1. < Breast Cancer

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.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

flowergal | @flowergal | Jun 10 6:00pm
In reply to @dlmdinia "I was feeling similarly after a year on Anastrozole. My knees had me almost crippled. I..." + (show)
@dlmdinia

I was feeling similarly after a year on Anastrozole. My knees had me almost crippled. I switched to Letrozole and at the same time began taking collagen supplements. It was hard to tell which was responsible for my knees returning to normal until I accidentally bought a biotin supplement which did not include collagen. My knees began to ache, I realized my mistake and got back on the collagen and am almost to the end of my five years of AIs. I have some knee issues, but they are definitely arthritis related. I use collagen capsules for convenience but I've successfully used gummies and powder. I'm 69.

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Curious as I seem to have the same knee symptoms. Have been off Anastrozole for two weeks. No resolution of knee stiffness. Very hard to get up or down, go up stairs etc. I do take biotin and have collagen. I will have to try to take it more regularly to see if it will resolve. My oncologist is going to switch me to letrozole after another two week break.
I hope you keep these symptoms at bay.

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doesitforme02 | @doesitforme02 | Jun 14 1:43am

In 2022, I was identified as BRCA1. My family has had a history of breast cancer on my maternal side. My mother passed away with Ovarian Cancer. I had my ovaries removed and there was no cancer. It's going on two years with Anastrozole. All Mammograms and MRI's good. Now I experience sleepless nights. I saw a blog where a woman stated that when she was taken off this medicine eventually, she had a good night of sleep after a couple of days. I am looking forward to that. As a result of taking this medication, I now have to take FOSAMAX. This medication and the Anastrozole causes alot of pain throughout your body. I am a very active person, but I do get tired. I think when I get home from our business that I will sleep tight, Nada...I squirrel away in an extra room to deal with the side effects. It would be nice to wake up next to my husband in the morning.

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3 replies
Mentor
Laurie, Volunteer Mentor | @roch | Jun 14 7:54am
In reply to @doesitforme02 "In 2022, I was identified as BRCA1. My family has had a history of breast cancer..." + (show)
@doesitforme02

In 2022, I was identified as BRCA1. My family has had a history of breast cancer on my maternal side. My mother passed away with Ovarian Cancer. I had my ovaries removed and there was no cancer. It's going on two years with Anastrozole. All Mammograms and MRI's good. Now I experience sleepless nights. I saw a blog where a woman stated that when she was taken off this medicine eventually, she had a good night of sleep after a couple of days. I am looking forward to that. As a result of taking this medication, I now have to take FOSAMAX. This medication and the Anastrozole causes alot of pain throughout your body. I am a very active person, but I do get tired. I think when I get home from our business that I will sleep tight, Nada...I squirrel away in an extra room to deal with the side effects. It would be nice to wake up next to my husband in the morning.

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@doesitforme02

Welcome to Mayo Connect, this is great group to get support and find women who have similar experiences.

Your dealing with what many women struggle with, side effects vs risk of a medication. In your case risk , you are at higher than many because of BCRA gene.

Have you discusses the side effects with your provider? Ask about using an anti-inflammatory medications (such as aspirin or ibuprofen), acupuncture to ease the pain or in your case a sleep medication.

Hope you find relief, it is hard to function without a good night sleep.

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1 reply
bjohnson511 | @bjohnson511 | Jun 14 8:21am
In reply to @roch "@doesitforme02 Welcome to Mayo Connect, this is great group to get support and find women who..." + (show)
@roch

@doesitforme02

Welcome to Mayo Connect, this is great group to get support and find women who have similar experiences.

Your dealing with what many women struggle with, side effects vs risk of a medication. In your case risk , you are at higher than many because of BCRA gene.

Have you discusses the side effects with your provider? Ask about using an anti-inflammatory medications (such as aspirin or ibuprofen), acupuncture to ease the pain or in your case a sleep medication.

Hope you find relief, it is hard to function without a good night sleep.

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Laurie, I wish the mayo clinic could do something about these pills that have such horrible side effects for women. I was on anastrozole for six months and had to go off of it. I could no longer play golf due to the pain in my hands at the trigger finger thumb and my baby fingers. Joint aches fatigue. I am 72 have always had a very active lifestyle and never was sick. A cold or the flu once in a while in my life. Breast cancer, invasive carcinoma my life has changed. I went off of the pill waiting to see the doctor to figure something else out. I can’t live like this . We need your help.

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2 replies
Mentor
Laurie, Volunteer Mentor | @roch | Jun 14 9:02am
In reply to @bjohnson511 "Laurie, I wish the mayo clinic could do something about these pills that have such horrible..." + (show)
@bjohnson511

Laurie, I wish the mayo clinic could do something about these pills that have such horrible side effects for women. I was on anastrozole for six months and had to go off of it. I could no longer play golf due to the pain in my hands at the trigger finger thumb and my baby fingers. Joint aches fatigue. I am 72 have always had a very active lifestyle and never was sick. A cold or the flu once in a while in my life. Breast cancer, invasive carcinoma my life has changed. I went off of the pill waiting to see the doctor to figure something else out. I can’t live like this . We need your help.

