Completed 5 years of anastrozole. Withdrawal symptoms? Side effects?

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.

@marthannw
In furtherance of your thoughts on "stopping suddenly may not be the best method," after almost three years of anastrozole. I switched AIs to exemestane last October and had an allergic reaction to it. While waiting for the rash to go away, I was off all AIs for about 10 weeks and had headaches every day. I never have headaches, so this development was most unwelcome and, at the time, I had no idea why I was getting them. I then went on Letrozole in January and the headaches have disappeared. I'm usually suspicious of my trying to find cause-effect relationships (because I don't journal these things on a daily basis), but this might be one. I certainly agree in theory that stopping a medication as powerful at an AI is going to have effects, and that slowly weening from it might give one's body time to adjust. Thank you for your post! (Now, if I only can remember this good advice....)

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.

Letrozole worked great for about 6 months but got tougher and tough on my joints. I took a month break after 2 years and then switched to Exemestane. It has been a terrific relief for me. 18 months and no biggie side effects!
I really feel each body has a different reaction to different aromatase inhibitors. I hope you find the right fit for your body❣️

@jkhambati
I started with anastrozole and lasted maybe 2-3 months...could hardly walk the pain was so great in my ankles, hands, and spine. I was next placed on letrozole and had extreme headaches as well as the pain and only made it a month before speaking to my oncologist. I've been on exemestane for about 1 1/2 years now and have been pretty much okay. Do have hot flashes and sometimes trouble with sleeping. Overall, however, this one for me is quite doable. I'm only taking a break now as I'm trying to get my weight down so will be off of it for about 1 month. Everyone reacts differently to medications so you will only know if you try. By all means though, speak up with your oncologist - if you don't talk to him/her, the oncologist won't know what is going on. Good luck...this adventure is not very easy!

I started with Anastrozole within about 4 months - My hands started with the join pain (also shoulders and toes!) that just got worse & worse. At about 6 months - after I discussed it with my oncologist, I went off it for 1 month. No change in the hand pain. She then had me go back on it & sent me to a Rheumatologist to see if I had RA in my hands. I finally got in about 8 weeks later, and she had to run her tests. By then I was at almost the 1 year mark for taking the Anastrozole. No arthritis - so she finally switched me to Exemestane. I have to say - it took my hand pain (at about a 7 daily) about 10 to 12 weeks to finally diminish. But it went down to about a 1 and sometimes it's zero. So my 1 year on Exemestane was in November. Like Trixie I still have hot flashes & insomnia but I think I can make the full 5 years now. I take CALM gummies for the insomnia - it really seems to work! It's just Magnesium.

Hello - I had very similar symptoms and worked with my provider - ultimately switched to exemestane as well. My pain resolved markedly and I was able to complete my recommended length of therapy. Very glad I talked to my provider about an alternative aromatase inhibitor.

@thatgirl2, can you share your experience completing exemestane? Did you experience symptoms once you stopped the drug?

Hello, I’m just curious if you found an alternative treatment? I started Anastrozole for two months now and I’m feeling pain in the joints of my feet already. I am not overweight and never had any health issues until breast cancer. If I stay on the inhibitor then my chances of reoccurrence drops from 26% to 14%.

So very glad to have found these posts. I have been taking Armidex for over 10 yrs. I just stopped 9 days ago. Is it possible that is the cause of this extreme fatigue I am experiencing? I am aching in neck, back, chest, breast… It never crossed my mind it could be stopping the Armidex.