Hi, I’ve been on tamoxifen for two and a half years and have had very few side effects - just hot flushes, which are better now than when I started. The last time a got my prescritpion it was not APS which I’ve had since tet start, but it was one made by CP pharmacauticals. Since taking these ones I’ve been getting cramps in my feet. Does anyone think it my be connected? Or am I just being paranoid!
I don’t think there are different Tamoxifens, because they all have to be the same formulation whoever makes them. I think that possibly the side effects develop after a time. I have been on Tamoxifen for 2 years and then transferred to Aromasin a year and a half ago and my side effects seem to be getting worse. I was feeling fine at first, then started to have pains in my joints and now I can hardly walk at times. Not everyone has side effects just the unfortunate ones. Recently my shoulder started to hurt and my hand on the side I had the mastectomy and also the other side is starting to hurt.
I would love to know if it will stop when I am off this drug!!
Hi Icemum and Zsuzsanna,
I have been on Tamoxifen for 8 months and get bad cramps in my feet. I liken it to been dancing all night in ill fitting stilettos. I hobble around for 10 minutes when I get out of bed and also after I have been sitting down for a while.
I have had xrays that showed up nothing, a lady on here mentioned Peripheral Neuropathy. I asked my Onc about this and she said that you dont get it on Fec.
I have done some research on Tamoxifen and have read a few similar stories to mine , so may be a rare side effect.
I must be a medically abnormal as I have scarring on my lung from Rads also which my Onc said is very rare.
Oh I wish I was common. !!!
Love Andrea xx
Hi Icemum
I have heard people say that the brand of tamoxifen CAN make for additional side effects. The reason being that the non active ingredients in the pill can be different. I know when switched back for these people (mostly back to the original brand) the new side effects disappeared. Worth a go!
Good luck
Roberta
xx
hi my breast care nurse told me it does make a difference and to note each time boxes change as different manufacturers do do different. i have only just started but noted the box this time is different from last time. so i have kept box. i have had very bad headaches this time and night cramps so maybe…ask your bc nurse or pharmacist…
Hi Icemum
I have been on Tamo for 18 mths now and can tell you that yes different brands definately give different side effects. I started with CP and was fine, next script i got was novladex and with this brand i could not go to the gym because the pains in my legs were horrendous i was more tired and just felt totally lousy.
Since changing back to CP i am back to normal feet a bit stiff when i get up but when the crack its ok lol.
Tiredness well i can cope with that.
Hope you get things sorted.
Take care
Allison x
Thanks so much for all your comments (I’m new to this).
It’s really helpful realising that I may not be totally paranoid - and I will ask to switch back to my original brand and see if the foot cramps go. I’ve had them when driving a couple of time which is quite scary but I’ve never had cramp anywhere until now.
Thanks again,
Anne.
Just to say whilst on tamoxifen i had bad side efects. Was changed to nolvadex D and they have almost gone(some hot flushes, sweats remain)
Apparently the cheaper brands use different bulking agents. I know this brand is more expensive as my gp practice queried the px and i was told i may have
to pay for a private px. Fortunately this has not happened.
Best wishes
Ann x
Hiya,
I have absolutely noticed a difference between different brands of Tamoxifen. I started taking them on Nov 1st and had the APS brand. I was troubled with very few side effects. A couple of months later I picked up my next prescription and it was CP Pharmaceuticals brand. Then I developed horrendous side effects, so much so that I had to switch back to the APS brand almost immediately. My pharmacist and gp both said they have known lots of women not respond well to certain brands. Apparently although the basic ingredient is the same throughout, its what they mix it with that can cause the probs.
I always insist on having the APS tabs now, better the devil you know!
Take care,
Kelly
-x-
Just goes too show that everybody has a different intolerance to different brands … guess its trial and error for all of us…
Good Luck
Allison xxx
Hi
I started on tamoxifen Aug 06, my frist 3 prescriptions were fine (although different brands) then my fouth, different again was horrendous, sweats, really bad dryness down below which made sex really painful and would make me bleed, aches and pains like an old woman (I was 38) I had a chat with the pharmicist in Boots and told him I never wanted that brand again, he told me the only for this was to insist on Nolvadex D so that I could be assured of the same brand.
