I have been on Tamoxifen since the end of April and apart from the odd hot flush I have had no side effects but two weeks ago I woke up with severe joint pain in my knees and they were also really swollen. My GP said it wouldn’t be caused by the tamoxifen and the Oncologist said it was due to the chemo and not the tamoxifen but after reading all the threads on here it seems that it is the tamoxifen after all.
I am in so much pain now that I am considering coming off the tamoxifen as I can’t be in pain like this for 5 years!! Has anyone else experienced knee pain 5 months after starting Tamoxifen and has anyone else considered coming off it?
I take herbal tablets for my joints and cod liver oil but no joy! I’m even on anti inflammatory drugs and they don’t help at all.
It seems that the doctors don’t want you coming off tamoxifen so blame everything on the chemo!!
It’s really getting me down as i’m only 41 and feel like i’m trapped in an old ladies body.
I’ve been having similar problems - mainly with my feet though. Although my knees are now starting to hurt as well. Its been getting me down too as I can barely walk to the shops and some days it takes me ages to get out of bed as I am so stiff.
My oncologist luckily takes it quite seriously. I told him about the posts on here which I think helped. He said its unlikely to be the chemo causing problems…
So far he’s recommended changing brands - which has helped with the fluid retention but not the pain. However the brand I am using is now being discontinued and I gather there are not many choices left.
I’ve also been taken 400mg ibuprofen three times a day - another recommendation from the oncologist.
The bc nurses suggested gentle exercise - like yoga or pilates -so I’m starting pilates this week on machines which look like medieval torture instruments! However as the exercises are non-weight bearing so the stretching should help.
Lastly my onc suggested changing to zoladex injections but I’m not sure about this and am still investigating.
Perhaps you could talk to your bc nurses and see what they suggest. Some of their other patients must have similar problems as the joint pain seems quite common.
I’ve been to the doctors again last night about the knee pain and she has now given me a presription for a morphine based drug… but don’t really want to have to rely on morphine for 5 years!!
I read somewhere that with tamoxifen you have a 30% chance of the cancer not returning and without Tamoxifen you have a 205 chance of it not returning… have you heard this % or have you heard any other ones… just want to find out the correct % before I quit taking it!!
By the way, how has your hair grown back? mine has come back dark and curly… I look like Betty Boop!!! lol
I keep forgetting to ask about statistics but I’ve read something similar to yours however not sure how accurate they are. I did ask about not taking it and my oncologist said that the good far outweighs the bad.
Likewise with drugs - I’m taking high dose ibuprofen but don’t want to take it for five years because of the side effects.
I have really bad night sweats as well but as I’m now post menopausal I might have got these anyway so they aren’t a problem - apart from lack of sleep some nights.
Good news about your hair. Mine grew back curly too - only grey. It won’t grow long though although it has thickened up at last and apart from the curls is starting to feel like my hair again. I’ve now had it dyed a deep red/violetty colour!
Another ‘victim’ of Tamoxifen here! I have joint pain in elbows and fingers but not knees. I would expect weight-bearing joints to be more vulnerable (especially as I’m not exactly skinny!).
I take:
50mg Diclofenic Sodium (anti-inflammatory) three times a day
Co-Codamol (2 up to 8 a day) I generally manage on 6 a day
Cod-Liver-Oil (classed as a food supplement)
Glucosomine & Chrodontin (classed as a food supplement)
They keep pain under control but it can flare if there is a cold snap of weather.
I have also had gynecological problems which have been attributed to Tamoxifen. To say I HATE what this drug is doing to me is an understatement but I acknowledge the little b******* is helping keep the cancer at bay.
The strength of the Co-Codamil I take is: 8mg codeine phosphate and 500mg of paracetemol. There are stronger versions of this drug but they often (if not always!) cause constipation.
My oncologist didn’t give me any statistics, he just said I had a much better chance of survival with Tamox than without - in other words “put up and shut up”!
