Hi I was diagnosed with BC October 2014 with muicnous carinorma and high level DCiS been on tamoxifen since Jan 2015 and my joint issues started as soon as I began tamoxifen I’m amazed at the speed of the side effects I felt I was going mad my shoulders and neck I had to push for MRI scan which has shown arthritic and oestoarthirtic changes in shoulders and neck It is depressing and yes I’m grateful to be alive but the quality of life at 48 after a life of being active pre cancer is a distant memory I’m frightened for the future and mobility issues

if I was given the option to pay towards the patent tamoxifen I’d do it if it meant not joint pain these generic meds compromise quality of life which I think is unfair

I hope to see my consultant soon who will deny any side effects with tamoxifen

Hi ya and thanks for this thread ... as I've been on tamoxifen for couple months ... as I have numerous bone prob I'm not sure I'd notice about bone pain as had pain for years ...

I thought I was side effect clear and was merrily going on ... but on my son's birthday just had to go home crying ... sobbing. . Ruined his day , bless him ... then next day cried all day on thought of being so emotional ... that's really not me ... good cry and jump back in the saddle and move on ... then I realised I'd been slowly emotional over everything ...

We've a lot of health stuff in family at the mo ... the hardest is my big little sis who's dementure is going downhill fast ... but I'd always coped before ... even adverts where making me so upset ... realised could be tamoxifen and went back on my mild anti depressant , dulsilupin .. and they evened out, I'm now back on traco and reduced the dulsi, to couple a day ... 

Just wondered if anyone else had that with tamoxifen etc ... just glad l realised in time ... Chrissie xx

Hi Chrissie,

I cried buckets of tears when I was taking Tamoxifen. My joints have certainly been worse since I changed to Letrozole after the first year, although it’s hard to tell whether this is because time is marching on or it is due to the Letrozole. I have had both knees replaced since I started on Letrozole and the worst of the two is now causing trouble again in only 2 years after surgery.

It is not just the joints that are sore, but the very bones themselves. I have regular bone scans and am told that my bones are fine, but it certainly doesn’t feel like they are. I stopped taking Letrozole last July after taking it for 6 years, but the joints are still as sore as ever.

Has anyone experienced improvement in pain after stopping hormone treatments , or are they here to stay?

I'm glad to hear that you find that the dulsilupin has helped you cope with the side-effects and hope that it continues to do so.

Kind regards,

Jolamine xx

Thanks jolomine ... That's why l didn't go on letrozol coz I'd read all about joints and bone weakness . . And as I've got so many probs with bones ,,. Thought I'd plump for tamoxifen as lesser of two evils so to speak .. . Just didn't account for all that emotion . . 

So thanks for info ... Much appreciated . . Should av asked you earlier . . X ,

Hello,

im 4 years post treatment for breast cancer. I had a mastectomy and reconstruction with reduction of my “ normal “ breast. I have been taking tamoxifen since chemo finished and am seriously considering finishing it. My entire body aches I have a terrible burning itching down my right arm that is driving me to distraction and only started since I started taking Tamoxefen .Has anyone else experienced this my arm gets hotter and hotter I’ve been backwards and forwards to my gp consultant dermatologist pain clinic but as they don’t know what it is they dismiss me. It’s affecting my life so much I am 53 and having survived breast cancer I thought I was lucky but these symptoms are ruining the quality of my everyday and night activities I can’t sleep and I ache all the time. I feel like I’m going mad xx please advise if you have same xx

Hi Ada,

I am so sorry to hear about your experience of Tamoxifen. I have had 2 bouts of breast cancer and, have taken Tamoxifen and Letrozole.

I cried buckets of tears when I was taking Tamoxifen. My joints have certainly been worse since I changed to Letrozole after the first year, although it’s hard to tell whether this is because time is marching on, or it is due to the Letrozole. I have had both knees replaced since I started on Letrozole and the worst of the two is now causing trouble again only 2 years after surgery.

It is not just the joints that are sore, but the very bones themselves. I have regular bone scans and am told that my bones are fine, but it certainly doesn’t feel like they are. I stopped taking Letrozole in July 2017, after taking it for 6 years, but the joints are still as sore as ever.

Has anyone experienced improvement in pain after stopping hormone treatments, or are they here to stay?

Kind regards,

Jolamine xx

Hi,year 4 on tamoxifen,yes im overweight seems to be going on even though im active and walk.

Been to doc saying pain in shins,ankles feet,cramps come in calf and thigh..never had cramp in thigh..

Doc says tamoxifen says muscles not bones..

My wrists hurt,my teeth even hurt at times..

A year to go..but its the balancing act,if i stop and cancer came back i couldnt forgive myself but if i carry on for the year,what state am i going to be in this time next year and can it be reversed?

Well looking back on this thread has made me so happy with the decision I have taken. I have been off tamoxifen for a month now and I can say my quality of life has improved. You must agree and consult with your consultant before taking this step. Believe me I pondered for months but am happy with my decision. I am back at consultant in July so let's see where I go from there. I still have side effects but much less severe. My risk came out at 32% of reoccurrence if not taking tamoxifen and to me that is low weighed up against quality of life. I am also 52 and having survived cancer I felt the same. My knee is much worse but I am in process of having that treated. Guess I was one of the lucky ones that I didn't put on weight in excess. A bit on the tummy but am also strict on diet with odd treat. Do what you feel is right as none of us will react the same to any part of cancer and treatment. Take it easy and I hope you all feel better.