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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Profile picture for baker1 @baker1

@smspaz59 I have been taking Anastrozol for 3months now. I have experienced all of them but they were very mild and quickly faded away. I had fatigue but that seems to have faded away too. Now I'm experiencing some weight gain. I hope that eases as the weather improves and I can get outside more. Now I walk 30 minutes a day to YouTube walking videos. It really helps combat the fatigue and soreness.

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Same here. I'm 76,on anastrozole 3 months. I am over weight and gained about 6 lbs. Hot flashes, no fatigue or aches. So far ,so good.

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Profile picture for dortbarb @dortbarb

I’ve been taking Verzenio with an aromatase inhibitor (first Anastrazole, now exemestane) for almost a year. I do not have MBC, but my doctor recommended Verzenio because of my lymph node involvement (four positive noses). The only side effect I’ve noticed is low white blood cell count. This caused me to stop taking Verzenio on two occasions. I resumed taking it after one to two weeks off. Because of this tendency I get frequent blood tests. Unless this side effect gets worse, I intend to continue taking Verzenio for the recommended two year period. I need to add that the body aches and stiffness caused by aromatase inhibitors are still present, but tolerable.

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Youll get the body aches from exemestane because its half life is about 50 hours.
That means you take tge pill Monday, youve got a full dose. Take it Tuesday, youve gotv1/2 Mondays a full dose of Tuesdays. Now youve got more than the original dose in your system.
If youve been on it more than a year, ask your dr if you can take it every other day or take a 2-4 week break.

But are you sure its not the Verzenio? Did you have any initial side effects with that? Diarrhea?

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I had 3 positive nodes, but I was thrown back when the doctor said the world "qualify"...that didn't sit well with me. So I didn't want to take the Versenio..It just didn't sit well with me...I'm still on the fence...
I do want to thank you for sharing your experience with me.

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Profile picture for dmosssadler @dmosssadler

Hello Ladies.

Just stated taking Anastrozole about 3 weeks ago, but Oncologist said that I "qualify" for a 2nd medication called Versenio due to MBC & lymphnode involvement.

Has anyone been on 2 different hormone therapy drugs after Chemo & radiation?

Oncologist said it's up to me if I want to take the 2nd medication but actually I don't want to take the Versenio.

Any feedback will be appreciated.

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I’ve been taking Verzenio with an aromatase inhibitor (first Anastrazole, now exemestane) for almost a year. I do not have MBC, but my doctor recommended Verzenio because of my lymph node involvement (four positive noses). The only side effect I’ve noticed is low white blood cell count. This caused me to stop taking Verzenio on two occasions. I resumed taking it after one to two weeks off. Because of this tendency I get frequent blood tests. Unless this side effect gets worse, I intend to continue taking Verzenio for the recommended two year period. I need to add that the body aches and stiffness caused by aromatase inhibitors are still present, but tolerable.

REPLY

Hello Ladies.

Just stated taking Anastrozole about 3 weeks ago, but Oncologist said that I "qualify" for a 2nd medication called Versenio due to MBC & lymphnode involvement.

Has anyone been on 2 different hormone therapy drugs after Chemo & radiation?

Oncologist said it's up to me if I want to take the 2nd medication but actually I don't want to take the Versenio.

Any feedback will be appreciated.

REPLY
Profile picture for Jane W. @ladyofthelake1

What milligrams did you take of Turneric and Glucosmine-chrondroitin daily? Did you get osteoporosis? Do you still take any other vitamins?

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I take the Kirkland brand Glucosamine 1500mg Chondroitin1200mg I pill combined. Turmeric Curcumin 1950 mg. I also take Viramin D and Calcium just Natures Bounty. I do have osteoporosis but I am on the low end more osteopenia. I was very religious about my vitamins , never missed them and still taking them. I really hope this helps you and of course check with your Oncologist about taking the vitamins, mine was fine with it. I hope this helps you💕💕

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Profile picture for lhwoz @lhwoz

Kathy- wondering about your switch from anastrozole to Exemestane. I am 1 year in on anastrozole and while I *might( be sleeping a tad better my joints/tendons orthopedic issues are off the chart. Hobbling like an old lady when I get up from sitting/bed/static position and I seem to be falling apart. I am 56 and is (was) very active in gym, HIIT classes, long hiking etc and now just can't tolerate:-(

Did the switch help in that way?

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I switched from anastrozile after one month to Letrozole. I took two brands of Letrozole (accord & aurobindo). So far at 5 months been on aurobindo letrozole and very minor joint pain to almost none. Still hot flashes but not to bad. I now get chills where radiation on upper left back where lymph nodes were hit and back peeled bad. I had one sentinel lymph node positive and one negative lymph node. 33 rad treatments just finished Sep 16, 2024. I do get headaches from time to time. Exercise walk every other day. Try to eat more salads. Age 62.

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Profile picture for db6524 @db6524

Hi, I just wanted to share with you that I took Letrozole for 5years , and just recently was able to go off the medication. I was having a hard time with the side effects but ended up reading a thread on trying a different manufacturer. It was suggested by several to try Breckenridge and when I did it was so much better for me. I did take Turmeric and Glucosmine-Chondroitin daily. I would of course discuss with your doctor. Hope this helps you as much as it did me.💕

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What milligrams did you take of Turneric and Glucosmine-chrondroitin daily? Did you get osteoporosis? Do you still take any other vitamins?

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Profile picture for jkh @jkh

Trixie and anyone else that has tried other AL’s, how long did you try the new drug? I am seeing my Oncologist in a couple of days and want to give letrozole a try. I’ve been on Anastrozole for 2 years and need to try something else for quality of life. I noticed that you gave letrozole a try and ended up with exemestane.

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Hi, I just wanted to share with you that I took Letrozole for 5years , and just recently was able to go off the medication. I was having a hard time with the side effects but ended up reading a thread on trying a different manufacturer. It was suggested by several to try Breckenridge and when I did it was so much better for me. I did take Turmeric and Glucosmine-Chondroitin daily. I would of course discuss with your doctor. Hope this helps you as much as it did me.💕

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Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to the group @maryts. I see that you wished to make a post here. To post a message, click REPLY (not the Report flag).

You wished to share that you
"stopped taking anastrozole in Sept. 2019 after 5 years of taking it and have extreme fatigue, difficulty sleeping, dizziness, lack of energy, brain fog, hot flashed at night and that you're unable to sleep."

You're not alone. Have you spoken to your oncologist about the inability to sleep and the symptoms?

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I took Letrozole for 5 years and went off on Aug 17 2024, about 6 weeks ago. I have had horrible withdrawal symptoms as well. I’ve experienced anxiety, nausea, dizziness ,itchy head, and fatigue. I have been to the ER, had several test and was told it was anxiety. Some say it could be withdrawals (pharmacists) but my oncologists says he hasn’t heard of this. Praying this subsides soon. I was so excited to be off the meds. I feel more research needs to be done concerning this issue.

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