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I started with Anastrazole. While not incapacitated, I did experience quite a bit of bone and joint pain. Just general every day but also the moving areas of acute pain like being stabbed. Today the left ankle, tomorrow right hip etc. After 9 months tried exemestane. Not really pain, a little achy but easily walk it out. My problem ther started at month 3 - weight gain (10# in 1 week!), then extreme fatigue, pain and joint swelling in hands but not quite to the trigger finger, weakness then insomnia - barely getting 3 hours of sleep a day. Accompanying that, increase in bp and heart rate - couldn’t even do a mile without hr up into the 170s. 1 month vacay (I actually took 6 weeks) and 80% better. He wanted me to try it again at same dose - won’t do every other day because it’s not standard of care. Everything restarted within 2 weeks. So took another 2 weeks off and I’ve now been on Letrozole for 1 week today. Kind of scared because I’ve read that Letrozole is like Anastrazole on steroids but will give it a go. If this doesn’t work, we try tamoxifen. So yes, it’s worth trying something else and exemestane works differently so you may do well with it.
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@mistymar Thank you for sharing your experience. I sincerely wish you all the best.
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@mistymar
Thanks for the advice and in particular thanks for sharing your experience. with degree and quality of pain. I was struck when you wrote "Just general every day [bone and joint pain] but also the moving areas of acute pain like being stabbed." The extent of the acute pain I have experienced on AI (letrazole to date) has been striking and your description reminded me of my own experience. The pain is not in any ways similar to the sensation of MSK pain I have experienced in the past pre letrazole. When I move some areas it feels like what I can only describe as biting pain- not aching, not sore, not strained or overused. In fact certain movements amke me cry out in pain. I have been off letrazole since the end of May ( three months on it) . since then had 16 sessions radiation. Had to take naproxen/ppi vimovo to be able to hold arms in proper position for radiation . Of course raised blood BP as did letrazole. Sleep disturbance acute as well. I am now planning on exploring the role of pre-existing fibromyalgia in CONJUNCTION with breast cancer treatment as an explanation for the persistent acute long term and QOL threatening symptoms. Previous Fibro was not particularly disrupting.