Hi everyone,
I am wondering how everyone else is getting on who have recently started tamoxifen.
I started 2 weeks ago and my whole body aches nearly as bad as tax!!! Also as well as the hot flushes every night I am retaining fluid like there’s no tomorrow. I wake up in the morning and my eyes are so swollen I can barely see, my fingers are also swollen. By the end of the day it’s down to my feet and ankles.
Is this normal??
Any response greatly appreciated.
Thanks Sam xx
Hi Sam
I started tamoxifen 4 weeks ago and have been suffering with terrrible aches and pains all over my body, no swelling just pain, and horrible night sweats! I wonder if the side effects are worse in premenopausal women? I would love to hear if anyone else has had similar side effects.
Michelle x
Thanks Mickey24. Im sorry your sufferring too but it feels better knowing im no alone.
Sam xx
Tamoxifen is only given to pre-menopausal women. After menopause we are switched to arimidex or similar. I have been taking Tamoxifen for 40 days now and Zoladex injections started 5 weeks ago. At first I felt very bloated as if I was retaining water - thought I’d blow up like a balloon, especially around my middle! - but this has settled down now.
Luckily, touch wood, I’ve had no joint aches or hot flushes. Several ladies on here have said that different brands of Tamoxifen have different side effects for them, so maybe you could ask your onc, Dr or pharmacist to change brands to see if that helps? So far, I’ve only used Wokhart - given by hospital pharmacy, they gave me 3 months supply! I hope when I have to go to my local chemist for replenishments, that they give me the same brand, just in case!!
If you look back through the threads on Undergoing treatment: hormone therapy, you’ll find many other ladies experiencing the same side effects, if that will make you feel better!
Hi
started Tamoxifen nearly a month ago - just a few hot flushes and yes the aching of the joints like I’ve run a marothon, my hair has also been coming out in handfulls.Started phsysio and hydrotherapy last week as having problems with movement in my arm following mx and snb 9 weeks ago - keep crying not sure if this is because of the Tamoxifen or because I was doing really well after the surgery, made sure I did all the exercises and going great guns until my arm seized up resulting in having to do the physio etc or finally realising what has happened and that I have a further operation next year to complete the reconstruction and the uplift and that until then I have to be lopsided. It doesn’t help that friends work colleagues keep saying I look well - it makes me feel guilty for not being back at work (I work in the emergency services so woul;d be pretty useless with a arm that has no strenght in it at the moment!!) - It does help that I am not the only one experiencing the side effects - hopefully it will all settle down once the body gets used to it. Still trying to keep positive 
Hi
started Tamoxifen nearly a month ago - just a few hot flushes and yes the aching of the joints like I’ve run a marothon, my hair has also been coming out in handfulls.Started phsysio and hydrotherapy last week as having problems with movement in my arm following mx and snb 9 weeks ago - keep crying not sure if this is because of the Tamoxifen or because I was doing really well after the surgery, made sure I did all the exercises and going great guns until my arm seized up resulting in having to do the physio etc or finally realising what has happened and that I have a further operation next year to complete the reconstruction and the uplift and that until then I have to be lopsided. It doesn’t help that friends work colleagues keep saying I look well - it makes me feel guilty for not being back at work (I work in the emergency services so woul;d be pretty useless with a arm that has no strenght in it at the moment!!) - It does help that I am not the only one experiencing the side effects - hopefully it will all settle down once the body gets used to it. Still trying to keep positive
i am menopause and im on tamoxifen only been on them a mouth get the hot sweets but no achs and pains but had the wockhardt and just started me the new pack and thy are aps ao let see if thy make eny diffrence
I have been on tamoxefen since march, apart fron aches and pains and night sweats I have bad itchy legs,and patches of excema on my legs, only on my legs.Spending a fortune on creams and piriton to help.
Ive been taking it for5 weeks approx, hot flushes overnight but they arent that bad for me, my lower limbs havent stopped hurting since i had taxotere so ive not noticed any major increase in joint pain. My oncologist prescribed my diuretics to help with my swelling feet and ankles but only been taking these a week so far.
I also use the wockhardt ones
I started Tamoxifen (pre-menopausal) a few weeks ago and the only SE’s I notice are some hot flashes which don’t bother me and some yellow’ish discharge down below. Told onc she said it’s fine and just hormonal. i was given the APS one by the way.
do eny of u find the tamoxifen give u bad mood swings as my kids have said thy have noticed how up tight i get and snappy the last few weeks
I have been on Tamoxifen since Feb 2011. The biggest problem for me has been the weight gain. Almost two stone! but it seems to be all around my middle! I do not eat any differently than pre-diagnosis and I still walk as regularly as before too.
