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

Laurie, I wish the mayo clinic could do something about these pills that have such horrible side effects for women. I was on anastrozole for six months and had to go off of it. I could no longer play golf due to the pain in my hands at the trigger finger thumb and my baby fingers. Joint aches fatigue. I am 72 have always had a very active lifestyle and never was sick. A cold or the flu once in a while in my life. Breast cancer, invasive carcinoma my life has changed. I went off of the pill waiting to see the doctor to figure something else out. I can’t live like this . We need your help.

@doesitforme02

Welcome to Mayo Connect, this is great group to get support and find women who have similar experiences.

Your dealing with what many women struggle with, side effects vs risk of a medication. In your case risk , you are at higher than many because of BCRA gene.

Have you discusses the side effects with your provider? Ask about using an anti-inflammatory medications (such as aspirin or ibuprofen), acupuncture to ease the pain or in your case a sleep medication.

Hope you find relief, it is hard to function without a good night sleep.

In 2022, I was identified as BRCA1. My family has had a history of breast cancer on my maternal side. My mother passed away with Ovarian Cancer. I had my ovaries removed and there was no cancer. It's going on two years with Anastrozole. All Mammograms and MRI's good. Now I experience sleepless nights. I saw a blog where a woman stated that when she was taken off this medicine eventually, she had a good night of sleep after a couple of days. I am looking forward to that. As a result of taking this medication, I now have to take FOSAMAX. This medication and the Anastrozole causes alot of pain throughout your body. I am a very active person, but I do get tired. I think when I get home from our business that I will sleep tight, Nada...I squirrel away in an extra room to deal with the side effects. It would be nice to wake up next to my husband in the morning.

Curious as I seem to have the same knee symptoms. Have been off Anastrozole for two weeks. No resolution of knee stiffness. Very hard to get up or down, go up stairs etc. I do take biotin and have collagen. I will have to try to take it more regularly to see if it will resolve. My oncologist is going to switch me to letrozole after another two week break.
I hope you keep these symptoms at bay.

I was feeling similarly after a year on Anastrozole. My knees had me almost crippled. I switched to Letrozole and at the same time began taking collagen supplements. It was hard to tell which was responsible for my knees returning to normal until I accidentally bought a biotin supplement which did not include collagen. My knees began to ache, I realized my mistake and got back on the collagen and am almost to the end of my five years of AIs. I have some knee issues, but they are definitely arthritis related. I use collagen capsules for convenience but I've successfully used gummies and powder. I'm 69.

My oncologist took me off anastrazole after 5 years. She did not say to taper off so I just quit. Have been feeling internal tremors, hot flashes, mood swings. Is this normal? I expected to feel better after quitting that miserable drug, not worse.

thank you! I will inquire with my MD. Appreciate the info.

Yes - it took a few weeks, like maybe 12 weeks - but the horrible joint pain resolved. On exemestane it was at about a 7 all the time, mostly in my hands, shoulders and toes. My Oncologist made me go to an arthritis doctor to verify it was not that causing the pain. It was not arthritis. It calmed down to about a 1 or 0 after 3 months or so. I understand for some people it does not resolve, but I would then ask your doctor to try another drug. I think there are 5 drugs in total that are in the AI category. The younger people (premenopausal) usually get put on tamoxifen. Honestly I can say if the pain had not gotten considerably better - I'd have gone back & asked for something different. I was 62 when I started on the meds. I read that something like 40% of ladies with severe side effects quit taking the drug before the full 5 years. Good luck to you!

I was on Anastrozole for a year before switching to Exemestane due to finger stiffness. The stiffness is getting a lot better but the joint pain doesn't go away. The achiness of the feet is coming back but not so bad. The joint pain does go away after a few minutes of stretching. I'm still doing my regular exercise (running, swimming etc.) I'm taking turmeric but it doesn't seem to help much. I guess we just have to learn to live with ache and pain until we can't tolerate any longer. I'm 62 and feel like 70! Wish you all the best. Hugs.

Kathy- wondering about your switch from anastrozole to Exemestane. I am 1 year in on anastrozole and while I *might( be sleeping a tad better my joints/tendons orthopedic issues are off the chart. Hobbling like an old lady when I get up from sitting/bed/static position and I seem to be falling apart. I am 56 and is (was) very active in gym, HIIT classes, long hiking etc and now just can't tolerate:-(

Did the switch help in that way?