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@bjohnson511
I hear you, and wish I had power to provide a different solution, but like you I am survivor of breast cancer who could not tolerate AIs. I had different side effects and eventually discussed with oncologist the risk of stop taking AIs. I am low risk for recurrence and spreading.

Not everyone has that option, my sister is at higher risk of reoccurrence and her provider strongly suggest she stays on.

The reason I am at lower risk then my sisters even though my cancer was stage 2 is because I had chemo and radiation after tumor and few lymph nodes were removed. . My sister's was caught very earlier and she just had lump removed.

I hope you and your provider can come up treatment plan that reduces your risk but also does not interfere with your quality of life.

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flowergal | @flowergal | Jun 16 7:58am
In reply to @bjohnson511 "Laurie, I wish the mayo clinic could do something about these pills that have such horrible..." + (show)
@bjohnson511

Laurie, I wish the mayo clinic could do something about these pills that have such horrible side effects for women. I was on anastrozole for six months and had to go off of it. I could no longer play golf due to the pain in my hands at the trigger finger thumb and my baby fingers. Joint aches fatigue. I am 72 have always had a very active lifestyle and never was sick. A cold or the flu once in a while in my life. Breast cancer, invasive carcinoma my life has changed. I went off of the pill waiting to see the doctor to figure something else out. I can’t live like this . We need your help.

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I agree we need help. What is life if you can't participate?

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flowergal | @flowergal | Jun 16 8:02am
In reply to @denisesjourney123 "Do any of you pink queens know if it is fine to take vital protein collagen..." + (show)
@denisesjourney123

Do any of you pink queens know if it is fine to take vital protein collagen peptides daily if your on Anastrozole? I’m estrogen positive. I’ve been taking collagen for years and it helps with hair and nail health. If the blocker is suppose to deplete estrogen totally from the body will this product increase estrogen? Thanks

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I believe if you search collagen you might find more information. My doctor says ok but I have read that it is very controversial if you are estrogen positive.
Personally I take it for my bones.

REPLY
dlmdinia | @dlmdinia | Jun 17 8:20am
In reply to @denisesjourney123 "Do any of you pink queens know if it is fine to take vital protein collagen..." + (show)
@denisesjourney123

Do any of you pink queens know if it is fine to take vital protein collagen peptides daily if your on Anastrozole? I’m estrogen positive. I’ve been taking collagen for years and it helps with hair and nail health. If the blocker is suppose to deplete estrogen totally from the body will this product increase estrogen? Thanks

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Estrogen produces collagen, not the other way around. Suppressing estrogen leads to reduced collagen which probably explains all the joint pain. So your answer is, no. Collagen supplements do not increase estrogen.

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ppat4pr | @ppat4pr | Jun 17 12:34pm
In reply to @doesitforme02 "In 2022, I was identified as BRCA1. My family has had a history of breast cancer..." + (show)
@doesitforme02

In 2022, I was identified as BRCA1. My family has had a history of breast cancer on my maternal side. My mother passed away with Ovarian Cancer. I had my ovaries removed and there was no cancer. It's going on two years with Anastrozole. All Mammograms and MRI's good. Now I experience sleepless nights. I saw a blog where a woman stated that when she was taken off this medicine eventually, she had a good night of sleep after a couple of days. I am looking forward to that. As a result of taking this medication, I now have to take FOSAMAX. This medication and the Anastrozole causes alot of pain throughout your body. I am a very active person, but I do get tired. I think when I get home from our business that I will sleep tight, Nada...I squirrel away in an extra room to deal with the side effects. It would be nice to wake up next to my husband in the morning.

Jump to this post

I was on Letrozole for 5 years & stopped taking it a few months ago.. I do have trouble sleeping at night but put me in a chair in front of the tv & off I go for maybe 2 hours. 🤪

REPLY
doesitforme02 | @doesitforme02 | Jun 18 11:56pm
In reply to @doesitforme02 "In 2022, I was identified as BRCA1. My family has had a history of breast cancer..." + (show)
@doesitforme02

In 2022, I was identified as BRCA1. My family has had a history of breast cancer on my maternal side. My mother passed away with Ovarian Cancer. I had my ovaries removed and there was no cancer. It's going on two years with Anastrozole. All Mammograms and MRI's good. Now I experience sleepless nights. I saw a blog where a woman stated that when she was taken off this medicine eventually, she had a good night of sleep after a couple of days. I am looking forward to that. As a result of taking this medication, I now have to take FOSAMAX. This medication and the Anastrozole causes alot of pain throughout your body. I am a very active person, but I do get tired. I think when I get home from our business that I will sleep tight, Nada...I squirrel away in an extra room to deal with the side effects. It would be nice to wake up next to my husband in the morning.

Jump to this post

I do meet with my oncologist aides twice a year. The last time I met with them I was fine. Just doing everything I can to ward away the side effects. However, during the past two months, I was unable to workout exercises. We had so much to do around the house for renovations. I asked my husband does working around the store while lifting boxes and doing other things constitute as exercise. He could tell I was getting frustrated with my obligations getting in the way. He gave me a pass. This week, I got two workouts in. I am back to square one. It's a struggle, but I will keep trying. These past two weeks I have been experiencing alot of hot flashes. I am not sure if it is the weather or just that I have not been working out like I usually do. I will figure it out.

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