Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?

Posted by christinej @christinej, Jul 24, 2018

Monday, July 23rd, after consulting with Dr. Loprinzi, we decided to have me stop taking anastrozole. (Arimidex). It has been 5 years since I started the drug after breast cancer surgery and radiation. Has anyone stopped this drug and had any withdrawal symptoms? The nurse from Blue Group sent me an email today saying that there are no withdrawal symptoms after stopping this drug. Soooooooooooooo, is this all in my head? Definitely having some type of withdrawal.

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Profile picture for dmosssadler @dmosssadler

I had 3 positive nodes, but I was thrown back when the doctor said the world "qualify"...that didn't sit well with me. So I didn't want to take the Versenio..It just didn't sit well with me...I'm still on the fence...
I do want to thank you for sharing your experience with me.

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Good for you. “Qualify”.
Verzenio is about $2500 a month.
Years ago I had 13 nodes out of 23.
Did the chemo, dble mastectomy and radiation, while taking exemestane AFTER I dropped letrozole.
I was in clinical remission for 10 years.
Im Glad Verzenio wasnt on the market then as I probably would've refused it.

However,
10 years later, Im back with breast cancer.
I firmly believe, EXTREME STRESS awakened a breast cancer cell in me while having a very painful bout of gastritis ( EXTREME STRESS the catalyst) as it showed up in an endiscooy in my stomach lining.
I left my previous oncologist due to personal differences.
I am now reluctantly on verzenio and faslodex.
However, On the plus side, my new oncologist has incredible credentials, a Masters in Physiology, Phd in Pharmacology, Doctorate in Osteopathic Medicine, completed his residency in internal medicine, and completed a combined oncology/hematology fellowship at the University of Texas M. D. Anderson Cancer Center and is a remarkable person. I trust his judgement in spite of my concern.
I was led to him by a dear friend.
I have confidence in his decisions and even tho I can easily talk with him as I could my other onc, I feel he has a better edge on treatment and Hearing me.
FYI: Ive learned a lot about both oncs by reading my charts AFTER I have had a visit with them.
I STRONGLY mention this because few patents actually take the time to READ their charts.
By reading your chart, the drs notes, You will learn:
more about you,
more about your dr,
and
will get a glimpse of how THEY perceive YOU.
You may not like what you read, but it may give you reason for reconsidering your choice.
I will end here. I hope this helps.
Cheering you all on for better health.
❤️❤️❤️🌺🌺🌺

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Profile picture for vikkr @vikkr

I too stopped taking Arimidex after five years now have enlarged fatty liver, osteopenia, debilitating fatigue, progressing weakness muscle weakness weight loss poor appetite hearing loss neck and back arthalgias, abnormal high white blood count high monocytes high MCHC and high hgb, UTI's, bladder incontinence, bone spurs, herniations etc. anyone else have "withdrawal symptoms"?

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I quit taking 6 months ago Anastrozole after taking it for 5 years. Now I believe I am getting an autoimmune disorder. My PCP will not listen to my symptoms. I have Auricular hardening, nodules on my finger joints and on other areas of my body, sensitivity to sunlight, Tachycardia if I am outside when it is over 80 degrees, lesions in nostrils on and off, white fingernails, my arches in my feet collapse and are painful if I am on them too long each day and I was just diagnosed with Diabetes. I have severely dry eyes per my Ophthalmologist. I have a severely dry vagina per my OB GYN doctor. My scalp is very dry and flakey, and my hair is falling out. I just developed Atherosclerosis of the Coronary artery. I also have osteopenia and have stress incontinence and have to urinate every hour. I have some fatigue. You're not alone.

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Profile picture for Chris, Volunteer Mentor @auntieoakley

Just completed 10 years, and quit 12 days ago, a little fatigue but my doc said to please call him in one month and report as long as there is no major issues. The bone pain I have endured for 10 years is moderate most days, but not enough to make me quit. I am hoping this will all subside soon.

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I just went off Letrazole after being on it for almost ten years. I'm having hot flashes and am cranky and now sad. It seems like menopause all over again! I wonder if anyone else has experienced this.

