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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@queenmary25

I am on my first full month & feel stiff & slow to get up. I have developed terrible plantar fascitis. This is awful. My gynecologist told me that testerone will help with the side effects of Anastrozole. Does anyone know about this or is trying this method?

Regards

Mary

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@queenmary25
I don't know if testosterone will help, but that can also cause side effects. My suggestion would be to speak with your oncologist and ask about other aromatase inhibitors which may work better for you. I started on anastrozole with major debilitating factors, switched to letrozole which caused a lot of migraines, and finally have been on anastrozole for almost a year which is more doable. You won't know until you try to find out which is best for your body, so please don't be hesitant to speak with your oncologist for a better solution. Your physical therapist can help with a simple stretching program for the plantar fascitis.

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Hello , My mother had Stage 3b metastatic breast cancer 4 years ago . Had 8 rounds of chemo and 33 radiations , right after she was put on anastrozole she is 66 years old , she wanted to get off of it , she said her bones hurt all the time and her "chemo brain" was bad after 3 years . So it has been 2 months and for 2 months my mother has been in a Delirium state of mind . she got a catscan and blood work done and everything came back good . doctor says it wouldnt be from stopping the medication but I dont believe that ... they are saying she has dementia now ..... anyone else have anything like this happen ?

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@edini1712
Can you take her to the oncologist or call the oncologist up and say how bad she is feeling? Anastrozole is noted for really bad side effects. There are two others to use - letrozole and exemestane. I've been on all three and finally am staying on exemestane with the lease problems for me. Don't have the fuzzy brain anymore.

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@edini1712

Hello , My mother had Stage 3b metastatic breast cancer 4 years ago . Had 8 rounds of chemo and 33 radiations , right after she was put on anastrozole she is 66 years old , she wanted to get off of it , she said her bones hurt all the time and her "chemo brain" was bad after 3 years . So it has been 2 months and for 2 months my mother has been in a Delirium state of mind . she got a catscan and blood work done and everything came back good . doctor says it wouldnt be from stopping the medication but I dont believe that ... they are saying she has dementia now ..... anyone else have anything like this happen ?

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@edini1712
Anastrozole did indeed do a number of adverse things to my skin, hair, bones, and joints, etc., but from what I read, my memory issues were likely an effect of the chemotherapy (Taxol in my case) at my age. One bright note came a year ago with a report in which researchers suggested that women who used hormone-modulating breast cancer treatments (SERMs like tamoxifen and aromatase inhibitors like anastrozole) were less likely to be diagnosed with neurodegenerative disease. They followed almost 58,000 women for over 5 years which makes it a significant study. Here's the subject article:

https://oncology.medicinematters.com/breast-cancer/dementia/breast-cancer-treatments-may-ward-off-alzheimers-disease/17854966

Is that conclusive? No, it's just a very large study. I am sorry for what your mom is going through, and I can only hope that her doctors soon find a resolution to her situation.

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you should have some sorts of change.... I had to stop and it took about 10 weeks for me to feel, sleep, normal. My joints are still really bad, I still have tremors, but I think clearly and feel way better. Give yourself time.

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@jeaniebean

you should have some sorts of change.... I had to stop and it took about 10 weeks for me to feel, sleep, normal. My joints are still really bad, I still have tremors, but I think clearly and feel way better. Give yourself time.

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I switched from anastrozole to exemestane and it took me about the same amount of time 10 to 12 weeks for the severe joint pain to go away. I'm doing so much better on exemestane. I hope to go the full 5 years - I just passed 2 years.

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I am so glad to hear that because I stopped anastrazole December 21st and start exemestane on January 21st. My predictability score is 15-20% recurrence if I take it and 20-25 % Ii don’t. I am thinking that is high not up at least give it my best effort.

Thank you!

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Hi everyone,
My mother started taking Arimidex after breast cancer surgery. She has taken it for 5 years. Her doctor decided to have her stop taking it a few months ago but she has been feeling pain in her breasts (especially in the one removed). She had her routine controls a few days ago, everything was ok. We think it may be some sort of withdrawal symptom. Does anyone have this kind of effects after stopping Arimidex??
Your answers would be greatly appreciated 🙂

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@mahsume

Hi everyone,
My mother started taking Arimidex after breast cancer surgery. She has taken it for 5 years. Her doctor decided to have her stop taking it a few months ago but she has been feeling pain in her breasts (especially in the one removed). She had her routine controls a few days ago, everything was ok. We think it may be some sort of withdrawal symptom. Does anyone have this kind of effects after stopping Arimidex??
Your answers would be greatly appreciated 🙂

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Hi @mahsume, welcome to the Breast Cancer group on Mayo Connect. You'll notice that I moved your message to this existing discussion called "Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?" I did this so you can connect with other members who have stopped Arimidex after taking it for multiple year like @peaches2 @vikkr @cancersucks @javajude @sandrajo @rsc @auntieoakley @jadegrey @chriscake and others. Click VIEW & REPLY to see all the past posts.

I'm wondering @mahsume, did your mother mentioned the pain that she's experiencing at her recent checkup? Has this pain only appeared since coming off the medication?

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@mahsume

Hi everyone,
My mother started taking Arimidex after breast cancer surgery. She has taken it for 5 years. Her doctor decided to have her stop taking it a few months ago but she has been feeling pain in her breasts (especially in the one removed). She had her routine controls a few days ago, everything was ok. We think it may be some sort of withdrawal symptom. Does anyone have this kind of effects after stopping Arimidex??
Your answers would be greatly appreciated 🙂

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That’s a good question that Colleen asked, if this pain appeared directly after stopping the arimidex. If so, I would definitely mention this to the doctor as this could mean some hormone that is unwanted returning to the body from somewhere. Arimidex would have bonded to any estrogen coming from food or other glands and prevented it from essentially feeding any possible remaining cancer cells. If the breast soreness is linked to hormones after removing this drug, that would be something the doctor would address. There are some arguments for remaining on this drug in some cases, again your doctor could guide you better. This is only one possibility, but because I was younger when my breast cancer occurred, this was a conversation I had several times with my doctors.

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