Effects of coming off tamoxifen after 10 years

Hi, I came off tamoxlfen in July after 11 years, I’ve not had any of the many other side effects mentioned. I am 58 and tamoxifen through me into menopause at 46. Since coming off tamoxifen I feel permanently exhausted and have what I can only describe as brain fog, I can also burst into tears in a second at ridiculous things. I was wondering if anyone else has felt like this.

  • I'm just reading this now and so grateful to everyone for posting! I started Tamoxifen in June 2022 after chemo and had no side effects for ages. Then last year I noticed my sleep was awful, I felt wired and constantly tired. I noticed a fine tremor and increasing brain fog. Came to a head 7 weeks ago with what felt like debilitating flu and light headedness/dazed feeling so I haven't worked since then! Bloods showed nothing and even saw Endocrinolgist. Came off Tamoxifen and cancer nurse I called knew very little about withdrawal symptoms but said I'd know if Tamoxifen was responsible for my symptoms after 8 week stopping it. Stopped it and horrendous dizziness and worse dazed feeling, eventually dizziness gone a fortnight later so I can drive now but still dazed. Had shivers and flu like muscular pain. Got a private heart ECG for a week as so worried but thankfully all well. Spoke to another bc nurse who told me she had never heard of these symptoms and I had to challenge her to do a Google! It's just not acceptable that we're given no information on withdrawal symptoms. A simple guide would help, including the option to taper off which I've heard helps. This process could take me months yet - thank goodness my work are understanding but I'm struggling with my studies. Hope this information helps. Oh - there's also an interaction Tamoxifen has with potassium so make sure you have potassium rich foods when you stop.

  • Thanks to everyone for posting.I am 57, having taken Tamoxifen for 10 years. I have stopped taking Tamoxifen just a few days ago as my medical exemption card expired and was astonished at how little information there is out there about what happens next. I had arranged a telephone conversation with a pharmacologist through the drs but he was the most patronising and uninformative person possible. At first he said there were no side effects and with the next breath told me that the drs would need to discuss with breast cancer consultant as they have the expertise. I have moved from East Sussex to Cheshire last year so have no contact with the breast clinic and miss my old Drs very much, although it is so much easier to get appointments here. They don’t know me and have no time to read my notes. Not their fault, just the system. 
    I’ve stopped of my own accord and just wanted a bit of a heads-up. During taking Tamoxifen, it caused cataracts and I had operations to sort that. There have been a few other issues, but fortunately not debilitating or too much for me to cope with.

    I have had nausea much of the time during taking it, but was surprised how sick I felt this morning, just 4 days off it, which is mainly why I decided to look up if this was common. 
    From reading this I guess everyone is different and I should just take it one day at a time.