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
- Dory65MemberHi @Annie71,
Taking the Tamoxifen and antidepressant together first thing from now on, but have experienced only a slight improvement in sleep. See my comments in Exercise and Eating thread! What a rotten weekend. Whole body aches and pains kept me in bed all day Saturday. The result of 10 days of the drug and a sudden drop in estrogen, presumably. I went to the gym Sunday a.m. to try to shift the pain, and took combined paracetamol and ibuprofen. Then, being tired, with brain fog and a very short fuse - I ended up flying off the handle and had a fight (just some harsh words) with my dad. Mood swings! My son says I was like the scary vengeful ghost from The Ring.
The good news is that it didn't last. Still have sore joints, but not as bad. Still want to sleep at about 1pm. Still not sleeping properly at night - but I am able to function at work pretty effectively. I hope she (above) stays in her well. I'd like to keep my job, friends, sanity etc. - Annie71MemberThanks @Dory65! I’ll be interested to hear how you go. So far I’ve noticed that if I take the pill at 7am ish with other medications then I get restless legs in the evening. If I wait til mid morning, that seems less of an issue.
- Dory65MemberYou go girl @Blanka!
Hi @Annie71 , I took the tablet this morning instead of last night. I'm conducting an experiment on myself! Took the antidepressant and Novaldex -D with breakfast. I was alert all day. I'm hoping I'll be able to sleep better tonight. - Annie71MemberHi All,
any suggestions ons on the best time of day to take Tamoxifen? Just started on it today and keen to minimise the side effects if that can be done! - BlankaMember
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 …..)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...
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. - Dory65MemberThanks @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... - BlankaMemberHello 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 - Dory65MemberHi Kerry-Lee47 ,
did you return to using the generic brand Genox? Did your symptoms improve? I'm starting Tamoxifen soon. Wondering what brand to ask for - with the least chance of side-effects. - Marg75MemberI started on (Sandoz) Tamoxifen 20mg a year ago and I was OK initially and then the side effects kicked in. I also suffer from fibromyalgia and osteoarthritis in my small joints (hands, feet) and I ended up in agony all over my body. I had shocking muscle cramps in my calf and thigh muscles at least twice a week - they are so very painful and difficult to 'counter stretch' in the middle of the night. I then had a 6 week break and started taking 10 mg and although life was a bit better, I still could barely function. With my specialist's blessing, I am now taking 5 mg/day and I am only just managing to have a reasonable life. The cramps still happen now and again, my joints and muscles hurt, but a bit less and I will try to stay on this dose for as long as possible. Even with this low dose I am getting hot flushes and especially in hot weather or when I get agitated. I am desperately hoping that this low dose will still have some effect re. lessening my risk of a breast cancer recurrence.
- Hi kezmusc,
Thanks for responding. Coincidentally, I swapped the Genox brand for the Nolvadex yesterday. The pharmacist advised that it's the original brand. Hopefully, it'll make a difference because I don't think I can stick it out with the night cramps!
Take care of yourself and all the best.