Hi Michelle

Gosh, I feel I could have written your post - exactly the same.  I started on anastrozol but couldn't cope with the joint pain so was moved to tomoxifen. Joint pain is still there though not quite so debilitating but the hot flushes are getting to me so much.  Also, I read that weight gain is a problem and I really need to lose weight as I have developed a heart problem.   

I think ill contact the Oncologist and see what she can suggest.  I just want some normality back.

Sue

I have been on tamoxifen for 6 years. I had aches and pains at the start until I found the Teva brand recommended by someone else and then never had any side affects. Sadly I can't get the brand anymore and my aches and pains are back with a vengeance with the different brand I now have, to the point I don't think I will carry on. Convincing your doctor it's the brand that's at fault is difficult but I've heard it so many times and we know our bodies. 

I thought it was just me! Fingers, wrists, hip, left foot!!! I get up out of a seat like an old old lady!!! I've been taking Tamoxifen for 8 months now to counter a recurrence of ovarian cancer (who knew?!) and because it has had the desired effect of calming everything down, I've kept my mouth shut about the side effects. But my darling husband now thinks it's time to talk. I'll mention it to my onc at next appointment and let you know what he thinks. Have a great day, everyone!

Kath1961i had a lumpectomy and 3 lympnods removers beginning of November and  i started taking tamoxifen in November I started with pains everywhere the pain black as to be the worst atm  I do get pains in my feet . Hands . Calf's but the back pain is something else I take tablets got. Vitamin d deficiency so I hoping the pain will subside 

Hi Michelle, I had same treatment and was also prescribed tamoxifen. It's really affecting me and I really am considering coming off it. Just wondering if you came off it and if you were given an alternative. I work with children so I'm bending down a lot and it really is a struggle.

Hi Suziewong,

Have a chat with your oncologist about alternatives and see what s/he says. There are a few alternatives, but all come with their own set of side-effects. I moved on to Letrozole from Tamoxifen, but found this harder on my joints. However, it was better for my emotional state.

Please don't just stop, talk to your care team first. You could always phone up your breast care nurse to discuss this.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Lindy Lou and all fellow survivors 

I had same as you back in September 2015 I'm into my 6th year on tamoxifen and main side effects are the hot flushes and worse joint pain all over!!! I don't sleep much due to tossing and turning and having to stretch in agony!

I did have a break for a few months but was advised by my consultant to go back on it as my flushes were still much trouble. The joint pain is still not good from my shoulders to my feet all over!! I have my consultant calling me tomorrow for a review since going back on it so will ask what they could suggest I try. I'm also wondering how my bones are now effected and could I have arthritis? it's hard I know what to think as we are governed by the specialists aren't we. I have tried all the drugs like tamoxifen and meds to help with flushes but nothing has worked to date. Unfortunately like I always hear what works for one doesn't for someone else. I'm just so glad I'm still alive like millions of others including you, so good luck, speak to your experts who look after you and be kind to yourself. Take care xx

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