Hi Crafty T
Welcome to the BCC forums where you,will find lots of support and shard experiences, our helpliners are also on hand with practical and emotional support on 0808 800 6000, lines open during the week 9-5 and Saturday 10-2
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Take care
Lucy BCC
Friends, I just Googled “tamoxifen and wrist pain” and landed here at this discussion. Age 54 and on Tamoxifen since April 2011, I am right in the throes of what everyone is describing. My very sympathetic oncologist, of Anne Arundel Medical Center, Annapolis, MD, did confirm that 10% of Tamoxifen patients suffer from the arthritis-like symptoms. I had a boot on my foot for 4 months last year for a foot problem (which took a year to completely resolve) and suffered DeQuervain’s in my thumbs/wrists while going through that. I looked like a model for those black wrist guards…with the black foot boot at the same time. I am a 17-year teacher (out one year for BC treatment) and cannot grip piles of books or files out of the drawer any more. I have also found that the slightest muscular “twinge” I experience anywhere in the body results in a several-week recovery period. I was an avid hiker, 25-mile biker, and 5- and 10K walker prior to all of this so it has been extremely frustrating. I told my doctor that I absolutely cannot and will not spend these five years of my life taking NSAIDS for the joint/wrist/hand/back/shoulder/foot pain (although he said this was fine to do).
I did start doing laptop yoga at home on my floor with the free www.doyogawithme.com and have since learned that I do not feel aches and pains as long as I am doing yoga or walking (30 minute limit right now versus 90 minutes before chemo). If I do a yoga session for hips/back before bed I do not wake up with aches and pains at night. It has been extremely helpful and I do not take NSAIDS unless I truly injure myself and then only for a few days and it is usually my wrists and forearms that have been strained somehow.
I hope this is helpful to someone. Your posts have been very helpful to me and I look forward to any other tips people have found helpful as we get through this treatment together. *Healing Thoughts* for all of us and thank you so much for reaching out and sharing. We can get through this! The alternative is not acceptable. Look at how much we have endured already! Please try the yoga (I am only on “Beginner” level but the stretching is SO helpful) and let us know if it helps you, too!
Hey there,
My mum was diagnosed with breast cancer in 2012, she went through surgery, chemo (lost her hair) & radio, she finished her treatment at the end of November 2012, she has been taking tamoxifen for just over a year now and we are reliable to hear that she isn’t the only one getting pains, we never thought it could be the tamoxifen, relieved it’s not anything less. She suffers with knee, back, ankle, finger, wrist & rib pains in the last few months along with hot flushes which can range from mild to severe, she also gets cold sweats. She gets very tired all of a sudden also from the constant pain she’s in, don’t get me wrong some days are good the pain is tolerable and she can get on with life but other days like today are bad and the pain is constant and severe those are the bad days. My mum and I just wanted to share her experience incase anyone is suffering in the same way, we wish ye all the best and if you would like to know anything else just leave us a message and we will reply as soon as possible 
I get the cold flushes too. They are horrible. Worse than hot flushes because your whole body gets cold and goosebumpy and even though I’ve a heavy duvet i have to shake about to warm up at night. At least i can kick the duvet off when I’m hot!
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What’s yellow card scheme ??
So I am amazed to read all these posts about joint pain with tamoxifrn. I’ve been taking it for almost 2 years and am now really struggling with painful wrists, hands,fingers, knees, toes and shoulders. I have had lots of blood tests and am waiting for results. I had an ultrasound scan on my wrists and fingers last night and was told it wasn’t arthritic problem.
Wondering if anyone with similar symptoms stopped taking tamoxifen and was there an improvement. Any advice would be appreciated. Got follow up with a rheumatologist on Thursday to discuss bloods and scan. Would like to talk to him about tamoxifen issues too.
Thanks in advance.
I’m so relieved to read about your experiences with joint pain, even though it’s a shame that most of us didn’t know how widespread the connection is to Tamoxifen. If I’m walking (with running shoes), I’m fine, but if I sit still (or lie down), my ankles feel sore, as if I’d twisted them and slipped on a rock. My knees were chronically painful long before Tamoxifen, but now they’re so weak that one of them got injured just by twisting a bit to get a heavy suitcase onto a train. My tendons are always really tender too. Does anyone else feel that? it’s as though my shins and IT bands and ligaments all around my knees are bruised all the time.
I’m just over halfway through with my 5-year “sentence,” though I have to say, I’m hopeful that this med will keep me from getting cancer again.
I am at the end of my teather one year after starting to take Tamoxifren, I had better quality of life when going through chemo and radiotherapy. I have aches and pains everywhere and some days I just can not fight it. Coupled with extreme exhaustion, I am getting to the stage where I do not think I can carry on like this. The pain wakes me some nights and obviously its frightenening to think that something else might be going on. I have had a full blood screen which was clear recently and i am being told by my doctor on each visit that its ;normal’ for some people to feel like I do. I was diagnosed nearly 2 years ago and I can not remember what it feels like to be healthy anymore.
