Tamoxifen side effects

Hi, i’m new to this site and have read through as much as i can. Its very reassuring to find out that like me others are suffering the side effects of Tamoxifen. I’ve been taking it for 3 months following lumpectomy, chemo and radio. Fortunately I don’t have hot flushes depression or headaches but do suffer badly from joint paint in my shoulders, back, hips and knees, especially in the morning and after sitting. I was unaware that Tamoxifen was made by a variety of drug manufacturers and am interested in anyone’s comments if they have changed from one manufacturer to another and shown improvement. Also does it make any difference to side effects if you take Tamoxifen in the morning or during the day rather than at night? I was initally told by my Onc that my body would become acustomed to Tamoxifen within 6 months. From what I’ve read this does not seem to be the case? I’ve tried paracetamol and ibuprofen but it makes no difference to the joint pain. I have just started taking a daily dose of 50 mgs of Diclofenac to see if that has any effect. If you have been affected by any of the above or can offer any advice I’d love to hear from you.

Posted on behalf of new user Anne:

Hi Widgie I am also new to this site but have been on Tamoxifen for 2 years now. I suffer from terrible sweats and have joint pain and very bad morning stiffness. I asked about changing to Arimidex but my consultant did not want me to do this as he said Tamoxifen was
best hormone therapy for my cancer. Fed up getting ready to go out, make up on, hair done but by the time I am out the door the sweats have started and I look like the Joker. I have just bought a ladycare magnet and hope that this will make a difference to the sweats will keep you posted.

Anne

Hello Widgie & Anne and welcome.

I’ve been on tamoxifen for just over a year now. Initially I had 2 lots of generics (APS & then CP) and then my pharmacist suggested I try Nolvadex. Most of the SEs disappeared leaving a bit of joint stiffness, some night sweats but only mild daytime flushes and tiredness. I’m now back on generics (last 2-3 weeks) as Astra-Zeneca no long make Nolvadex in the UK.

I’m back to headaches and increased joint stiffness and hot flushes as well as leg cramps (which I didn’t have before) but live in hope that they may settle down…! I got APS again this time and I’m not sure whether to aim to get it again and see if I settle down with it or to try to get the other brand.

None of my SEs are horrific, just rather tedious -especially as I thought I was doing so well with the Nolvadex.

I’ve always taken mine in the morning but my onc said that if I was finding the hot flushes during the day were getting a bit much I might want to try taking it at night.

Eliza xx

Hi Anne and Eliza nad thanks for your interesting posts. I’m new to this site so and learning the jargon. I presume APS and CP are drug manufacturers? I checked my tamoxifen and they are made by Wockhardt. Not sure if that makes any difference to SE? My symptoms are not as varied as as yours but I’m finding the joint stiffness hard to deal with and having found this site now realise that I could well be stuck with it for however many yeasr I’m on Tamoxifen. Does anyone know why Tamoxifen affects the joints, there must be a medical reason but I’ve not found one yet? If anyone has any remedies they feel makes joint pain any easier then please let me know. I currently take cod liver oil and glucosamine with condroitin and keep as mobile as possible I’m also going to adjust the time I take my Tamoxifen by slowly bringing it forward so i end up taking it midday instead of bedtime. Please feel free to add anything you feel may be useful, its a comfort to know that there are others, like myself who having been through the trauma of surgery, chemo, radio etc then find its not all plain sailing.

Further to my post earlier today I came across a site called Imaginis which i think is American. Having read through many of the posts there I came across this website which makes interesting (though not easy) reading. Its is very technical and some of it difficult to understand but it does however acknowledge the known side effects of Tamoxifen, many of which seem to be dismissed by GP’s and Onc’s as imaginary.

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The link did not work so please copy and paste as below

erc.endocrinology-journals.org/cgi/content/full/11/3/523

Hi
Just thought i’d put in my tuppence worth of knowledge re Tamoxifen side effects … it may be of interest or maybe not!
After the tamoxifen drug Novaldex D was discontinued (I had hardly any side effects while taking this brand)I decided to take as many different brands as I could find in order to identify the one which suited me best.
APS - this brand caused me to have a series of pinprick like sensations all over my body and was very unpleasant
Generetics - these make my joints VERY sore and stiff and actually caused some swelling of my finger joints
CP pharmacheuticals- made me very stiff and sore
Wockhart - this is the brand I have chosen to stick with and actually now ask the pharmasist for this brand only. It seems to be the best choice for me although it did give me an upset stomach initially that has now settled down.
It really does take you to try different brands as you will know within a few weeks what side effects you will have with each one.
Hope this has been of some help
Carol x

Thank you, Widgie. I ploughed my way through it all and agree reading it is a bit like wading through treacle! Why do these boffins use twelve words when one would do? It was interesting that they do acknowledge side-effects in the article that doctors and oncologists sweep aside.

