Forum Discussion
Kerry-Lee47
7 years agoMember
Tamoxifen side effects
I’ve been on Tamoxifen now since November and been absolutely fine.
I was using a Generic brand Genox all good. The pharmacist gave me a different brand this time and since last week I have felt this crawling under my skin. I haven’t got hives just this irritating urge to scratch here there and everywhere. My mother is on letrazole as she too has breast cancer last year and unfortunately she has chronic idiopathic urticaria and has been talking to me a lot about her discomfort. My symptoms cocincidently occurred as I changed tablets. I feel like I’m losing my mind, could I have given myself this psychosomatically or is it a genuine symptom of the tablets. I’m also sweating a lot and up all night long needing a wee!! Sorry for oversharing Ive gotten through the Mastectomy the chemo and dealt with it all so well now I feel like this is gonna take me down :( has anyone else had this?
I was using a Generic brand Genox all good. The pharmacist gave me a different brand this time and since last week I have felt this crawling under my skin. I haven’t got hives just this irritating urge to scratch here there and everywhere. My mother is on letrazole as she too has breast cancer last year and unfortunately she has chronic idiopathic urticaria and has been talking to me a lot about her discomfort. My symptoms cocincidently occurred as I changed tablets. I feel like I’m losing my mind, could I have given myself this psychosomatically or is it a genuine symptom of the tablets. I’m also sweating a lot and up all night long needing a wee!! Sorry for oversharing Ive gotten through the Mastectomy the chemo and dealt with it all so well now I feel like this is gonna take me down :( has anyone else had this?
33 Replies
- kezmuscMemberHi Meredith_Star50
I haven't had leg cramps, lots of other things but not that one. I find the Genox brand the worst one to take. I've tried the others and even though they say there's no difference in brands there definitely is. I find the Novladex brand the most tolerable out of the ones I've tried. - I've been taking tamoxifen for around six months now, before that I was taking Femara, but found that I had lost bone mass so oncologist recommended I swap to Tamoxifen. I recently switched from Sandoz to Genrx brand as well only because the pharmacy was out of Sanoz. I'm now experiencing quite painful cramps in my legs at night. This combined with having to go the loo often is really interrupting my sleep! Has anyone else experienced cramping in the legs?
- EAAMemberMy expectations precisely.. No hassles. Confidence and trust and
walking away with calm. If only all pharmacists had a heart.
Thanks for the encouragement. - AllyJayMember@EAA, within my local area, there must be more than twenty, maybe even fifty pharmacies nearby. In Hornsby, my local shopping area, there are about ten. I use one and they know both myself and my husband well and by name. My Bearded One has a bucket load of different heart medications, and between all my meds for cancer as well as others, we reach our PBS threshold every year around September (about $1700.00 per couple) then drop down to about $7.00 per script...no concession cards. On the odd occasion they have not had the generic version of either of our meds, they have provided the branded product at the same price of the generic one as they have said that the fault was theirs. One time I had not realised that my prednisolone, taken daily for years now, had no repeat script left and that I would run out before being able to see my GP for another. They gave me the tablets anyway, and just asked me to remind them when I took it in, so that they could delete the first dispensing of it. He said as it was a regular daily medication, not something like valium or temazepam, he was happy to help me. Great pharmacy, great staff.
- EAAMemberOh dear! I wonder if staying with non generics has less unwanted
effects. A sister member has commented about the fillers in Generics. I have heard this as well. Generics are cheaper and
pharmacies are incentivised to sell them by the Government under the PBS. There is added cost to non generics. Our town has 4 pharmacies. 3 run by the same company. They limit non generics
and often out of stock, trying to convince me to take the generic brand. Pharmacies should carry sufficient stock to give you a choice. - TonyaMMemberSame thing happened to me- I was on Genox for ages and then it was out of stock so had to use another brand.In 24 hrs I was scratching and broke out in a rash. The only difference was a carrier chemical called titanium.
- EAAMemberI took Tamoxifen for 3 years until I couldn’t function due to the fatigue and brain fog. I stayed with the NolvadexD brand. No crawly sensations under the skin. I switched to Arimidex with added Sc Prolia six monthly. I’ve got my brain back. I developed cataracts due to the Tamoxifen..and thereby leads to another experience from
hormone therapy! Great if more precision was available to measure
oestrogen levels and prescribing doses more accurate to reduce
side effects. I haven’t read of such tests. - iserbrownMemberAgree with the conclusion! Changing brands can be challenging!
Glad you're sorted
Take care and best wishes for treatment - Lynn65MemberI’m 3.5 months into tamoxifen. I recently switched from SAndoz to Genrx brand, and didn’t really think about it, until I noticed that I was having transient burning sensations at different points in my body - one moment ball of left foot, next while later middle finger, then later on one ear, or part of forearm and so on. It felt like a mild hot flush, but in just one spot at a time. I didn’t have chemotherapy and this is the first burning sensations I’ve had like this.
It came on so suddenly, so I tried to think back to what had changed, and the only thing I could come up with was the brand of tamoxifen. I went to my GP, just to be safe - she said those symptoms were most commonly from diabetes or B12 deficiency, and based on my test results previously she didn’t think either was the case. When I suggested that the only thing I could think of was a brand change of tamoxifen, she was quite ready to believe that was possible. I switched back to Sandoz, and within 24 hours almost all of the symptoms were gone, and now three days later, no burning at all. Very weird. Just posting in case some one ends up having similar things happen. - kmakmMemberGood question @JulieVT11. I've been given the pills and sent on my way with nary an offer of support. It's up to us to reach out, to our breast care nurses, our GPs, here, and follow through any suggestions. My feeling is the oncs only want to see you if it gets to the unbearable stage and you're considering quitting.
I rage against the cage of it. I'm afraid it is what it is and am being dragged, resisting, to acceptance of that. Cancer sucks and, as infurating as it is, this is cancer treatment. The child inside me wants everyone to see my pain and give me sympathy and understanding. But everyone is absorbed in their own pain. The psychological challenges of being a human being are not to be underestimated. Thank goodness, and BCNA, that we have each other here. I see your pain, I acknowledge that it is real, and you have my sympathy. K xox