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’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.

Good 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

Hello ladies, just putting my experiences with Tamoxifen. I'm on it since October 2019. First 2 months were pretty bad with cramps and this funny electricity, needles like pain, …. I felt like drug addict who can't keep hand still because I had to scratch all the time. After 2 months I tried the brand Novaldex -D and I'm absolutely back in normal life. What a MAJOR difference. No pain, no itchiness, …. went back in my F45 which helps a lot too. So definitely, change brands if you have bad side effects, that's my experience. Good luck to everybody. <3

There isn't any difference in the active ingredient, but the binders are a bit different. I wouldn't expect chemist staff to know that and for most people it doesn't seem to make much difference but it seems to for some.

Dory65 said: Thanks @Blanka I'm a few days into taking Novaldex-D. Experiencing poorer quality and quantity sleep than usual, but not sure if that's the cause. Really vivid nightmares! So tired!!! So much to do at home, at work...elderly parent...needy adult child... My body work really good with Novaldex -D (yes sleep is a bit issue but I don't let to get on me) and if I need nap even afternoon, I do it! Changed priorities too - I'm the first now! and I learnt to say NO! Funny is how kids forget quick, that their mum was sick but I don't so planty changes were made at home :smiley: and they don't like it (but I don't give a …..)And exercise helps a lot too. So the morning is mine. I'm going to gym before kids are up. Helps me fight a lot the side effects of Tamoxifen plus makes you nice tired at the evening to go in bed.

Tamoxifen side effects | Online Network

Silba
Member
6 years ago

I have been on Tamoxifen since December 2018, skin crawly feeling, bruise really easily , terrible night sweats and hot flashes, brain really foggy haven't been game to try any of the generic brands , my hair is very thin as well , it was coming back thicker than normal but now it's going really fine.

I asked my oncologist , I have had radio as well as chemo as surgery I am also on prednisone since February , so he thinks it could be a combination of the two, joys of joys.

So for me having to take all this medication just gets me down too, I hardly ever took Panadol before BC now is like a pill regime, hate every minute of it.
Mira
Member
6 years ago
Hi @Kerry-Lee47 , when I was on Tamoxifen I found that different brands affected me in different ways. I've never had the symptoms you are describing though. If you had a brand that you weren't getting a lot of side effects on, I'd shop around and see who stocks that brand so you can stick with it :)
Afraser
Member
6 years ago
I suggest you switch back to
the first brand before doing anything else. Yes it may be a reaction to the active ingredient but it may also be something in the binders (the other ingredients made to bind and shape the pill) that you are reacting to. Some of the additives may cause an allergic action, that you may be unaware of. It's not uncommon for people to get some unpleasant reactions with different brands. It may be worth switching mid package, just to check before seeing your oncologist, which is the next step. Best wishes.
Kerry-Lee47
Member
6 years ago
Thanks Mira, I think your right it is one of life’s bizarre coincidences, I’m going to scout around and get my previous brand. The active ingredient is the same but something else in the fillers etc is probably affecting me.
Kerry-Lee47
Member
6 years ago
Thanks @Afraser and Silba bless you it’s so good to have feedback from people who have been there. Much appreciated
kmakm
Member
6 years ago
The feeling of insects crawling on your skin is something that can happen in menopause. I had it briefly as the estrogen began to be leached from my body by Letrozole. After a few weeks it passed, but my skin is now dry (which it never was before) and often itchy as a result. I am also now bothered by urticaria, mostly a night. I f******g hate BC.
kezmusc
Member
6 years ago
Hi @Kerry-Lee47,

I had the same but in reverse. The Genox was bloody awful for me and the Novladex a little better. The brands do seem to make a bit of a difference for some.
Milly21
Member
6 years ago
I think it makes difference too,I’ve had about 3 different brands of tamoxifen now,the staff in chemist just look frustrated and say there is no difference between brands when I asked.😂
Afraser
Member
6 years ago
There isn't any difference in the active ingredient, but the binders are a bit different. I wouldn't expect chemist staff to know that and for most people it doesn't seem to make much difference but it seems to for some.
Milly21
Member
6 years ago
Does anyone else on tamoxifen get stiff swollen ankles? Wondering if it a side effect or something else, especially in morning when first get up?