Hi

I have found this thread so helpful. I had breast cancer in 2013 and have been on tamoxifen for 9 years. I have had no side effects until recently when I have had unbelievable joint pain. My GP said I had been through the menopause (I'm 45) but can't give me anything due to my cancer type. I've eventually six months later just been referred back to oncology.  He said I may not have been through the menopause - so very confusing and said it could be the tamoxifen. He said as it'sbeen 9 years I can come off it but obviously this worries me. I didn't know this was even a side effect. However reading these posts it could be the problem. I think I'm going to try coming of it for a few weeks, he gave me this option and see how I feel. He has also said I could have Anastrozole instead but it has other side effects. I just can't carry on in this much pain. Thanks for sll your helpful stories. 

Hi. I too am a survivor of bc (surgery 04/08/20 )which had also spread toy lymph nodes under my arm. It was also er and pr positive. I had a lumpocetomy ,chemo , radiation therapy and then put on examastin.   Like you all it was OK at the beginning then I started having the joint and muscle pain so much so that I even had to leave my nieces wedding as I could hardly walk for the pain in my left knee. I also had xrays done of my wrists as well as I had pain just below the thumbs. 

Anyhow oncology doc gave me a 6 week break to see how it was, nothing changed was still having the pains .so he said he would start me on a new one. Tamoxifen. 

Well. Here I am now  with both knees causing excruciating pain that I'm attending physio for them which the physio told me was also coming from my back and hips.   He did say that I had some damage to my knee caps and loss of muscle above them.  Even yesterday sister made a comment that my legs are skinny now considering I used to have fat legs. I might add I still have swollen ankles 24/7. 

I don't know if I should ask if I can try another drug as this is the second one and it's caused the same pain. 

Also at the moment I am undergoing tests to see why I have lost so much weight without trying. Which was  started by my chemo nurse noting that from my previous bone strengthener infusion I had lost 10kg. So she called my gp to organise tests which my gp questioned why as it should have been done by the oncology department as I am still in the first 5 years of diagnoses. 

 Sorry just everything is coming out as I type this reply.  Last night was a bad one. The cramps in my ankle and u]p my shin was unbearable each time I managed to fall asleep it woke me back up. 

It's good to know I'm not just being a hypercondriac

 That it is real and that u all know exactly what I'm talking about. No-one who has not gone through it doesn't understand how bad it feels.   As people have said  , I feel old. I'm 51 but feel like 88

Hello

Thanks for the reply. Of course you are not a hypochondriac, I hope you are feeling better than when you wrote this.

I have an update. I did come off the tamoxifen but it made no difference so I have gone back on it.  The oncologist has decided I haven't been through the menopause so it's not that.  I've had every scan going which all came back clear which is great however still no idea what it is.  I've been to the rheumatologist and he's sent me for another scan tomorrow.  The pain goes on.  
 

Ladies 

hello sorry to jump on thread I have been on tamoxifen for 8 months had no effects really only on the last week or so out of no where got a agonising knee pain haven't fallen tripped or strained it do you think this could be tamoxifen after reading your posts I can see this can happen .

love Lara ️

I had the same effect from Letrozole which meant I could not rise to the trot when horse - riding so my oncologist changed it to Exemestane .  I still get some overall stiffness which I can tolerate.  I think all estro - antagonists cause similar problems.

Ladies hope you are well 

I no this is a old thread , I’m month 10 of tamoxifen and now finding the joint pain bad knees are the worst 

can you give me any tips on how you managed 

love Lara x 

Ladies hope you are well 

I no this is a old thread , I’m month 10 of tamoxifen and now finding the joint pain bad knees are the worst 

can you give me any tips on how you managed 

love Lara x