My Gp went along with it although sceptical at first, and the only side effect of this one is larger hips, all the other effects have gone. Am currently trying to walk off my hips, but feel much better on this one. My GP was surprised by results and said he has taken note.
Debbie
Just bumping this up for Bubs to look at!
Thanks quarteter!
After suffering Tomoxifen for 8 months I had everything from aches and pains in my legs arms and back along with the hot flushes I asked to be taken of them and am now trying Femera hopefully it will be better anyone changed to these and have the side effects been any better.
Debra
Hi There,
For the last 4 months I,ve been on the Generic brand of Tamoxifen and my hot flushes stopped and periods came back and felt much better.
Got a new supply last week on the CP brand and hot flushes have started again and are keeping me awake, My sex drive has diminished also. I know that if I go back to Gp or Pharmacy they will try to fob me off and tell me they are exactly the same, But I have looked at the leaflets that you get with them and apart from the 20mg of Tam they both contain other things and are both different. I have started one box but have another unopened so i might ask my Pharmacy to swap.
Isnt it a pain. And why dont they all have the same things in?
Love Andrea xx
Hi,
I have been researching this as I am about to start on Tamoxifen. The active ingredient is exactly the same in all of them but as someone else mentioned the bulking ingredient or coating is different. Nolvadex-d is a brand of tamoxifen that for most people reduces the side effects giving far fewer hot flushes and other changes like far fewer blood clots, which might be a consideration dependoing on what is in your family healthwise. Of course it is more expensive and that is why you don’t automatically get it. I have requested nolvadex-d from the start and if you can persuade your onc, he gives the first prescription so then the GP follows on from that. My research nurse told me that the Boots own brand of tamoxifen has been much better for many of her patients and suggested that if I had not got nolvadex I collect mine from there.
Would be very interested to hear how people get on on nolvadex as I definitely react to even different types of paracetamol, mainly their outer coating
Lily
Hi Lily,
I discussed it with onc, and I think she thought there was a real risk I’d stop taking it unless I got Nolvadex …already being a size 18, I didn’t think the weight gain would be tolerable. Once onc prescribed it once, the GP was right on side, fully understanding that Nolvadex causes fewer side effects. I’m really doing very well on it and am glad I had the “chat” with the onc.
All the best to you - dig your heels in, explain your reactions to other drugs and get what you want.
Sue xx
Hi,
thanks Sue. I told my onc that even 5 extra flushes would be more than 8000 over 5 years and perhaps it was putting women on tamoxifen that was causing global warming. He laughed so much he agreed to nolvadex straight off. So just hoping it is good for me when I start in a couple of weeks. My GP says I can have anything I want -promises!!!
Lily
Hi all, so glad to read your discussion about different brands of Tam because i am thoroughly sick of feeling about 90(am 47)and itching so much i sometimes want to tear the skin off! Myself and a friend both have feet a size bigger than we used to, and she rotates her shoes so that her feet hurt in different places! Also the weight gain is mortifying when you know that it isnt related to your diet in anyway whatsoever. I am definitely going to request a brand change next week!
Hi everyone
I started taking Tamoxifen in November 2007. I was given the ones made by CP Pharmaceuticals and I found they made me feel nauseous. I took them for two months then I asked my gp if I could try Nolvadex - I was expecting him to say no but he gave me a prescription for three months to try. I started taking them about two weeks ago and I haven’t felt sick or nauseous since. I found that I couldn’t even have a glass of wine while I was on the other brand because it made me feel very sick. I have been able to have the odd glass of wine with no ill effects.
I am not sure if is a coincidence (maybe I just got used to the tablets) but I am going to ask the doctor to prescribe Nolvadex in future.
Love to everyone
Maude xx