Have already managed to lose this post once. will try again.
Have been having hip pain, radiating from the sockets and some in my butt cheek if that makes sense. It comes and goes but last few days left side of hip has been paining. All my chemo/rads side effects have settled but have been getting these pains since August when I started Tamoxifen. My onc says that tamoxifen doesn’t cause joint pain so what can it be? Bone mets? I had a big tumour with 4 nodes involved so have been told I’m high risk. Just wondering if anyone is experiencing similar pain, am hoping it’s just tamoxifen and nothing more sinister. Anyone else in the same boat? kind of want to stick my head in the sand!
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Hi mulligans
I am sorry to read that you are having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe it help to talk this through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday10.00 to 2.00.
Best wishes Sam, BCC Facilitator
Hi Mulligans, so sorry to hear you are in pain. A few thoughts.
Your onc is actually wrong! Tamoxifen can be linked joint pain, there is a growing body of scientific research into this. The science is complex but bascially in the days when everyone had Nolvadex (the oringial brand) no one reported joint pain. Once the various generic forms (Wockhardt, APS/Teva, UK Generics) became widely used, reports of small joint pain (fingers, toes, ankles and wrists) began to arise quite frequently. Back in 2010 some research was published which concluded that either there was something in the binding agents of Nolvadex that protected against Tamoxifen induced joint pain or there was something in the binding agents in the generic brands that caused joint pain. Because Nolvadex stopped being made in the UK in 2010, it seems no further work was done. My hunch is that the former is the case, as people on all three brands report joint pain, but I am not a medical researcher…
Large joint pain is not, so far as I am aware, linked to Tamoxifen/binding gubbins, but quite a few people ask this same question as their shoulders or hips hurt. In some cases it turns out to be arthritis. It might be worth getting this possibility checked out.
I had low back pain for a number of weeks about the same amount of time after ending active treatment. After mentioning it to onc who dismissed it, I spoke to my BCN who asked me to describe it for her. She then reassured me it was ‘the wrong kind of pain’ to be mets and was most likely a delayed reaction to all the pummeling I’d had with surgery and rads. It did resolve given time. Obviously I cannot say this is the case for you, but it might be.
I am roughly a year ahead of you, from a similar starting point and , apart from my joints and hot flushes, am fit, well and happy. Try to to worry too much, but at the same time, don’t let them fob you off.
Meant to say the tamoxifen joint pain stuff explains a lot of my other aches!
Thanks Revcat, was hoping you might reply because I had followed some of your posts before and remembered you mentioning this but couldn’t find it on the search here. Your posts are always so good and informative. Spoke to my breast care nurse and saw a physio therapist and they gave me excersises to stretch out the muscles that are deep in my pelvis, it really has helped a lot. They seemed to think that it’s my body still recovering from all the treatment. In saying that still have aches and pains but have to see my onc soon so will let him know whats going on and see what he thinks. It’s hard not to think the worst when you are feeling pains you’ve never had before. I’m glad you are doing well, thanks again x
I am struggling at times with left hip pain, I can describe it as an uncomfortable niggle rather than pain, especially suffer at night. In the day, it seems a lot more like sciatica and aches but also feels numb at the same time. Ive had it for over 6 months and my onc has twice offered a bonescan but ive so far said no, lets see how it goes! (This is mainly due to a clear bone scan i had before the hip pain started)
I am putting the pain down to the tamoxifen. Paracetamol and ibuprofen ease it off, if anything changes to this, then I will definitely get myself investigated!
It is worse when im inactive so i’m not worrying myself about it at the moment 
Hope this helps,
Truddles xx
Hi mulligans, I too suffer greatly with ankle ,wrist and hip pain, the pain in my shoulders has shown to be arthritis. I find it very difficult to get going on a morning and when I have any period of inactivity, I am having physio although it is too early to tell if it is helping. My onc has advised to do regular exercise and I take diclofenic which helps, it seems to be just another thing we have to put up with unfortunately. I find a warm bath with epsom salts helps. x
Tamoxifen has been a definite source of bone pain for me. I’ve been on it since 2011. First year was the hot flashes - as often as every two hours. The interrupted sleep had me exhausted. Then came the bone/joint pain - starting in my toes. I was thinking that I had “cancer itus” - meaning every little ache and pain made me think that my breast cancer metastasized. After the second year, the hot flashes settled in to just 2-3 times daily but then the bone pain increased. My shins felt like they were going to explode from the pressure at times. Then this “bone pain flare up” lasted 8 weeks. I was thinking that amputation would be the only relief. Then my hips started aching making it difficult to walk and climb stairs. I switched from tamoxifen to Arimidex in 2014. Within 24 hours - no more hot flashes or bone pain! Then after a few months of feeling great, I had post menopausal bleeding. Tests showed that the lining of my uterus was too thick - so I had a D&C. More tests showed that I was not in menopause (after no period for 4 years) so I had to go back on the Tamoxifen. Here I sit, woken up in the middle of the night by severe hip pain again. My shins are beginning to feel like they are on their way to building up with pressure once again. Oh it’s definitely the Tamoxifen!
