Tamoxifen and extreme itching

[VividDeer]

Hi all.
I started tamoxifen just over 2 weeks ago. I was already hot and itchy in the boob that had radiotherapy. Then the itching started all over my body especially at night. No rash. Very extreme itching that doesnt respond to antihistamines. I cant sleep. I've been in tears with it. It's not just a case of some E45 and carry on.

GP checked my bloods and not liver damaged thankfully.

I want to know if anyone else has had this and the brand/ manufacturer. Mine is the wockhardt. I stopped it 3 days ago and no relief yet. I won't be taking that brand again.

I’m about to start my Tamoxifen in a couple of weeks (last radiotherapy next Monday). I’m dreading the side effects from what I’ve read. I’ve no useful advice for you, im sorry - just didn’t want to read and not send you good wishes to help get through this crap. I was diagnosed with breast cancer in early November and had my lumpectomy in Dec and just about to complete radiotherapy next week.

Can you ask for review of the medication? I don’t know anything about why certain types are prescribed, but I take letrazole and have no significant side effects.

@LoudSnoringDog hopefully you won't get any side effects. Many people dont. I was fine apart from my skin and my period was lighter, so even a benefit there!

@onlyoneoftheregimentinstep I cant take that unfortunately as pre menopause. Definitely will be in touch with my oncologist for other suggestions. I think the first step is to try a different brand.

I was worried about side effects as that's all you read about. I didn't have any side affects at all. On it for 10 years. I think the reason why there are more negative side effects mentioned is that all the people that don't have any problems with it don’t go on any forums.

I hope fellow breast cancer survivors will be gladdened to hear that I have been on Tamoxifen for nearly 10 years. The only side effect I've had is the occasional hot flush.

I've had a variety of brands over the years and find them much of a muchness.

I wish those at the beginning of the treatment well and hope there is no return of the cancer.

Thank you. Positive stories also welcomed.
Of course there is a chance my symptoms are caused by something else such as a response to the radiotherapy (although the hospital says no, the gp thinks yes!).

I had extreme itching on my scalp as soon as I started taking Tamoxifen. I ended up with sores on my head from the itching. It was worse at night due to the pressure of the scalp on the pillow - and I couldn’t sleep which wrecked me. I had to stop taking it.

@loopylocks thank you for your information. My scalp has itched and behind my ears - aswell as everywhere else.
I've done a calculation this morning of the benefit of tamoxifen on an online tool. (Legit , uni of Cambridge). Results were interesting.
Radiotherapy did not increase my survival rate as much as I expected considering how brutal it it. And tamoxifen not a huge amount either.

@loopylocks do you remember how long it took to stop itching after ceasing the pills? I'm counting the hours until this improves!

It stopped very quickly - maybe a few days or a week at most.

When did you stop radiotherapy? That can cause itching post treatment, especially first 4 weeks after. I was also told chemo effects peak 3 months past stopping so it's hard when you first go on Tamoxifen to know what is causing what. I would speak with your oncology team at hospital.

I think Tamoxifen stays in your system for 2 weeks but just a fact I may have miss remembered.

I don't have much issue with it and started in 2022.

@Squirrelsandhedgehogs I'm 2.5 weeks post radiotherapy. The burns have just started improving. Radiotherapy department are adamant its not the cause although I have read about a syndrome where the radiation rash spreads. I have no rash though so doesnt quite match.
Would have made more sense to recover from radiotherapy before starting a drug, but was told to start tamoxifen the next day.