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.

@lisman1408

All of these comments make my heart ache for each of us who must try to live some kind of quality life, in spite of taking these drugs to help prevent recurrence of breast cancer. How I wish to see the day that better and more tolerable treatments are available to breast cancer survivors!

But on a more positive note, as a 68 year old woman, I’m also grateful for what we do have to help us to live. It’s not long ago that breast cancer killed many more women prior to these nasty drugs were widely available. I’ve been on Anastrozole, Tomoxifin, and have now been on Exemestane for two years. It’s been better than the others, but still causes me challenges.

All of these medications have side effects that can absolutely dreadful!! For me the worst side effect has been some loss of cognitive function. I’ve read numerous articles about how estrogen effects our ability to think clearly. For me any of the symptoms from these drugs are just like going through menopause all over again. But in taking these drugs the symptoms are more pronounced and more bothersome than menopause was : especially knowing that I am taking a drug to save my life, but that the drug is also causing the quality of my life to be less than it could be without it. It sucks!!!

Thank you to all of you here on this message board! It’s a true relief to be able to connect to other women who really ‘get it’! ❤️

Jump to this post

I have gone back and forth debating this post, reading it, deleting it because there could be so much more suffering. But I really do get it. I had to bail on the meds at 4.8 years instead of 5, so I have been off them for 8 weeks. I thought it was mostly because of the increase in pain and inability to get anything done. I didn’t realize the cognitive function until this week since I had been barely moving anyway. One of my hobbies is quilting, so when I found some energy to start working on a block that I wanted to enlarge, (It already took me 3 days just to get out the fabric and make sense of the palette), I knew something was waaaay off. I stared at those numbers…I would normally do the calculations for the ratios and proportions with my eyes closed. I messaged my son that LOL I needed math help! This has all hit me hard in the last 8 months which is so confusing and harder to deal with than the pain from the meds. Maybe I was able to compensate better prior to now. But I’m 5 years older too. And in those 5 years, we have had 2 weddings, a grandchild and another on the way. I got my life wish and more, which was always to live long enough to raise my boys. Here’s to having more next steps and living each part of each day that I am being gifted.

REPLY
@rjc

I have just completed 5 years taking anastrozole for stage 2b breast cancer. I had surgery, chemo, and radiation in 2017 I then was prescribed anastrozole for 5 years. I also was prescribed an IV infusion of zoldronic acid every 6 months to counter act the calcium loss caused by the anastrozole. Both of these medications have caused side effects like joint pain, terrible hot flashes, hair thinning and loss. Whenever the doctors asked about side effects of these medications I would tell them, but they seemed unconcerned and just brushed it aside.
My oncologist changed 3 times during the last 5 years. My last 2 oncologists I never met because of covid restrictions so we just did phone appointments. The last time I spoke to my second oncologist he mentioned that perhaps I should continue the anastrozole for 10 years. I was a bit upset when he mentioned this, mostly because I was tired of terrible hair and joint pain. This year I was assigned a new oncologist and never having met me she put all of my information into her computer program and quoted me the stats and benefits of taking anastrozole over 5 years. Turns out that the benefits of taking anastrozole over all the other treatments I went through are very minimal, something like a small percentage of increased survival rate over a ten year period. We weighed the benefits over the side effects and decided to stop the medication.
I am 3 three weeks into not taking anastrozole and have been experiencing terrible knee pain. I did not make the association with withdrawal symptoms from my medication until I started researching this and came upon this discussion group. I am praying that these pains will not be long term as I am an active person hitting 70 soon and do not want to be incapacitated the rest of my life.
My new oncologist also told me that my treatment included 6 rounds of zoldronic acid. To date I have received 9 rounds. Zoldronic acid also has side effects like hair loss and joint pain. After my last treatment in December my joints, especially my knees were terribly sore and stiff for 2 weeks after the treatment.
I have decided not to follow through with my next scheduled treatment of zoldronic acid.
It seems like a never ending cycle with prescriptions, one is given and another is given to counteract the side effects of the first one and then another given to counteract the side effects of that one.
Thank you to those of you in this discussion group, without hearing your experiences I may have pursued unnecessary treatment for my knee pain. As it is I shall wait to see if with the withdrawal of the anastrozole it subsides before doing anything more about it.

Jump to this post

I am SO glad you have a new oncologist. I cannot believe how lucky I am that mine insisted that I see him through Covid. No letting up there. FYI—I was recently at the hand doctor for tendinitis and asked him if he was familiar with the bone loss medications since in my head I was thinking it might be related. He said no, he’s just a mechanic! That the best doctor for my bones is my endocrinologist which they also assigned me at the beginning of this journey. She is my rock at this point besides my onc.

REPLY

I have completed anastrosole in 21. I took one dose of Zometa and had the reaction of upper extremities being painful to move and pain when walking. This occurred 2 days after the infusion- I was given steroids and Benadryl, and it cleared in reverse order that the pain occurred- it was bizarre. I don’t plan to take another dose. What other bone meds have been used?

REPLY
@nanaof3

I have completed anastrosole in 21. I took one dose of Zometa and had the reaction of upper extremities being painful to move and pain when walking. This occurred 2 days after the infusion- I was given steroids and Benadryl, and it cleared in reverse order that the pain occurred- it was bizarre. I don’t plan to take another dose. What other bone meds have been used?

Jump to this post

Congratulations on finishing Anastrozole! If you did have side effects from Anastrozole- how long did it take after finishing med for them to go away?

REPLY
@sequoia

Congratulations on finishing Anastrozole! If you did have side effects from Anastrozole- how long did it take after finishing med for them to go away?

Jump to this post

It took a year before I felt myself again. I had atrial tachycardia and had to have an echo which showed thickened septum, multiple bladder infections, and weight gain. All side effects were corrected with meds. The side effects are manageable.

REPLY
@nanaof3

It took a year before I felt myself again. I had atrial tachycardia and had to have an echo which showed thickened septum, multiple bladder infections, and weight gain. All side effects were corrected with meds. The side effects are manageable.

Jump to this post

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.

REPLY
@nanaof3

I have completed anastrosole in 21. I took one dose of Zometa and had the reaction of upper extremities being painful to move and pain when walking. This occurred 2 days after the infusion- I was given steroids and Benadryl, and it cleared in reverse order that the pain occurred- it was bizarre. I don’t plan to take another dose. What other bone meds have been used?

Jump to this post

There are several threads in the osteoporosis section of Mayo Connect that might be of help. There are a lot of options depending upon stage of osteoporosis and drugs already taken for it. Since there are so many choices, I'd try to find a specialist treating osteoporosis since it may be that a long-term plan makes sense and some drugs preclude or limit later choices. Hope that helps and others with more knowledge will have specific ideas based on their experience.

REPLY
@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.

Jump to this post

I am sorry you are having joint issues, I am hopeful that your team is able to moderate this and keep you on track. Hips and knees always seem to be the first to hurt with people, but when you are dealing with treatments it is an added insult. Have they looked at these joints for arthritis changes?

REPLY
@auntieoakley

I am sorry you are having joint issues, I am hopeful that your team is able to moderate this and keep you on track. Hips and knees always seem to be the first to hurt with people, but when you are dealing with treatments it is an added insult. Have they looked at these joints for arthritis changes?

Jump to this post

I’m moving in that direction. Finding an orthopedic dr. Thank you.

REPLY

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?

REPLY
Please sign in or register to post a reply.