Hi 👋 I have been on Tamoxofin for just over a month and I’ve started experiencing really sore wrists to start and now pretty much all joints. It’s worse when I do body weight workouts, I feel like it’s all over and even lying on my side during exercise, it’s like a “bruised” feeling. I know it’s early days and an expected side effect but I’m just wondering if anyone who has been on Tamoxofin for a longer period has any tips on how to combat this?

Hi lovely ladies!!! I had a very long day at work and when I checked just now was delighted to receive so many responses, feel so supported! Thank you one and all!

Hi @Nina75,I have been on tamoxifen for just over 12 months now. All the side effects I experienced initially seem to have settled except fatigue off and on. I experienced the side effects for a few months. Fingers crossed it settles for you too. I had the choice of tamoxifen or other AIs but tamoxifen had less joint pain associated with it so hence my choice with tamoxifen. I didn't want the joint pain because I love walking. You can always discuss with your oncologist or breast care nurse if it all gets too much. Best wishes 💐

@arpie just wanted to mention while tamoxifen is usually given to women who are pre menopause, it is also given to women who are post menopause too, if just depends on one's pathology and other medical conditions they have. For me I was post menopause but had other conditions with joints (some arthritis) so this was a best option so not to increase any joint issues for me. Tamoxifen doesn't cause the same joint pain as the other AIs are known for.

@Nina75 I spent about 2-3 months waking up every morning convinced I’d just had a nightmare. Then realising it was true and wishing it had been a nightmare. And one of the hardest things about all this is exactly that: the realisation that we’re alone. No matter how much wonderful support you have, YOU are the one having to go through the rigmarole. When we enter the theatre, we go alone. The radiation room, alone. The chemo chair, alone. When I say alone, I mean we’re the ones all this is being done to. And that’s when we realise we really are alone in this world. Anything that happens to us in life, happens to US. Our friends and family can be there for support, but no one feels it like we do. I think this was one of the hardest parts of this breast ca diagnosis for me. It does take time to process, but once you do it makes a world of difference. Dealing with the psychological aspect of this diagnosis has helped me find myself, and now I don’t feel alone anymore. I could be by myself for days, and I wouldn’t feel alone. I also trust my body. I know I have my own back. Everyone else is a bonus. Almost two years later, I’m pretty much over it and feeling a million times better. However, when I visit places that remind me of that time right after diagnosis, I still feel like crying because I’m reminded of how alone I felt, and that was the worst part. I guess healing really does take time and patience. You’ll get there ♥️.

I'm on letrozole and I'm struggling with knee and ankle pain. Makes walking and bending down hard and painful. Feel like I've aged 25 years.

