I have been taking tamoxifen for about 3 weeks now and am experiencing lower back and hip pain like never before. I had a lumpectomy this year, followed by 4 weeks of ray treatment. Simple tasks like getting in and out of bed, the car and off the couch are causing excruciating pain. After many trips to the physio, with no relief, I started to look a little closer at the possible side effects of tamoxifin. I have since read the many posts on the web and am happy to see that I am not the only one experiencing these symptoms. I have contacted my specialist and although he says it is unlikely that the drugs are causing this, he has suggested that I stop for 6 weeks to see what happens… I can’t imagine 5 years of this drug if that is the kind of pain I will have to put up with. Any advice would be appreciated :0)
Hi Dutch,joint pain is a common side effect with Tamoxifen (even though they say it isn’t ),however I found that after about 6 weeks ir passed and is now only occasional and bearable .Check what brand if Tamoxifen unit have cos some are most definitely better than others for side effects and effect different people in different ways.I am on Teva.
All the drugs have side effects I started on arimidex and was in total agony I stuck it for 18 months on advice of my oncologist then was put on exemerstane things didn’t get much better so after a year on them was put on letrozole which was very slightly better I stayed on it till this Monday when I was discharged my oncologist said now they are continuing the tablets for ten years instead of five and sent me home on tamoxifen I’ve only taken four days and my head is terrible as tho I’m falling over and pressure and my urine has today turned bright yellow don’t think I can even think of having another five years of problems as I have already lost five as not been able to walk more than 100 yards at the most
Stick with it for a couple of weeks and see how you go on,I found that nausea,dizziness settled after 2 weeks and joint pain settled down after a month or so.What brand have you been given,some seem a lot kinder than others .
Read my comment a posted today on all my different meds made me housebound
Ps quality of life is v important it’s a difficult balance isn’t it.
Same here after five years I’ve aged at least twenty years after the tablets sitting here very depressed at the moment as now its ten years of tablet taking discharged monday and sent home on another five years of tamoxifen
Read my comment
The first couple of years are the most crucial with the meds ,if it spoils your life to that degree it’s not worth it .There are 2 antidepressants that are prescribed to help with Tamoxifen side effects,some of the ladies I talk to have found then really helpful.If it is affecting your mood badly speak to your GP urgently.
I quit taking Tamoxifen back in June 2015 and to this day, my foot pain in the heel has gotten terrbly worse. It did not go away nor was my Oncologist even concerned that I suffered such pain because of the tamoxifen. I have been to a podiatrist and there isn’t anything that he can do to relieve the pain and suffering. He has tried everything for what he thought was plantar fasciitis. I was not going to take these meds for five years, no way! Not after it caused my severe lower back pain and heel pain. Am I the only one out there suffering? If not, what did you do to get rid of the pain?
Hi everyone
I’m having the same side effects and I know my body. I’m only 43 and I have been physically active since I was a teen. I have pain in my lower back and more pain in my right hip. I’m also experiencing 15% vision loss. I contacted my oncologist and she is telling me that the side effects are not from the tamoxifen. I went to a eye doctor that my primary eye doctor sent me to and he told me it’s my age. I’m so upset, because I feel ignored and I don’t appreciate being bull shifted to. Im going to another eye doctor and I’m changing my oncologist. I’m fed up.
And on top of it all, I’m getting arthritis in my hands to the point it hurts to even type this message or hold a pen or a brush for a short period of time.
Furstrated.
They really shouldnt ignore your side effects because they are really common side effects from Tamoxifen just check out the posts on this site .I am going back to Optician because I have really noticed my eyes are a lot worse after 7 months on Tamoxifen .Your joint issues could be due to meds too.Could you ask to see another Onc in the dept if you are not happy with yours??
I have taken Tamoxifen, Arimidex and now Letozole and they all have horrible side effects in different ways but they are really important parts of the treatment, Try taking cod liver oil daily and a glass of tonic water as that might help a bit and they are quite natural supplements.
Thank you. I appreciate the feedback.
I do sympathise, Ive have had lumpectomy my lymph nodes removed followed by chemo and radiotherapy. Just when you think you’ve managed to get through all the treatment a year on tamoxifen I don’t have a part of me (except my head) that doesn’t hurt even my fingers ache ! It’s a very difficult balance to know whether to carry on with the Meds or enjoy a better quality of life ! My onco never really said much about the aches and pains my doctor has prescribed paracetamol but they don’t work! It wasn’t as bad as it is now I can only assume it’s tamoxifen I’m also or was a very active lady I have horses and find life very difficult looking after them feeling as I do!
I have read drinking tonic water helps, I’m going to give this a go, do hope things improve for you x x x
I have been on tamoxifen for nearly 18 months and keep telling myself it will get better! But waking in morning with swollen fingers that wont straighten, joint pain, sweats arent as bad but still there. Pins and needles in fingers and numbness for a good hour each morning. Now i have aches in lower back and top of leg joints. am seeing doc to ask if i can come off for a while. concerned what will I be like after another 8 years on this stuff? i have horses and want to be an active sports person. i go to the gym and do yoga. I have tried everything remedy and supplement possible. I dont think i am suffering as bad as some people but will it get worse? and what is the alternative? do you tale the risk and try to feel normal again?
Totally relating to many of the posts here. I’ve been taking Tamoxifen for just over a year. I couldn’t tolerate Anastrozole at all as the joint pains were excruciating. On Tamoxifen it varies, sometimes I’m in agony and sometimes just a nagging pain. Fatigue knocks me out after one to two hours of any kind of activity. I’ve gained weight and it’s mostly gone on my abdomen. I’ve tried dieting but results are soooo slow I become disheartened. My memory is shot. The other day I was saying I would like to see Sam Smith live and my son reminded me that I already had, a year ago … I had completely forgotten!!
I had to stop taking Tamoxifen a week ago in preparation for my reconstruction surgery which is tomorrow. And today I noticed that I am nowhere near as stiff when I get up off a chair and the getting out of a chair process is much easier. I saw oncologist yesterday and he told me another patient had similar issues which completely disappeared when she changed brands. He couldn’t remember the name offhand but will let me know. Apparently the one I’ve been on costs £4 a month and this new one costs £70 per month I think.
I’ve been told that my cancer was highly aggressive and oestrogen receptive so I would be very reluctant to stop taking it but my Lord, I feel I’ve aged about 25 years since my diagnosis in 2014!!
Hi, I stopped the tamoxifen on Sunday but mine was coo of low mood and no sleep and within 3-4 days I feel “normal”. It was my birthday yesterday, and my children are coming for family Sunday lunch and I wanted to feel happy and not flat. I will take them again on Sunday night. But the break is a nice feeling
I found relonchem to be best for me - teva gave me really bad flushes.
After complaining about fatigue, joint pain and weight gain, my team organised full bloods, CT scan, bone scan and spinal MRI. All came back inconclusive so have to repeat full body MRI next month.
I agree that quality of life is so important, I’m on a break from Tamoxifen for a few weeks as having recon on Tuesday, definitely going to ask onc if I can stay off them
Further to my previous posts, I am now on fareston after having a 6 week break from tamox. The hip and back pain gradually improved over that time (don’t expect immediate relief!) And although there is still some soreness in the morning, I’m happy to say it is no longer impacting on my everyday life. Have been on fareston for about 3 weeks and so far so good. I am convinced that tamox was the cause of my pain and the only advice I would give is do not give up talking to your specialist about alternatives to this drug. I have also taken up yoga which has also helped. All the best to you all 