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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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callalloo | @callalloo | Mar 17, 2022
In reply to @cedar75 "I have had to come off my AI med because of bilateral hand and wrist pain...." + (show)
@cedar75

I have had to come off my AI med because of bilateral hand and wrist pain. I could not tie my shoes or pick up a fork and had pain in my hands that would awaken me. I certainly also had other irritating side effects like nausea, dry itchy eyes, hair loss, brain fog. I have now been off for a month. The nausea is at least gone but bilateral hand pain is still here. Can anyone tell me if this pain and hand dysfunction will go away or are the drugs effect permanent. How long does it take to if ever reverse these effects.? I am very little and clearly the AI did its job in lowering whatever estrogen I had. I had begged my oncologist to check estrone and estradiol levels before I started the drugs and after I had been in them for 6 months when side effects were becoming more noticeable. The doctor refused saying they do not have good standard clinical tests to measure these levels. I found that interesting as in any drug study with these drugs, these levels are measured. I was more interested not in the specific level but the percent of change. Honestly, I have felt like I aged 10 years after being on this drug for 9 months. Many thanks for listening!! Wish everyone a healthy New Year!!

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My oncologist tests hormone levels before putting a patient on aromatase inhibitors and also later to monitor the change in them. I can't opine as to the effectiveness of the tests but he's at a world-renowned medical center and seems conservative in doing only what makes sense.

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1 reply
callalloo | @callalloo | Mar 17, 2022

Estrogen is a very powerful hormone. Suppressing it is a significant change for the system. Is it reasonable to consider that, once off an aromatase inhibitor, and the body establishing a new norm and remaking estrogen, which it does even after menopause, there can be the same mood changes that some women have during menstruation and/or menopause? The body would be adjusting to yet another new normal which cancer, surgery and other cancer treatments and the related stresses (not to mention all of this happening during a pandemic) have triggered a plethora of already?

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cedar75 | @cedar75 | Mar 17, 2022
In reply to @callalloo "My oncologist tests hormone levels before putting a patient on aromatase inhibitors and also later to..." + (show)
@callalloo

My oncologist tests hormone levels before putting a patient on aromatase inhibitors and also later to monitor the change in them. I can't opine as to the effectiveness of the tests but he's at a world-renowned medical center and seems conservative in doing only what makes sense.

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Which medical center are you at?

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windyshores | @windyshores | Mar 18, 2022
In reply to @callalloo "Cleveland Clinic." + (show)
@callalloo

Cleveland Clinic.

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I tapered off my Femara. Noone told me to. It just kind of made sense to me, and wouldn't do any harm.

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flowers7777 | @flowers7777 | Mar 18, 2022
In reply to @loisanne "Well, this kind of answers my question. I wanted to know how long it would take..." + (show)
@loisanne

Well, this kind of answers my question. I wanted to know how long it would take to get out of my system. I HAD to come off of Anastrozole. I was hurting all over. It will not be 2 months until the middle of March. I could hardly function. I knew about side effects, and I rarely have them from medications, but this is/was terrible. After consulting my oncologist, she did say that some of her patients said it took a long time to finally feel better. She ordered Tamoxifen, which I have not started yet. I did not want to take that on top of Anastrozole. I will wait until I feel back to normal. In fact, I will wait until after my breast surgery to start another medication. That will be March 30th. Does anyone have any info regarding taking Tamoxifen? The only info from my gynecologist was that it is in the same family as Anastrozole, leading me to believe I still may have those side effects. The only thing I have heard is it will not be as bad.

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I wasn't put on Anastrazole until a couple months after the breast surgery.

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loisanne | @loisanne | Mar 18, 2022

And, how did that go for you? How long have you been on it? Any problems?

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loisanne | @loisanne | Mar 18, 2022

It is now, 2 months since I stopped Ansastroloze and I still hurt. I contacted my oncologist and she should said the longest time she has heard from patients is 3 months. That was promising! Hopefully, this is going to go away. The pain is in my shoulders. At least, that is what I think. It is really my upper arms. It is bad!

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callalloo | @callalloo | Mar 18, 2022
In reply to @suepeet "most of these comments are 2-3 years old. I just finished my second round of 5..." + (show)
@suepeet

most of these comments are 2-3 years old. I just finished my second round of 5 years on Anastrozole and am wondering about potential long term effects this will have done to my body. I finished taking them just 2 days ago so haven't yet experienced any side effects.

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One suggestion is to research what estrogen depletion does to the body and address anything that might seem as if it applies. I did not take an aromatase inhibitor after surgical removal of a stage 1A tumor in October, 2021. The reason I did not was because of the predictable hastened bone loss. I know someone currently trying to deal with osteonarcosis of the jaw from the side effects from the drugs used to 'treat' osteoporosis and it's very difficult. For one thing, neither her former dentist or oral surgeon will work on her because of the risks the osteonarcosis puts her at. If you haven't been monitoring bone density, though I expect all oncologists do so, a DEXA scan will analyze how your bones are doing. You're probably fine but might be able to take some proactive steps. Another side effect of the aromstase inhibitors is elevated cholesterol and you can remedy that. In an abundance of caution, I'd have an endopat test done as well since depleting the body of estrogen seems to affect endothelial tissue. I should add that I have the genetic marker for heart disease so might be more cautious than most. And I have a low risk for recurrence according to the OncotypeDX and a private geneticist so weighed the side effects of the anti-hormone meds versus quality of life and other known risks. Being older probably tilted me more toward the known present and quality of life today versus an unknown possible future risk but with the odds in my favor if the geneticist and my oncologist are correct.

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mboat123 | @mboat123 | Mar 19, 2022
In reply to @colleenyoung "@mboat123, are you taking another kind of aromatase inhibitor or tamoxifen?" + (show)
@colleenyoung

@mboat123, are you taking another kind of aromatase inhibitor or tamoxifen?

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I see my oncologist next week to talk about next steps. I don't want to take anything until we can figure out what is causing my pain. It could be nerve related or something besides a side effect of the anastrozole.

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