivings. In my case, I’m glad I gave it a shot!

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Profile picture for sessioja @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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Yes. Good you found a different mfg. It DOES make a difference. Get to know your pharmacist WELL
Mine was willing to look things up for me and allowed me to pick her brain. She looked into the half life theory I had, said shed research it for me and call me back. She did.

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Profile picture for shebell @shebell

Thank you Laurie! I will check additional sites. I have talked with my oncologist and we are exploring other drug options. They all have such daunting side effects. I am turning 60 this year and a very active runner and weight lifter with no prior health issues so the medication struggles are a new journey for me and certainly not one for the faint of heart🥴

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Yes, the side effects are terrible for many. These drugs are crippling. I switched to exemestane. It worked for awhile. However, i was in the 1% that affects the heart. I had a heart issue about 4 years ago. ER Q Cardio suspected i either had a blood clot or an arterial spasm. Asked about my exemestane.
Look into natural AIs. I was told by a certified nutritionalist that flaxseed HULLS were best.. not flaxseed meal, etc. Mushroom's are another.
I wish more oncologists would work WITH these specialists.
IMHO: the half life OF most AIs are 50 hours.Discuss with your dr if you can start a build up of every other day or 2 days on, 1 day off.
Research exemestane for bodybuilders. Their drs say no more than 3 months due to cardio issues. That might be for just men, but I doubt it.
I was on Letrozole. Couldnt tolerate it. Then to exemestane. Much better, but I think i was on it too long.
BUT MFGs do make a difference. I would look for an Israeli mfg. Seriously. I used TEVA but that was 10 years ago.
And if you need an extra dose of depression, search to purchase your drug in powder form. You will be stunned.

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