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

@perri I also had horrendous itching starting on the head and then armpits and all over my body. Also had it with letrozole. I don't seem to have that problem with exemestane.

Good morning Trixie. two questions: do you have any joint pain with Exemestane and is it proven to be as effective at preventing recurrence as Arimidex? Can you tell I'm ready to throw my Arimidex off the top of a tall building? 🙂

@sparklegram
I do have some joint pain in my hands and heels of feet, but not as horrific as the anastrozole and letrozole. Once in a while I get a little depressed and have some nights I cannot sleep for which I will take melatonin. Out of the three aromatase inhibitors, this for me has the least problems. I do take it at night. In the beginning I had many hot flashes and sweats but over the last two weeks those have diminished. All three aromatase inhibitors are supposed to be as effective as each other.

Hi @perri @rsc, welcome to the Breast Cancer group on Mayo Clinic Connect.

For everyone: There are a few discussions about anxiety and emotional health happening in the "Cancer: Managing Symptoms" group that people may be interested in : https://connect.mayoclinic.org/group/cancer-managing-symptoms/

For example see these discussions:
- Emotional health after cancer
- Anxiety due to Cancer
- Life after a cancer diagnosis
- Coping with anxiety while waiting

So sorry to hear about your mom's struggles. I also had an itchy head, although that seems to be doing better. The restless/anxiety feeling is so uncomfortable and inconsistent. I am interested in learning if others have experienced these "withdrawal" symptoms after going of aromatase inhibitors. Perhaps, oncologists should advise patients to withdraw slowly, not all at once. Particularly, when one has been on the drug for many years. Those of us that have been on these drugs for 10 years are pioneers, as the period of time and recommendations have evolved over the last few years. Thoughts?

I am looking for more clinical and specific information about "withdrawal" symptoms after stopping Arimidex or other aromatase inhibitors? Can not find anything in the literature - any guidance or input would be appreciated. Thanks!

@rsc After I stopped the anastrozole, I did have a lot of itching and more intense bone pain. That also happened following stopping letrozole. On both of those, I was off about 1 month. So far, so good with the exemestane - there are some side effects, although for me they are not anywhere as bad as the prior two.

@rsc
I'm not coming up with anything either, except anecdotal information from various comment groups. I did read that letrozole's half-life is two days, and that it should be out of your system in 4 days. However, that says nothing about how long it will take a body to adjust to its (or any AI's) absence, especially after 5-10 years. My guess is that no one has studied the subject... regrettably.

Thanks for your response! I am sure as more women go off AI after 10+ years there will be more data as to the “withdrawal”. Adverse events after finishing a drug - who monitors that? FDA?

Just completed 10 years, and quit 12 days ago, a little fatigue but my doc said to please call him in one month and report as long as there is no major issues. The bone pain I have endured for 10 years is moderate most days, but not enough to make me quit. I am hoping this will all subside soon.