I had a WLE and full axillary clearance with further revisionary surgery to remove margins followed by 25 sessions of rads. Prior to surgery I was put on Letrozole (Femara) which shrank the tumour sufficiently to make more radical surgery unnecessary. I didn’t have chemo. I changed to Tamox about a year later. I am two years post diagnosis and eighteen months post treatment.
That’s a shame that’s it’s codeine as I can’t take it. Until I went on Tamoxifen I use to get sore knees if I worked out in the gym too much much only then but this is all the time! But the strange thing is, is that this only came on a few weeks ago… so after I had been on Tamoxifen around 4 months.
How many of your lymph nodes were removed/affected? Mine was 3 out of the 22 removed.
I’m taking Noveldex too but apparently its no longer being made. I was worse on the generic brand so not sure what to do next. I have been offered Zoladex injections but not sure of the effects of those so have a few weeks to think about it.
How long did you take Evening Primrose for before the flushes stopped. I’ve been taking 3000 a day for the past week but haven’t noticed any difference yet.
Has your oncologist suggested Zoladex instead of tamoxifen? I’ve heard the side effects are worse on zoladex but I guess everyone is different. If you don’t mind me asking, how old are you? is it because of your age that they have suggested it?
I can’t remember how long it took but I think it was around 2-3 weeks before the hot flushes stopped.
I’m just 49 - I was 47 when I was diagnosed. Tests showed I am now post menopausal.
They’ve suggested Zoladex because the joint pain isn’t as bad. However I’ve read differently so not really sure what to do. I’ve started pilates this week and hope that might help a bit.
I’ll keep on with the evening primrose oil and hope it has some effect.
In answer to your question I had 18 out of 20 lymph nodes removed which I have been subsequently been told is classified as an axillary clearance. No nodes were shown to be positive. I don’t know WHY I wasn’t offered a sentinal node biopsy. Unfortunately I can’t ask my surgeon because he has since died.
Have you discussed using any other painkillers with your doctor?
to all you BC ladies out there! I have just joined the forum this morning. I had my surgery in January and radiotherapy finished April and have been taking Tamoxifen since February. I have had no side effects so far but I do try to exercise a bit I go walking and play golf. I have never heard of any of the side effects that I have read on here. I’m worried!
I know that my Doc told me better to take it than not so we always think there advise is sound.
alia - that is great -there needn’t be side effects -I find it quite worrying that people seem determined to expect there to be- and some of the posts on here about SEs used to frighten the crap out of me before I started to take it- maybe I’m just lucky so far like you ? Maybe I’m just insensitive or something ?!
HI
I am on Tamoxifen and have horrendous side effects, nausea joint pain depressed bloating stomach pain to name but a few.
Th e oncologist says it’s not the Tamoxifen, but I beg to differ on that one cos I did not have any of these symptoms before I started on these.
Libby x
I have just had a full blood test done to see if there is a reason why I am having such joint pain and the results all came back negative so even the GP said it looks like it is the tamoxifen!! I’m going to see the oncologist in a few weeks and I will take the results with me to show him.
I can’t live in pain for 5 years so i’m really considering stopping the tamoxifen if the statistics are quite low between taking it and not taking it.
Im on tamaxofin, and I get terrible shooting pains in my legs, from the top of my legs down to my knees. The pain is sometimes so unberable I cant sleep.
I also have terrible trouble in the mornings too. Some mornings I also have to crawl around, because of the pain in my feet. I went to the docs he said I have inflamation of the tendons under my feet. ha ha dont know if this is true, Im seeing my oncologist in a few weeks time and will ask him what is going on with me. It realy is like being trapped in an old womans body, I cant even walk the dog far without having to hobble back.
Hello, I’ve been taking tamoxifen for two years now. My job is standing all day and when I come home I cannot sit down until I am finished for the night because once I have sat down I have to rock my body to be able to stand again. My knees are in so much pain and swollen all of the time. I gained 7 lbs a week during radiation. Now, I feel as if I am trapped in a 99 year old body and I just had my 50th birthday. Am I alone?
