Anyone stop taking Aimidex years ago - how did it go?

katiegrey

I have been on Arimidex (anastrozole) for about two years and the crushing pain in my legs, hips and feet continues, and may even be getting worse. I can't get through a day without crying because of the pain. I've seen physical therapists, pain management doctors, rheumatologists and continue to take supplements like vitamin D, calcium, fish oil, turmeric and Celebrex (usually prescribed for arthritis, which I don't have). I've taken up to 16 Advil a day. I've been prescribed nearly every type of narcotic and nothing has even touched the pain. I have an appointment with my oncologist tomorrow and plan to tell her I'm going to stop taking it. She will try to talk me out of quitting - she always does. But my quality of life sucks. Has anyone out there stopped taking this drug in the early years, and how did you do? Did the pain go away? Did you ever have a recurrence? Any success stories? Anything? Please help.

Meow13

I stopped at 1.5 years, pain was bad. I took exemestane for a little over 2 years and stopped. I never tried letrozole doctor didn't recommended it either. I am 5 years out no recurrence. I had a high oncodx but did not do chemo. I feel alot better now on no medication. Why doesn't your doctor try a different hormone drug? If AI drugs are causing too much distress you could entertain taking tamoxifen.

Hopeful56

I was on arimidex for about 2 1/2 years with the debilitating pain you described above. I was afraid I had bone mets. My oncologist switched me to exemestane and the pain is so much better. I've been on exemestane for 2 1/2 years and the plan is for me to continue on it.

katiegrey

Thanks Meow and Hopeful - my oncologist has actually prescribed another AI (Aromasin) and tamoxifen and I had side effects that were just as bad. I just think I'm unlucky when it comes to any kind of hormone therapy. Meow, I'm so glad to hear that you've been able to thrive without the drugs. It gives me hope. My best to both of you.

dtad

Just want to add that I refused anti hormone therapy and so far so good. I have done things to lower my estrogen naturally. Good luck to all navigating this disease and Happy New Year!