I have been on Tamoxifen for four years, I am maybe lucky that I only seem to get severe joint pain at night, in my hips, however it has now got to the point where I am waking up crying in pain. I can’t say I have found exercise helps.
Hi I’m
The same!! Never suffered with joint pain until I started taking tamoxifen, now my hips and back aches 
x
I’m wandering g if anyone else gets pain in their elbow joints? I’m on tomoxifen and when I wake in the morning I am stiff all over my hands knees and elbows and toes. I think I have got athritis but never had the elbow pain before taking tomoxifen and definetly was never as stiff and sore x
I been having pain in my arms and legs
I do I have to much pain in my arms and legs every day it’s pain full
I’ve been taking Tamoxifen for 8 years. After my 5 years were up my oncologist told me of a study showing that if patients like me stayed on for an additional 5years the reoccurrence rate dropped slightly. Dr said it was my choice continue on for the additional 5 years since I was managing side effects well. All that to say that’s did loot for the extra 5. On this 8th year I’ve noticed my hip joint on my right side is killing me!!! Nothing has helped. Heard that drops in hormone levels can also cause this pain. I’m heading to oncologist to find out what’s wrong. I’m 50 but this pain makes me feel and move like I’m 80!! The pain is teal. I believe it’s the tamoxifen or the drop in hormone levels due to early menopause.
The joys of tamoxifen. I have had all those side effects too.
I do still get the leg cramps and my GP did say that they are linked to the medication. I tend to get them more at night and he suggested that I try to change my bed and keep my leg raised on a pillow. Have to say this did help.
I also find exercise helps - as in walking nothing too strenuous and swimming.
Yet still, can you reply naming what brand of Tamoxifen you are taking at the moment?
There are at least 8 brands plus the original make (Nolvadex) and you may find a particular brand suits you better than the one you have at present. I was unlucky with side effects (dry eyes, leg cramps, weight gain, vaginal dryness, and just moody), but you may get more used to these over a longer period of time though.
Hello,
I am 54 years old. I’ve been taking Tamoxifen for 4 years with 1 year to go. Tamoxifen caused me to have so many fibroid tumors that I had to have a hysterectomy in Jan. (It was caught on an MRI which was done to see why I am having so much hip and leg pain.) The only symptom I had was having to pee a lot, and a few UTIs. I was shocked. My uterus was the size of a 5 month pregnancy, all internal. I didn’t look pregnant.
Then in May I had cataracts removed from both eyes. I read that some wonder if it’s a Tamoxifen side effect. I asked my eye doctor about it when I first started taking it. He dismissed it. I thought I might have cataract surgery one day, but in my 70s, not at 54.
It is now Nov and I am scheduled to have a hip replacement Dec 19th. (I have had joint pain in my fingers, ankles, and hips.) After the hysterectomy they switched me to Anastrozole. That’s when the hip pain got REALLY bad. So I switched to Letrozole. Not much difference. My choice then was to endure one more year on Letrozole or go off completely. I asked why can’t I go back on Tamoxifen, since the joint pain wasn’t as severe? I had to be my own advocate. Who knows thpugh, maybe the pain was from a 4 year build up of Tamoxifen in my system…? So Im back on Tamoxifen.
My Gynecologist referred me to an Orthopedic doctor. He took xrays and said my right hip is bone on bone. The left also has wear, but not as bad. Again, I thought I might have to have a hip replacement some day, my Mom had both hips replaced, but I thought I’d be in my 60s or 70s, not 54!
Are all my problems the result of 4 years of Tamoxifen? I dont know. But I wonder.