AlexG

Hi to all those on tamoxifen. After my good news yesterday about not having to have chemo I’v been looking at what I can expect from taking tamoxifen. And boy, I’m back to feeling blue again. I tossed and turned all night last night, guilty at feeling low again when I’ve had good news and angry becuase I want my life back the way it 4 months ago.
I’ve always been a risk averse person and now I’ve looked at the side effects I’m not certain I want to take this drug. After all, my mx has got rid of the cancer and this drug is going to reduce the chnaces of it occuring in my other breast. My biggest worries are hair thinning - I have got incredibly thin hair which I masterfully try to rearrange over protruding ears, and cararacts - I have an absolute phobia about eyes and eye procedures, can’t bear looking at pictures of eyes although having anything poking in them. Minor cosmetic worries I know considering the hell this disease causes women to suffer but my body image is incredibly low at the moment and having to worry about my hair as well would be too much. Also, concerned about cancers of endometrium and uterus, although the stats are low and the loss of libido won’t go doen too well either. DVT and strokes seem like the icing on the cake!I’m perimenopausal anyway, but have only just started night sweats and irregular periods.
I just don’t want to take it now. Did anyone else have the same feelings? Is anybody else suffering from hair thinning? Aplogies to all you ladies suffereing from hair loss from chemo, I feel very insensitive, but this is a real concern for me. My lack of hair thickness has been the constant bane of my life to date and I just can’t afford to lose any more. Wouldn’t annual mammograms for my other breast be good enough? Annys x

Hi Annys

Please feel free to call our helpline where you can talk through the concerns you have about treatments and side effects, the line is open weekdays 9-5 and Sat 9-2 and our team are here to offer you further support and a listening ear.

Take care
Lucy

Hi Annys

I’d just like to say that you might consider starting the tamoxifen because you always have the option of stopping if the SE are too much for you. Everyone seems to experience it differently. I’ve had a lot of the more common SEs but it didnt affect my hair.

Re joints - I used to have aching limbs at night for a long time - at some point this SE seems to have disappeared.

However, I’ve just experienced a reoccurence of various SE due to switching from Nolvedex D.

I take it early evening which seems to be the best time for me, too late and it can keep me awake.

Hi Annys,

As Jenny29 says why don’t you give the tamoxifen a go? I had exactly the same feelings as you and put off taking it for 3 or 4 weeks but I’ve been on it for 3 years next month and would not want to stop taking it now as I feel it’s helping my chances of not having a reccurance.
Perhaps I am one of the lucky few in the fact that side effects have been minimal - hot flushes - a pain but can be tolerated with layers of clothes to be continually taken off and put on and a possible slight deterioration of eyes when reading but this had started before tamoxifen so could be due to age (I’m 47 now). I didn’t have chemo - had lumpectomy and radiotherapy and of course the tamoxifen. I have just had my annual (now 3 years) checkup with a clear mammogram. My hair has not thinned but I do still have regular, heavy periods - not a problem says my consultant- easy for him to say!

Give it a go for a while otherwise you’ll never know. Sometimes people like me who haven’t suffered too badly with side effects don’t always reply to posts on this site as we tend to use it to talk about our worries and it can be a reassurance.
Anyway I hope you go on ok.
Love Shorty xx

Thanks for your replies. I have decided to start it - just being slightly hysterical and looking at everything out of persepctive. Still not too sure when the best time is to take it. Early pm maybe?

Annys x

Hi Annys,

Pleased you are going to give it a go. I take mine at breakfast. Don’t know if it makes any difference.

Hope all goes well. Let us know.
Shorty xx

I also take mine at breakfast as I find this easiest to remember regularly. I was also really worried about side effects but two and a half months in I am not finding it too bad. Just get a few hot flushes in the night, but I bought a Chillow and if I get really hot, this helps to cool me down. I am hoping I don’t get worse side effects over the passage of time, but I am just taking each day as it comes.

I have been on Tamoxifen for just over 2 years now, and for me the worst thing is the hot flushes. Some days they are constant, and it is SO embarrassing when you are dripping! I have a bit of joint soreness more than pain, especially in my elbows first thing in the morning. I did initially have terrible problems with my feet and ankles, but I’ve managed to lose some of the stones that I piled on with chemo and it has improved. I can’t now wear flat shoes for any length of time though.

Reading your posts, I think I have got off quite lucky, but am fed up with the sweats. A friend has recommended a cream called Serenity and I wondered if anybody knoew anything about it? It’s a natural progesterone cream and it is supposed to work wonders. I am very loathe to put myself at any risk of taking anything, and have decided to ask my Oncologist on my next visit.

I would be interested in hearing views on this please?

Heather

Hi girls,I just thought I would jump in ,if you don,t mind,and tell you about my experience with Tamoxifen.I have tried a few brands and decided on Wockhart.It seems to be the best for me though I still have night sweats,but Chillow pillow helps with that.I have ankle stiffness in the morning but it is easier after going to the bathroom.I am willing to put up with all the SE cause the alternative is crap.
Good luck to you all on Tamoxifen.I find the best time to take it is early evening,but it is trial and error.

best wishes,

Ann xx

I am taking Wockhart and have no real side effects apart from chronic but random water retention which clears itself in about 3 days! I blimp up then out and it actually makes 3-4 pounds difference as i am dieting and keeping an eye on my weight.

good luck to everyone else
oh i take mine in the morning with evenin primrose tablets
S
x