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Profile picture for deedyp @deedyp

I just went off Letrazole after being on it for almost ten years. I'm having hot flashes and am cranky and now sad. It seems like menopause all over again! I wonder if anyone else has experienced this.

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I am hoping you will get through this transition period soon. I did age more quickly than my peers because of years of endocrine therapy. I also feel like the year i finished, that accelerated a bit. Like you, the “sad” was a real problem. I attributed that to circumstances but looking back, it did get better after a period.
Please talk to your doctor about this, our primary care folks just don’t get it and after a while my oncologist just didn’t either. Sadly unless they have been through it, I don’t believe they can. It isn’t because they don’t care, they just don’t see it.
Are you seeing your oncologist again anytime soon? How are you dealing with the sadness?

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Profile picture for Chris, Volunteer Mentor @auntieoakley

I am hoping you will get through this transition period soon. I did age more quickly than my peers because of years of endocrine therapy. I also feel like the year i finished, that accelerated a bit. Like you, the “sad” was a real problem. I attributed that to circumstances but looking back, it did get better after a period.
Please talk to your doctor about this, our primary care folks just don’t get it and after a while my oncologist just didn’t either. Sadly unless they have been through it, I don’t believe they can. It isn’t because they don’t care, they just don’t see it.
Are you seeing your oncologist again anytime soon? How are you dealing with the sadness?

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I see my oncologist this week. I'm sure she will not really "get it" but today is better and I'm hoping each day improves as I adjust.

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Profile picture for ebtexas55 @ebtexas55

My yoga, thank you. I looked it up and youre correct!
I was on Letrozole prior to Exemestane and that has 48 hours. It was Letrozole that was crippling so I switched to Exemestane. Sadly, I was in the low percent on Exemestane that caused the heart problem.
Again, thank you for your correction!

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@ebtexas55

What heart symptoms developed on Exemestane?

Did you have prior heart issues?

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Profile picture for timely @timely

@ebtexas55

What heart symptoms developed on Exemestane?

Did you have prior heart issues?

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I wrote that in 2024. I had no heart issues before exemestane. Long story short.. in 2021 or 2022 i went to the ER. I was told i had either had passed a blood clot or had an arterial spasm. Cardiologist didnt know. He asked me if exemestane was a prothrombotic. I didnt know.
I took myself off exemestane because i didnt know what caused the heart episode neither did the docs.

Since April2025, im now back on exemestane.
However, since my heart episode in 2021/22, i immediately got off coffee and caffine.
Ive not had any heart incidents to attribute to exemestane but now, I do have afib randomly, but that started PRIOR to me going back on exemestane.

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I finished 5 years on Aug 24. No withdrawal but it is taking time to feel like I am not on it anymore. A lot of fatigue but I had terrible sleep for 5 years. So I think this is going to take time.

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Profile picture for cancersucks @cancersucks

It’s related to the drug and it may take time to get energy back but it will come back . I push myself to do what ever I have to get done . I have been off it 2 months

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I appreciate your comments. I have felt fatigue on anastrazole and still 4 weeks after stopping (finished 5 years). Each year fatigue got a little worse and I too just do what I need to do. I am still able to strength training 3x a week and push myself but rest when I feel.like doing nothing much. I have been assured that the fatigue will get much better but to set realistic expectations because it can take months for your body to readjust. Patience is hard but I trust my oncologist!

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Profile picture for marthannw @marthannw

Greetings everyone, I’m really happy to find this discussion about withdrawal from an AI. I took anastrozole for 7 years and stopped in mid-November 2020. I just couldn’t deal with the side effects any longer. Since I stopped I’ve had some symptoms that I did not have while taking it!
Frequent headaches, intense hot flashes preceded by feeling so weak I have to lie down and much worse pain in my hips. On the bright side, I no longer have daily muscle spasms in my back, the brain fog is lifting and lately I’m sleeping at night for longer stretches of time - sometimes five hours!
I’ve searched online for information on withdrawal and I can’t find any formal studies, only a few message boards like this one, including one in the UK. I’m thinking that stopping suddenly may not be the best method, but no evidence based information exists.

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Hi, would you be able to give me the website for the message board in the UK?
Thank you!

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