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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@sequoia

Sounds like you are still having SEs?? Is that right. I’ll have to look up arterial tachycardia. Are you still taking meds for the issues. I’ve been 2 1/2 years on Anastrazole. I have terrible hip pain to the point of ‘almost’ not being able to walk without pain. I quit the Anastrazole for 3 months to see if that made a difference. It didn’t make a difference. The pain is worse now than before and in my mind a wonder if 3 months wasn’t enough time ti correct things. It is affecting my knee now. I bought orthotics from a podiatrist thinking that would make a different. I am just in the beginning of this 8 days of wearing but I’m not seeing any change. Probably too early to tell. Appt on 4 May with podiatrist.

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It's also possible that this pain is unrelated to the anastrozole. The armoatase inhibitors can cause a lot of different bone and joint pain, not in all people, I hasten to add though. But they're not the only possible causes. Or maybe you can switch to another AI and have less discomfort. Does your doctor have any ideas for helping with this? I hope so...

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@teri512
Have a talk with your oncologist. I first started anastrozole and could barey walk as well as the fatigue. My oncologist then switched me to letrozole which was not quite as bad but then we finally switched to exemestane. I did quite well with that (putting up with hot flashes) and have been on this for 3 years, but the fatigue has become worse and feeling jittery and weak to the point I just had another talk with my oncologist. We agreed to go off of this for 1-2 months and then re-evaluate. I cannot go on tamoxifen as I had a stroke 2 years ago so the chance of blood clots are high. Not everyone has the same reaction to these pills so if one doesn't work, again, talk with your oncologist and maybe try a different AI. Hoping it all goes better for you.

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Switching to brand name or to a different manufacturer can make a difference, as well as or instead of switching to a different AI. I took brand name Femara because I reacted to two generics. At the end of 5 years I found a generic I could tolerate- too late after spending all that money! In general, I do well with TEVA meds.

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@teri512

I have been taking Anastrozole for 10 months now and the side effects started 3 months into taking the pill. I am totally worn out, my body gets hot and it feels like ants biting me all over, acid reflux, can't sleep, muscle pain. I started the Zoledronic acid infusion twice a year. It causes your bones to hurt like the Neulasta patch did. And it has made or caused arthritis worse.

What happens if you take yourself off of the Anastrozole for a week or so?

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I know that my oncologist has had, or still has, patients who've taken a holiday from anastrozole but your doctor might have a different idea. I think doctors would prefer continuity of drug intake but the reality is that a temporary appraisal time is better than complete non-compliance so they are realistic about some peoples' tolerance levels. And if a holiday off the drug alleviates the discomfort, it's easier to identify that particular drug as trigger.

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@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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Hello, I’ve just finished taking anastrozole like you after 7 years. A few weeks after stopping I started getting daily headaches which I didn’t experience while taking the medication. My oncologist has referred me for a CT head scan which I am due to have this weekend. Understandably, I am so anxious it may be secondary breast cancer but am hoping it may be withdrawal from the drug.

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@jaxtuck

Hello, I’ve just finished taking anastrozole like you after 7 years. A few weeks after stopping I started getting daily headaches which I didn’t experience while taking the medication. My oncologist has referred me for a CT head scan which I am due to have this weekend. Understandably, I am so anxious it may be secondary breast cancer but am hoping it may be withdrawal from the drug.

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I actually had these headaches beginning every afternoon for a few months. They tapered off and went away. I am glad you are getting it checked out. I did get relief from an aleve.
Are you getting relief from these headaches?

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@auntieoakley

I actually had these headaches beginning every afternoon for a few months. They tapered off and went away. I am glad you are getting it checked out. I did get relief from an aleve.
Are you getting relief from these headaches?

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I take ibuprofen which helps a bit but doesn’t get rid of the pain entirely.

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I have been on Astrozole for 6 months after surgery for a hormone positive, lymph node negative low grade small breast cancer. I have started having cardiovascular issues- high blood pressure for the first time in my life, and I just had amaurosis fugax ( basically an eye stroke). It seems too coincidental to not be related to the taking of the drug. Anybody have anything like this happen to them?

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@karendb

Hi. I started anastrozole about 18 days ago. I too have few side effects, a bit of bone pain, sometimes trouble getting to sleep. My problem is it's been almost 3 months since completing chemo and I'm still getting neausea especially in the morning. I never was a breakfast eater so it's hard to even eat a soda cracker. Has or is anyone else suffering from neausea? Could it be from the anastrozole?

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I have been on Anastrozole for nearly five years. During this time I have had bouts of nausea followed by vomiting. The strange thing is, after I throw up I feel fine. This has probably happened about thirty times over this period. It was worse in the first couple of years.

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@karendb

Hi everyone. Just to let you all know, I had my 1 year mammogram and....it came back clear! Yay me! I’m finding the anastrozal a bit difficult but if it means no cancer ever again, I’ll be taking it till 2024!

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I also stop in October 2024 I hope I can last that long. the aches and pains and everything else So tired of feeling like this.

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