Recovery time after Anastrozole/aromatase inhibitors

I have the same question for anyone who has gone off Anastrozole. I was on it for 5 months without a side effect and the in 1 week my muscle in my shoulders hurt to the point it’s difficult to take off a tee shirt. My fingers do not bend until I force them. I’ve stopped taking Anastrozole for 2 weeks and still have the same pain.
My blood pressure is 158 over 80 which is higher then I’ve had. Normal for me is 107 over 66.
Please looking for any guidance.

I was on for 10 months before oncologist was nice enough to say “you shouldn’t have to live in pain” and took me off. Was off for about 5 weeks before started exemestane. Took 3-4 weeks of that to really feel good again.

Interesting to hear these comments. This drug seems to behave so unpredictably for some people i.e. sudden emergence of severe symptoms out of the blue many months after commencement of treatment. This was my experience too. Took a four week break on oncologist advice - began again and still really debilitating pain. I have read worrying accounts of people still not ‘losing’ symptoms when discontinuing after five year treatment. Will be interested to see see future comments on this thread.

I, Karla, was on several AI drugs following my mastectomy at age 75. Started losing use of my hands to the point that I was exploring alternative ways to handle personal hygiene and how to even be able to brush my teeth. Had trigger finger surgery and wore wrist and finger splints to try to keep from waking up in severe pain. Finally just quit and after a month told my oncologist. It's been 9 months and am slowly regaining use of hands. Can now brush my teeth and even snap my bra in back, among other things. Now 78 and on tamoxifen following my one-month suspension of Anastrazole. So far so good though having a lot of trouble getting to sleep. A good night's sleep is 5-6 hours but often 4-5 and rarely over 6 even though I am in bed 9-10 hours or more. Even tried taking half of a marijuana gummy but sleep still eludes me which I'm sure accounts for much of my fatigue. Every person responds differently. On the other hand, so much is happening in cancer treatment we may be on the cusp of something phenomenal and this will all be a bad dream. Praying for all of us meantime.

Hi Karla, thank you for sharing your experience. 9 months is such a long time, you have great courage and strength. I am so happy to hear you are finally feeling better. Your story gives me hope. I hope the Tamoxifen continues to be ok, minus the insomnia. I appreciate you reporting that you eventually got better.

This has been so helpful to read chats and experiences. I was diagnosed at 69 and did 5 years on anastrazole. I am 1 month off the medication. I asked a lot of questions over those 5 years and learned a lot if this helps anyone. Yes symptoms can occur at any point and that is why my oncologist would ask at every appointment if any new side effects appeared. It is because this medication has somewhat of a cumulative effect. The longer you block estrogen the more it can impact you. I had initial muscles cramps but they went away. I think largely because I pushed myself to exercise and strength training. I had joint stiffness but thought it was from lifting weights. Now that I am off anastrazole for 1 month the stiffness is reduced. But I am far from full recovery. My most serious side effect was lack of sleep no matter what sleep aids I tried. I am slowly sleeping better but still have a lot of fatigue. I have a higher creatinine on the drug and while I maintained my weight ok for 4.5 years the last 5 months I gained weight despite a good diet, exercise and barely eating candy. The metabolic impact is frustrating and makes no sense to me.
I am told now that it can take 3-9 months for your body to recover. So I am trying to be grateful research and these meds have improved survival rates so significantly and that i am alive. I think in general not enough information is given about how women recover from hormone blocker. I could have prepared better mentally.