At the beginning my joints ached terribly and for the first 4-6 weeks I felt a bitfuzzy headed but both these se’s seem to have disappeared - although I started taking cod liver oil capsules and have continued since, so whether that is helping the joints I’m not sure.
The hot flashes were quite full on to begin with but they have settled now. They seem quite random these days.
I too am on Wockhart and the one month I was given Generics was a nightmare! So I knew it was the change of brand. I spoke to my Pharmacist & she said that they are all ‘bulked’ out differently depending on the brand, so obviously something in the Generics didn’t suit me. I went back on Wockhart & things settled back very quickly.
Emotionally though, it’s a bit of a joke now as I cry and get emotional over stupid stuff that would never have bothered me before. Even just normal everyday TV programmes can cause the water-works! I’ turning into a softie! 
Karen x
Tamoxifen is given to pre and post menopausal woman. I was post menopausal when I was given it three years ago.
en.wikipedia.org/wiki/Tamoxifen
I started with terrible headaches, nausea, night sweats and weight gain. After three months my ankle joints, finger joints and knees were very painful and I had trouble walking. I took anti nausea tablets as and when needed - on and off for two years. I had regular blood tests to check for kidney/liver damage and also blood pressure etc., I also had terrible leg cramps at night - started drinking Tonic water for the Quinine and this has worked wonders. My mind was very confused for about 6 months but this settled and although I no longer teach I realise the stress that would have been placed on me would have brought nothing but unhappiness. I just have a part time job with little stress.
Exercise: put my ipod on and walked everywhere - this kept me flexible and strengthens the bones. I started going down and then back up the stairs as that was all I could managed - now I go miles. This has also helped with weight gain.
Headaches went after three months, nausea has all but gone and ankles are very much a thing of the past. I am three years down I still struggle with weight although I am very active. They may change me or not but I will keep it all in perspective, attend all the smears, blood tests, eye tests and any other test, thank my lucky stars I am alive to feel this pain and watch for all those little tell tell signs. Find your solution ladies, one that works for YOU and share. Much love all xx
I started tamoxifen in may2011, felt terrible for a couple of weeks, had night sweats for a couple of months, aching joints for a couple months, I now feel great all the side effects seem to have dissapeared!!! I do take them at 6am every morning, Girls, stick with it. it does get better!!!
They gave me three month’s supply of Wockhart Tamoxifen at the hospital so I have only just been for my repeat prescription. I went fot the repeat just as I started the last pack, just in case they changed the brand at my chemist and I had side effects, (so I could swap back without waiting a whole month!) I was relieved to see that the Chemist has given me Wockhart too, so let’s hope they stick to that one, as I have no probelms on it.
Occassional very mild flushes - or warmer moments and no joint pain. But I was already taking daily cod liver oil and I MIGHT be taking daily anti-inflammatories (REACT trial - they could be a placebo!) so that may be preventing the joint pain. Who knows?
My hair seems a lot drier, I’m finding I don’t need to wash it so often. Tiredness still a problem, even though I am sleeping quite well at night.
No need to spend a fortune! prescriptions are FREE for 5 years!
Hi Im 46 been on Tamoxifen for about 3 weeks now…the hot flushes arn’t as bad as I expected but Im very irritated …I think the kids are scared to speak to me …lol.I had a couple of days last week where I couldnt stop crying it was awful.I am still having Radiotherapy at the moment so its early days for me …a lot goes on doesn’t it when you have this awful diagnosis.Im sticking with it and hoping everything will settle down.
Take care
Kate x
Well this Tamoxifen doesn’t seem too bad so far…thought it was making me feel a bit PMT-ish but got my period on the exact correct day for my cycle and now feel a lot better. So it turns out it was just ACTUAL PMT combined with my mind working overtime to put everything down to a ‘side effect’. Got to laugh.
well keyfeatures the very same has happned to me today…I got my firt period since being on Tamoxifen so like you my awful moods were probably pmt’s lol…we need to calm down …hahaa
Tamoxifen can increase cholesterol levels? Does anyone no if this is true as I am taking statins to lower mine, should I bother or if it does increase it and I don’t could it be even higher?
I also am on Wockhalt, got 1st pk from hospital, I am never sure if things that are happening are due to Tamoxifen or not, I used to get leg cramps in the night before, they come and go, but seem to be back again, had probs with knees before and had physio, seemed to help, but have started up again, could it be due to not being at the gym for a few months, maybe getting back would help? Also before I started getting hot flushes now and again, dr said prob start of meno, so not sure if that or Tamox? Last w/e we had bbq in garden and I have about a dozen bites on my legs, but have also been getting a feeling of insects crawling on my legs and arms, even though they are now drying up?
Its hard to decide whether the Tamox is the cause or not?