I tried letrozole for 4 months and found the side effects intolerable . Have now started exemestane but side effects are the same . I’m trying one every other day now . Has anyone found anything that counteracts the side effects ? My joints are so sore, I ache all over and my skin hurts . Afraid to stop incase the inevitable happens
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Yes. Take 1500mg capsules of glucosamine a day. I take an expensive one though u can get one from Boots though I don’t personally think it’s as good. Don’t give up and good luck! Hx
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I’m on exemestane as well and have joint and muscle pain, and fatigue. My doctor has me now doing 6 months on and 2 months off. I go back on it tomorrow and dreading it. I wish there were better options.
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how are you getting on now? I swapped Letrozol for exemestane and I found that taking them at night before i sleep helped me greatly. A nutristionist recommended Magnesium too. I feel ok but have recently started getting slight head tremors which is worrying me. I would be keen to know how you are getting on.
I gave up and now don’t take anything . I feel exposed to recurrence but I just couldn’t
I am in a similar situation. After a year on Letrozole I am incapacitated with painful peripheral neuropathy which has affected my walking ability and given me four trigger fingers and a numb thumb. I am scheduled to have a hand x-ray on both hands and am being referred to the orthopaedic and physiotherapy departments at my local hospital. In addition, I am now having to take gabapentin for awful nerve pain. At present I am on a 12 week break from this drug but I shall inform my breast team that I have no intention to return to a drug which has caused havoc with my system.
Of course I think about possible recurrence but in the meantime my focus is trying to cope with every day living.
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I’ve been thinking about this and wondering how on earth manufacturers and NICE get away with saying these drugs are “generally well tolerated”? Is there something awry in the reporting process for side effects?
I am in a lot of pain and it’s reducing my ability to do the things I want to do. I’m young and I’m a very active person, but this drug floors me. The response of my GP was to send me for CBT - “acceptance therapy”. I don’t want to accept it. I want a better drug!!!
Whatever you do, make sure they listen to your side effects and take note. They really do need to be pushing NICE harder on approving and funding alternatives and on taking side effects seriously.
All the best,
BP
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