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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My first stint I was diagnosed with stage 2 BC at 49 - I had partial mastectomy then 3 years tx and 2 years Letrozole - I asked to do letrozole for 2 in stead of 3 years because I heard it was hard on your bones
I had also done chemo and radiation. Two years after completing 5 years of those drugs I was diagnosed with Stage 2 BC - in exact same spot.
I had a double mastectomy and rejected chemo and radiation this time. Have just completed 5 years on Anastrozole- hot flashes galore- looking forward to saying goodbye to those - other side effects hard to tell as I was going through a fairly turbulent time when I went back on those meds. I am 62 now and hoping to get my health back this year!

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@suepeet

My first stint I was diagnosed with stage 2 BC at 49 - I had partial mastectomy then 3 years tx and 2 years Letrozole - I asked to do letrozole for 2 in stead of 3 years because I heard it was hard on your bones
I had also done chemo and radiation. Two years after completing 5 years of those drugs I was diagnosed with Stage 2 BC - in exact same spot.
I had a double mastectomy and rejected chemo and radiation this time. Have just completed 5 years on Anastrozole- hot flashes galore- looking forward to saying goodbye to those - other side effects hard to tell as I was going through a fairly turbulent time when I went back on those meds. I am 62 now and hoping to get my health back this year!

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I have been off of all endocrine therapies for more than two years and the hot flashes continue for me. I am on a few other drugs, so I never really know for sure what gives me which gifts. I keep a paper fan close and that really does help. When it is a 100* I just stay home for fear of dehydration.
You are truly resilient, I applaud you. What are your plans for health moving forward?

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Well I’m hoping to not get sick again! I had a minor heart attack about 7 years ago - stress induced and just recovering from ruptured appendix in August then 4 months of battling CDIF- so hoping I’m done with the bad shit - will work on improving my diet and exercise regime lol

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@suepeet

Well I’m hoping to not get sick again! I had a minor heart attack about 7 years ago - stress induced and just recovering from ruptured appendix in August then 4 months of battling CDIF- so hoping I’m done with the bad shit - will work on improving my diet and exercise regime lol

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Hi Sue, congrats on completing 5 years of AI treatment. Phew.

If you'd like to have some virtual walking buddies, you might wish to join this discussion group.
- Let’s Go Walking! Join me for a virtual walking support group https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/

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@kathyomaha55

I was on Anastrozole for 12 months - had to beg my oncologist to switch it for me - I had to threaten to stop taking anything. My hand pain was so bad it was effecting my life - it was a constant 7. She switched me to Exemestane (after I went to a Rheumatologist to make sure nothing else made my hands hurt). It took 3 months for the hand pain to go away - I mostly have a level 1 or 0 - but it took 3 months. I still have insomnia - I take CALM for sleep - it's just magnesium but it really helps. I've now completed 3 yrs. total and am looking forward to the end of 5 years. I had a serious talk with my doctor about whether I could stop at 5 years. She agreed I could. Thought continuing it longer would only reduce my re-occurrence odds by maybe < 2%. I plan on stopping it November 2023. My hair loss stabilized. Also on anastrozole my toes and shoulders hurt as well - that is all gone. I read like 40% of women stop all AI's from the side effects. I wish doctors took the side effects more seriously. My hand pain resolved at about 12 weeks - good luck to you!

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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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@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 took Tamoxifen and had really no side effects for 3 months but broke my leg and ended up with a blood clot so had to switch to Femara which is relatively new like a week. It seems like I’m having insomnia. I’m thinking about restarting Tamoxifen when I’m done with other issues. It’s a catch 22

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I took Anastrozole for a year and a half. I had no libido. My husband said I was not myself. I was depressed and just not happy. I was losing interest in doing things I enjoyed. I decided to stop taking it six months ago to see what would happen. Within a short time those symptoms went away and I was back to my old fun loving self. Now, however, I am having aches and pains in places that that were never a problem and were not injured. It seems to be in various tendons and muscles. The pain moves around from behind my knees to the sides of my knees. I saw my regular doctor and told her. She is not my prescriber of the Anastrozole but thinks these symptoms I am having may be related to going off the medication. Has anyone else had this problem?

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@mboat123

I took Anastrozole for a year and a half. I had no libido. My husband said I was not myself. I was depressed and just not happy. I was losing interest in doing things I enjoyed. I decided to stop taking it six months ago to see what would happen. Within a short time those symptoms went away and I was back to my old fun loving self. Now, however, I am having aches and pains in places that that were never a problem and were not injured. It seems to be in various tendons and muscles. The pain moves around from behind my knees to the sides of my knees. I saw my regular doctor and told her. She is not my prescriber of the Anastrozole but thinks these symptoms I am having may be related to going off the medication. Has anyone else had this problem?

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

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@colleenyoung

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

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No. I see my breast surgeons PA tomorrow and will talk with her before I contact my oncologist. A friend who has had breast cancer and on an aromatase inhibitor ended up with an autoimmune condition that was determined via an ANA blood test which I am going to ask about. I am so uncomfortable with the pain. I need someone to figure out what is causing it so we can treat it.

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@mboat123

No. I see my breast surgeons PA tomorrow and will talk with her before I contact my oncologist. A friend who has had breast cancer and on an aromatase inhibitor ended up with an autoimmune condition that was determined via an ANA blood test which I am going to ask about. I am so uncomfortable with the pain. I need someone to figure out what is causing it so we can treat it.

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Any update, @mboat123?

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