Exemestane Pain

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I was diagnosed with BC in October 2022. Grade 2, I had a lumpectomy & lymph node removal, thankfully lymph nodes all clear.

After treatment I was placed on Letrozol, that did not work for me. I was then placed on Tamoxifen, this gave me terrible pelvic pain and a thickness of the lining of the womb. I was then put on Exemestane, I have been on this for about four months or so and have terrible bone pain in my shins. And my fingers are just so painful, worse when I close my fists. The pain is so much worse at night when I’m trying to sleep.

I am seriously thinking of stopping it as my quality of life is nil at the moment. Has anyone else had similar symptoms.

  • Hi Valleyside ,  I have been on Exemastane for 11 months now and not had any of the side effects that you describe.  Could these be caused by another medication?  Quality of life is very important but I would talk it over with your oncologist first.  

  • To Valleyside

    After being on Letrozole, I was on exemestane until a couple of months ago, when I came to my 5-year finish.  I found it difficult but not as bad as for you. After 4 years, very overweight and with very much worse osteoarthritis, I was referred back to my oncologist, who suggested trying different brands, but this can be more difficult than you think, and as I was prescribed the original brand, Aromasin, I decided to stay with it. I did aqua aerobics 5 times a week, and I found that helped. Before you give up entirely, ask for a break of say 2-3 months, and this will give you a chance to see if they are the cause. I say this because after 2 months free of the anti-hormone medication, I have not noticed a great change in stiffness, although my case is clouded by me having a foot operation that has left me immobile for 2-3 months. But a break would give the chance to make a more informed choice.

    You could also look at the predict site. I don't have the details to hand, but it has been mentioned on this chat line before.  Good luck and I wish you well x

  • Hi all, I have been taking exemestane for almost 2 years having previously been switched from anastrosol which I was on for a year.  They both seem to give me joint pains after a while, could be due to different brands, but difficult to say.  I am really struggling at the moment with wrist and finger pains, plus one knee and now developed pain in my upper arm.  I am supposed to be on these for 10 years, not sure I can carry on much longer as I am finding them so debilitating.  Does anyone recommend taking a break for a while?  Bit worried about stopping them altogether.