Hi I have been on Tamoxifen for about 8 months now without any side effects. However recently Ihave been experiencing joint pain in my knee.
Anyone else had this and do you think it is a side effect of Tamoxifen or am I just getting old! I am 51 an dnever had joint pain before.
Sue
Hi Sue, i have been on Tamoxifen for 35 days now, i think, i am 44 and i never had trouble with my knees, now of an evening they are so sore when i stand up, i’m like an old woman, am going to tell the onc when i see him next month
Alison xxxx
HI GIRLS,
im only on my first month of tamoxifin (3 weeks) im 30 and im suffering knee pain and ankle pain kind of soreness reall, especially in the night time…
i am starting to feel a little hot at times but not flushes yet…
when can i expect them to appear
breda
x
Hi Breda, i got them within a few days, maybe you will be lucky and not get any, lets hope so, but my knees kill, and i keep getting a sore jaw! hubby can’t complain about that lol
Alison xxxx
Thanks for your messages everyone. When i first started taking Tamoxifen I had a few hot flushes but they disappeared after a few weeks and then I did not have any side affects until my joint pains in my knee. It gets really sore when I walk at at night when I am lying down. Is it worth rubbing anyhting into it or should I mention it at my next hospital visit?
I’m telling my onc about my knee’s when i go, this was one side effect that i really hadn’t expected
Alison xx
I also have painful joints - knees (had before Tamox though), thumbs and big toes especially. Other joints bother me now and then. I was told it’s due to oestrogen depletion, not a side effect of the Tamoxifen - which is all one and the same to me!!
My consultant put me on 400mg Ibuprofen 3-4 times a day, which has helped and now I only take it twice a day.
I do get especially stiff when I get up and in the evening. Manage quite well during the day.
For those suffering, I’d certainly mention it to whoever is treating you. There are things out there to make life a little easier.
Best of luck to you all,
Jacki xx
Hi Jackie, thank you for that, will certainly be telling the onc, are anti-inflammatories the same as ibuprofen?
Alison xxxxxxxx
Hi Alison,
I believe that Ibuprofen is one of the family of anti-inflammatory meds. I have come off the Ibuprofen for a trial period (my decision) as I suffer from stomach probs and it’s started to bother me, so thought abstaining might help me establish whether it’s the Ibuprofen that’s causing the pain. Unfortunately, there aren’t many meds that don’t have side-effects…
Hope all goes well for you
love,
Jacki xx
Hi Sue
I’ve been on Tamoxifen for 7 months and have been having joint pains too which I put down to the Tamoxifen. My breast care nurse said Tamoxifen isn’t known for causing joint pain and says it is more likely to be the chemo; however I can’t see how this could be the case as I finished chemo in January and these problems are more recent. When I researched the side effects of Tamoxifen I found an article that said one on four women get joint pains so I remain convinced that’s what it is. I can actually hear my joints clicking when I move - very disconcerting!
I was talking to a neighbour last night who works for Breast Cancer Care and she suggested taking fish oil supplements so I’m going to get some tomorrow. I’ll let you know if they help.
Jacki - my breast care nurse recommend using anti-inflammatory gels if you can’t tolerate Ibuprofen in tablet form. I saw one called Voltarol that is diclofenac-based. I tool diclofenac tablets for pain during Taxotere and found it worked better for me than ibuprofen. It may be worth a try.
Hi Lolag, i didn’t have chemo, but the pain in my knees gets worse by the day, it must be the tamoxifen, sure it couldn’t be the sleeping pill, they are the only two things i’m on
Alison xxxxx
Hi, Alison
That more or less confirms it for me. I’m sure they (the medical profession) seriously underestimate the severity of the side-effects many of us women get on Tamoxifen.
In answer to your previous question, ibuprofen is just one of the more common types of anti-inflammatory and is the active substance found in Neurofen and some other common painkillers. Diclofenac (Voltarol) which I mentioned is stronger and is available only on prescription. There are others but the names escape me at the moment.
Just thinking, i have some of that Diclofex left, am tempted to try it, the pain is that bad, just hope i don’t start with the sciatica had that when i was pregnant, and i really do feel for you getting it now, its just not nice, but suppose its cos our bodies are starved of oestrogen
Alison xxxxxxxx
I have a lumpectomy next week, I have arthritis in both knees and can hardly walk already, I am going to be on tamoxifen I have been told for approx 5 years, if I have severe joint pain already, can it get even worse, I dont know if I could stand any more pain, I am waiting for an operation on my knees as well , but the lumpectomy takes priority . its all rather worrying, Im already like an old woman, when I get up in the night or in the morning, getting my knees to take my weight, and getting to the loo is a problem, it also worries me as I am having lymph nodes removed, that I wont even be able to use a walking aid. Has anyone else experienced this problem, Im terrified I wont make the toilet in time as it is.
I am on my 2nd month of Tamoxifen and also few days before starting it commenced herceptin. i had terrible joint pains which despite what you read “easily accecessed” info doesn’t tell you that it does cause this side effect. I have had a month now of Nolvadex D branded rather than generic tamoxifen and I no longer have difficiulty walking when I get up from sitting and can bend all my fingers with ease which i couldn’t do before. Go & request it from your GP it’s your right and you may mind taht just as i did all the aches and pains go after a month-worthy of a try and don’t be fobbed off by them telling you there’s no difference in the ingredients. I’m not imagining my symptoms or now the lack of them!
mandarin x
Hi Ladies,
I have been taking tamoxifen for 8 months now, with hot flushes in the beginning but they settled down. Over the last month or so, i wake each morning and have to tread carefully as the joints in my feet ache so much, along with my hands. My eyesight has also gone downhill and have vaginal itching that drives me crazy.
I did a little of my own research into the side effects and each and every one of the above are on the list.
I am seeing my oncologist soon and hope that he can do something about it. It’s comforting to know I am not alone.
Wishing you all well
Audrey