How long the side effects can last?

Zan

Dear Ladies, can anyone share their experiences or insights on the duration of side effects after discontinuing aromatase inhibitors? It has been over a month since I stopped taking Anastrozole, yet I'm still experiencing side effects.

cranky_granny

@Zan hopefully theres somebody on here that can help you. It will be interesting to see their answers. 

Tri

Hi @zan I am the same as you - except the AI that I stopped taking (due to a couple of long flights) is/was Letrozole.
Improvements I have been aware of:
*ankles don’t ache at the end of the day even though my daily step count has been much higher 
*a bit more stamina 

*skin has a bit more glow 
In a couple of weeks I will do a cholesterol test and I am curious to find out if stopping the AI resulted in my cholesterol reducing a bit (or not)

I’ll expect I will restart the AI as I want to do what I can to reduce the risk of a breast cancer recurrence. 

Not sure if I will go back onto Letrozole or try a different brand; my oncologist will probably guide me about this. 

Zan

Hi@Tri, I discontinued Anastrozole after seven years on my oncologist's advice, who indicated that extending the treatment to ten years wouldn't alter the recurrence risk for my type of cancer. Since stopping, I've noticed no change in the side effects from Anastrozole. I'm considering resuming it to minimize the chance of recurrence.

FionaM

Hi Zan,

I started on Zoladex/Anastrazole in early 2022. Side effects were not great (menopause on steroids, insomnia, tendon pain, carpal tunnel, brain fog from chemo worsened, and significant impact on mental health). I went off the Anastrazole in Dec 2022, and found that the mental health issues cleared up in about 2 weeks. The other stuff stayed. I went on Letrozole then, and there was a gradual spiral down (ie worsening) of the side effects again. I had a dummy spit mid 2024, and went off the lot. It took a few weeks for the the mental health symptoms to settle down, and a few months for me to re-establish a sleep routine of sorts. Hot flushes and fatigue/brain fade are still with me - can't blame that on the AI's now I guess!

It's a difficult space to make any decisions in - the risk of recurrence vs the side effects - not easy to weigh up.

Good luck!

Zan

Hi Fiona,                                                                                                                                                                                                thank you for mentioning about taking your Al and side effects of taking your Al thoroughly. You are right; the risk of recurrence vs the side effects are not easy to weigh up. In my case it's really very confusing. The risk of recurrence is very low, and my doctor has suggested I can stop taking Al, but the issue is that when I had stop taking it, unfortunately, the side effects were still with me. So, I have started taking it again.                                                                                                                                                                             Life is not that easy. "Sending you lots of hugs & love".                                                                                                                                             

Tri

Hi @Zan just an update- I started taking my AI (Letrozole) again a couple of months ago. I know these affect everyone differently and I feel grateful that I feel pretty good now with good stamina and energy.  I still get the occasional ankle aches in the evening it’s mild compared to others experiencing a tougher suite of side effects.  

Sending you best wishes 🌸🌻 I really hope you can get some relief.