Aromatase inhibitor side effects (Recap of Lost Posts, Topic Created by Tamlen on Jan 08, 2019)

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

Tamlen

Jan 08, 2019 - 1:04 pm

Hello -

My gyn onc put me on anastrozole (Arimidex) in October. The side effects I initially experienced were some relatively minor fatigue, some cognitive impact, and some bone and muscle pain. Lately, the pain has begun to get a lot worse, to the point that I can't sleep uninterrupted and it's interfering with my day. It's in my major joints and the long bones of my arms and legs. I would call it a consistent 5, with occasional spikes to 7 or 8, on the 10-point pain scale. I am allergic to opioids and opiates (not that I want to take them anyway). NSAIDS and CBD oil don't do a thing for me. I don't have mets to bone, etc (just lungs, and chemo did a nice job on those).

I also feel the cognitive side effects are getting worse. I'm searching for words a lot now, worse than chemo brain was for me. I feel like I'm trying to think through mud some days. Before all of this, I had a mind like a steel trap and I'm really missing that and feeling pretty frustrated that at 56 I am cognitively debilitated. I recently came across this in the research literature, explaining why that might be: Confronting the Side Effects of Aromatase Inhibitors.

If you're on anastrozole or letrozole and have had these kinds of side effects, can you tell me how you've managed them well enough to continue on the drug? I know my onc can try switching me to letrozole or take me off the AI completely, but for now, I'm interested in hearing from those of you who've grappled with one or more of these AI side effects.

Thanks!

 

Lulu7582

Jan 08, 2019 - 2:42 pm

Letrozole

Good morning Tamlen,

Sorry to hear of your side effects. The joys of being on medication ....benefits vs risk! My experience with Letrozole has been good although I do take claritin to help with any bone pain and it keeps things quiet. Not sure why it works but it does. Haven't had any issues with cognitive side effects so far. Interestingly my girl friend who had breast cancer started Letrozole and she had terrible bone pain to the point she could hardly walk so it shows how each of us are so different and our response very unique. 

I think if the pain is not managable and the cognitive side effects are affecting your quality of life, talk to your doc about switching to one of the others and try that. Like I said each of us are individual and unqiue and just have to find the med that works for us. Hope that helps. xoxo

 

Tamlen

Jan 08, 2019 - 4:25 pm

Claritin

Thanks, Lulu. I have been taking Claritin. I usually take it for seasonal allergies and stop taking it at the start of November. When I tried that this year, I started to itch all over -- like an allergic reaction. The only other thing I'm taking is Arimidex, so I started to worry that the Claritin has been preventing a reaction to the Arimidex. That's on the list of things to go over with my onc on Friday.