I have been taking Tamoxifen for a year but didn’t really have any serious side effects until now - lots of pains in the hips and extreme tiredness, plus uncomfortable hot flushes. I am losing sleep because of the hot flushes and the hip pains (possibly explains why I am so tired!). I am 50 and hadn’t reached the menopause before starting Tamoxifen. Has anyone else noticed a change in the side effects part-way through taking Tamoxifen?
Hello all,
I have been taking Tamoxifen for about 2 months and have the most horrible headaches every day… no other side effects. Any idea anyone if those will go away with time?
Jenny, I know some ladies here have had those joint pains and hot flushes. I hope you get some answers 
Take care
Sonia
Hi Jennyh,
I am unfortunately with you on this one. Several of my friends are too and have been for scans the lot and they show nothing, so seems to be the tablets.Which is of course great news that no sinister reasons for it. I am not tired, I have insomnia, they ought to mix us up and would get 2 working people
I have been taking nolvadex-d which is a brand of tamoxifen since Dec 2008 and I don’t have flushes and don’t get woken up at night at all. However, I am getting worse and worse stiffness and pain. My feet feel like I am wearing concrete boot in the morning and I am unable to get up and walk downstairs straight away. Really tricky if the dog needs to go out urgently. My feet just will not bend and ankles don’t even like the weight when I move from one foot to the other. After 5 minutes they are ok but not what they used to be. Putting tights or boots on on is terrible as my hip stops me from rotating my leg enough. I am also developing terrible pains in my heels and the doc thinks my achilles tendon might be peeling off my foot yuk! So off to podiatrist when they can fit me in. I think it is going to be the tablets though. No headaches for me even though I have been a big sufferer in the past. Sonia hope they go if not tell someone as changing brands of tamoxifen might help. Ask your chemist for another manufacturer to try.
Good luck
Lily x
Hi Jennyh,
I came searching the forum tonight for information on joint pain and am glad to see I am not alone. I have been taking tamoxifen for 8 months now, but only in the past month or so have I started to wake up to painful joints in my feet and hands every morning. Like Lily200, the pain eases after 5 or 10 minutes of being upright. Other side effects I have noticed is tiredness, considerable deteriotation in my eye sight and weight gain around the middle.
I do not feel my GP knows enough about my treatment so have opted to have a follow up with my oncologist soon in the hope he may be able to do something about it.
Wishing you all well
xx
Hi,
Jenny my eyes are badly affected too, the focus seems to have gone. Does anyone know whether it improves when you come off Tamoxifen as I am due to change in the new year?
Lily
Hi all,
I have finally had to call in sick this morning to work.I have been on Tamoxifen for 8 months and the side effects have gradually been getting worse.Stiff ankles and knees in the morning which wear off after I go to the bathroom,weight gain around the middle,ugh and the tiredness which I am struggling to cope with.Night sweats are improving,touch wood.No one understands how debilitating the tiredness can be,I just get told to leave the housework and rest!!!I am on the Wockhardt brand but I was worse on the APS brand.Hate to start the day moaning but i don,t have anyone else to moan too.Anyway moan over,time to shower and get dressed in my fat clothes.ha ha
Ann
Hi All
Soz for copying this from last post(height of laziness) but have been reading all your posts with interest as i am about to leave prescript in for tamox but was asked what brand i wanted APS etc as there is several and interesting to find some of you have tired a few! Can anyone advise me as to what brand they are on and how you are finding it please…x
I have a standing instruction with my pharmacist to give me APS as that gives me fewer hot flushes. A lot of people say the same, but not all - it’s an individual thing and you have to try the different brands to find which suits you best
I am on Tamoxifen too and have pain in my elbow and finger joints. I take Co-Codamil for the pain together with an anti-inflammatory. These drugs just about keep a lid on the pain most of the time. I have had blood tests to see if it is a form of arthritis but there is no indication that this is the cause of my pain so I blame Tamox.
On the question of eyesight problems - are you all aware that long term use of Tamox can affect eyesight. It is advised that patients taking Tamox should have an ANNUAL EYE TEST. Tell the optician about Tamox and they should be clued-up on the side-effects.
AlexG
Hi everyone - seems that these problems are very common! Thanks for the suggestions about changing brands. I’ll have to look at which one I have at the moment. I’ve kept all the packets for a year for this very purpose but when looking at them a few weeks ago noticed that for two months the pharmacist had given me 10mg a day instead of 20, even though the stick-on label said 20! I don’t really want to go down the route of taking more stuff to get rid of the side-effects. It seems as if we’re already bombarding our bodies enough, doesn’t it?
Good to hear from you all - good luck.
Jenny
Hi,
I was on Tamoxifen for 2 years but have recently come off it due to side effects. Uterine hyperlasia and hip pain. Due to have hysterectomy and ovary removal next week as still constantly bleeding and just for fun I’m having a bone scan thrown in aswell! Will it never end!
Malan
Had a bone scan last Friday and got the results today - all clear.
Whilst this is good news, I have no explanation for the soreness and pains in my chest and the other aches in my legs, elbows, wrists ankles and knees. Been reading about the Tamoxifen and shall ask to try another manufacturer when I have my check-up next week.
I went back to work after the chemo and radio, but have been off for the last 9 weeks as I am so tired - sleeping around 16 hours a day.
Back at work on Monday to see if I can manage part time.
If you’ve had the same I’d appreciate your comments?
thanks
Read your post on tamoxifen, i have been taking it for over 2 years now, i think symptoms are getting worse, sore joints in my feet, ankles and knees maybe flushes are a bit less often but still cant get down to my pre-cancer weight. Maybe thats to do with the menopause as i am 52 who knows my gp isn’t very sympathetic just says tamoxifen doesn’t cause any pain it must be the menopause!!! take care carolyn
Hi Ladies
I have been on tamox for a year now, and i have had joint pain in anckels knees elbow and back pain…it is a pain in the a…
lol…
never really had these problems before bc and tamox …really gets you down …but if it is helping to keep cancer away i will put up with joint pain…
i have found that my hair has got a bit thiner on top as time as gone on …which is upsetting…it came back quite thick after treatment…
so will see how it gos…
lv sal xx