I have been on tamoxifen for 2 years. I started having joint pain in my fingers and sometimes my toes about 5 months ago. It started suddenly and I thought it might be the tamoxifen, or maybe Lyme disease. I knew it wasn’t arthritis because the pain would not always be in the same finger or toe. Plus, interestingly, it got worse at night when I was sleeping. My oncologist didn’t take my complaint of joint pain seriously but I just recently stopped taking tamoxifen temporarily per my oncologists instructions because of another problem I was having to see if it helped. My joint pain is slowly improving now that I am not on the tamoxifen. I had an appointment with my primary care doctor recently and he thinks the tamoxifen may have caused an increase in lactic acid (lactic acidosis). The fact that my pain was so much worse at night when my muscles weren’t moving and able to pump out the lactic acid gave him this clue. This might be worth looking into for anyone experiencing joint pain.
I have been diagnosed with LCIS and I’ve been on Tamoxifen for 2 years because I’m at high risk for breast cancer… For about the last 3 months I have noticed my leg cramps getting worse, especially while I have been sitting all day at work, and waking up at night recently because of the achy pain. I was concerned about the pain until I read the other comments that it took awhile before the drug caused arthritic symptoms. My oncologist said that this drug did not cause it, but the one for post-menopausal women did. I’m waiting for new insurance to become active in order to make an appointment with him to discuss this. Taking NSAIDS daily as a solution is out because they adversely effect your stomach lining.
I’m going to try the suggestion one person gave of the yoga hip openers before I go to bed. I also may make the decision to go off the drug and stay on a plant based food diet with only a little dairy. I read up on quinine, and it is not recommended by the FDA in the USA to take because over time it has dangerous side effects and is primarily prescribed for malaria.
What a relief that is not just me. If I find an alternate solution for my leg cramps, I’ll be sure to post it to this forum.
Thank you.
Melissa
I was suffering severe side affects mood swings… bleeding gums…weight gain. Hot flushes. Joint and knee pain… anxiety…and a whole heap more after 10 months of tamoxifen… I took myself off them after 10 months and now been off em 1 month. My quality of life is improving. I came off my tamoxifen cos my statistics using them was less than one per cent so please talk to someone first. … I made my own decision .xx
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I have contributed to this thread two or three times over the past few years and feel I must post an update due to a huge change. I met with my new oncologist last week (moved to GA from MD) who feels that the joint pain I was experiencing was due to the following triple-whammy:
1. Taxotere during chemo can take a year or more to recover from (I reacted poorly to this during treatment)
2. Chemo throws you into menopause which increases aches and pains in women
3. Tamoxifen.
Because I am doing so much better in my fourth year and with light yoga, she feels that the combination of the three things was the cause of my problems - especially the Taxotere. I never gave it a thought. I am about to switch to the aromitase inhibitor after a bone density test this week to complete the 10-year therapy. I hope everyone else is starting to feel a bit better, also.
I have been reading through all of these posts. It is very reassuring to know that I am not alone in this struggle. I have been on Tamoxifen for almost two years. I feel like my body has aged by 30 years. I hobble around like an old lady most of the time. As I read along tonight, I was thinking to myself that I am just going to stop taking it. Then I read Stella’s post about her symptoms disappearing. I’m going to try to hang in there!
Vitamin D levels normal so not cause of joint pain. Looks like it’s all due to lack of oestrogen.
Hi everyone, my mum has recentley been diagnosed with breast cancer & has been put on tamoxifen, since shes been on them shes getting awful pain around her upper back, she cant sleep, she barely even goes out anymore where shes in so much pain, shes been on them for nearly a month now. she also suffers rhuematoid arthritis. she originally went in hosptial for rib pain, turns out she fractured it, they told her they was sure it was bone cancer, then she went to an oncology doctor, he told her he strongly believed it WASN’T cancer at all. well shes sinced been diagnosed with breast cancer, like i said. They arent being very quick with her treatment, shes still unsure whether it is in the bones as well but they’ve just given her these tamoxifen. So basically shes really worrying that its spread etc, thinking thats whats causing her this pain. have any of you guys suffered excruiating pain on these tamoxifen pills? would love to be able to put her mind at ease somehow. thanks
Hi Gem,joint pain is a very common side effect of Tamoxifen and the other medications given to post menopausal women.Some women are very badly affected, it can settle down once your body gets used to it, if not ,it is worth looking at the alternatives with her Oncologist. Hopefully it will prove to be the medication and nothing more serious .
Hello. I’ve just finished five years of Tamoxifen in October and my joint pain seems to be worse! Both knees are now painful plus my feet (feels like someone is sticking a knife into my heels and my toes hurt) and my finger joints are tender. Not sure what to do - anyone else experiencing this?
I was on tamoxifen for 4 years and started getting terrible right calf pain, tightness, for a period of 6 months. During that time because of the tightness I tore both the gastric and solcus muscles in my calf because of the tightness.I went off the tamoxifen and within 10 days the tightness and pain stopped and has not come back. My oncologist said it was doubtful that the tamoxifen was causing the tightness, after 4 years on the drug. He said if there was to be a side effect it would of started sooner. I proved him WRONG. He did however give his blessing for me to stay off the tamoxifen as I had been on it for 4 and a half years. I am still going thru physical therapy to stretch my calf muscles from all the damage the drug did. It has been 2 months now since I went off the tamoxifen and the pain, tightness in my calf has not come back.