Advice for aching wrists, joints | BCNA Online Network

18 Replies

Nina75
Member
4 years ago
Thank u so much @kabee !!
Kabee
Member
4 years ago
Hi @Nina75. I know you’ve only been on the meds a mth but it might be worth looking into a different brand of the tamoxifen down the track to see if that helps.
I’m on my 4th mth of a different med but the first 3 mths I had 3 different brands due to supply issues in my area (not helpful when I wanted to monitor side affects)
The first brand seemed to alleviate most of the joint pain I had from the Zoladex injections, possibly a coincidence but I was happy to feel better than I had before. The second wasn’t too bad either.
But the third brand was horrific! I was in absolute agony with my hand and wrist on my BC side. I’d wake up in the mornings and couldn’t close my fist. I’d have to open and close my hand till I could make a fist. I could barely hold my bedroom door handle to open the door. My wrist during the day felt fractured and my fingers felt broken. I couldn’t lift my kettle at home or work. I could only just hold my coffee cup with the support of my other hand and could barely hold a pen unless it was on an awkward angle and half hanging off my desk. And I was waking multiple times during the night with severe hand and wrist pain.
When I had to fill my script this mth I told them I couldn’t have that brand again and luckily they had one of the other ones in stock. I’ve only been off the horrible brand a week but I already feel like my hand is brand new again. My hand is slightly stiff in the morning but I think this is my new normal since chemo, Zoladex and being put into early menopause. I can now hold my kettle, confidently hold my coffe cup with one hand and I can hold my pen now too.
Maybe a different brand of tamoxifen might help with your aches and pains. All the best with it 😊
Kabee
Member
4 years ago
Hi @Nina75. I know you’ve only been on the meds for a month but it might be worth trying a different brand of Tamoxifen down the track to see if this helps.
I’ve just started my 4th mth of Exemestane. The first 3 mths I had three different brands due to supply issues (not ideal when you want to try and keep an eye on side affects)
The first brand seemed to alleviate some of the joint pain I had from the Zoladex injections, possibly a coincidence but I was happy it subsided. Second brand was about the same.
The third brand was horrific! I had really bad pain in my fingers and wrist. Each morning I could barely close my fist. I had to open and close my hand until I could keep my fist closed. During the day my wrist felt fractured and fingers felt broken. I couldn’t pick up the kettle at home or work. I could barely lift my coffee cup without support from my other hand and I couldn’t grip a pen properly unless I held it on a weird angle and half off my desk.
When I had to fill my script for this mth I told them I couldn’t take the previous brand due to the horrific pain, luckily they had a different brand. I’ve been on this one for a week now and my hand and wrist feels almost brand new again. I still have some slight stiffness in my hand when I wake up but this is my new normal (I had this even before I started the meds) which I put down to chemo, nodes removal and being thrown into early menopause. I can now hold the kettle, confidently hold my coffee cup and can hold a pen properly.
Maybe a different brand will work for you too. As the lovely ladies on here have said previously, sometimes it’s just a matter of tweaking things and trying different brands and medications. Hope your pain subsides soon :-)
Julez1958
Member
4 years ago
Hi I was not put on tamoxifen but on Letrazole.I am 63.
I had a bit of joint pain early on but it settled down.I have been in it now for 11 months.
That may be what happens to you with this drug, I read a lot about side effects of all the AI drugs and tamoxifen before I started the Letrazole and this can happen.
I found acupuncture helped too but doesn’t work for all.
Exercise is important but it is hard if your joints hurt- swimming is great if you have access to it.
Many other ladies on here have gone through it and will have helpful advice.
Wishing you all the best.
Nina75
Member
4 years ago
Thank you @ four leaf clover…. Such a reassuring message!!!!!
FLClover
Member
4 years ago
@Nina75 I spent about 2-3 months waking up every morning convinced I’d just had a nightmare. Then realising it was true and wishing it had been a nightmare. And one of the hardest things about all this is exactly that: the realisation that we’re alone. No matter how much wonderful support you have, YOU are the one having to go through the rigmarole. When we enter the theatre, we go alone. The radiation room, alone. The chemo chair, alone. When I say alone, I mean we’re the ones all this is being done to. And that’s when we realise we really are alone in this world. Anything that happens to us in life, happens to US. Our friends and family can be there for support, but no one feels it like we do. I think this was one of the hardest parts of this breast ca diagnosis for me. It does take time to process, but once you do it makes a world of difference. Dealing with the psychological aspect of this diagnosis has helped me find myself, and now I don’t feel alone anymore. I could be by myself for days, and I wouldn’t feel alone. I also trust my body. I know I have my own back. Everyone else is a bonus.
Almost two years later, I’m pretty much over it and feeling a million times better. However, when I visit places that remind me of that time right after diagnosis, I still feel like crying because I’m reminded of how alone I felt, and that was the worst part. I guess healing really does take time and patience. You’ll get there ♥️.
Nina75
Member
4 years ago
@arpie, thanks for your lovely welcoming message. I really appreciate it. It’s amazing how you can be supported by a wonderful hubby, Kids, friends and family but still feel utterly …. Alone….
I will tell my story, I’m just finished treatment not long ago and It’s like I just woke up from a bad dream. It’s mot a dream though, it’s real!!! I have to process it all now…
Nina75
Member
4 years ago
Thanks ladies, appreciate your comments.
Ellamary98
Member
4 years ago
My joint pain on Tamoxifen also settled down significantly after a few months. I hope yours does too! I did find that it was better if I kept moving.
Cath62
Member
4 years ago
@arpie just wanted to mention while tamoxifen is usually given to women who are pre menopause, it is also given to women who are post menopause too, if just depends on one's pathology and other medical conditions they have.

For me I was post menopause but had other conditions with joints (some arthritis) so this was a best option so not to increase any joint issues for me. Tamoxifen doesn't cause the same joint pain as the other AIs are known for.