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My experience with tamoxifen is that the first couple of weeks I felt changes but it got worse by week three, but still pretty mild at this stage. By 3 months I started feeling more side effects that seemed to level off. I felt that some of it, minor cramping and the inability to regulate body heat just became part of daily life and not too disruptive. I didn’t really have hot flashes, but if my body was overheated, like a hot day in the car or a hot bath, my body couldn’t cool off fast enough. I’d be uncomfortably hot for a while, but didn’t have that flash of heat. I also had brain fog, which I think I adjusted to and didn’t realize how foggy I was until I did a drug holiday and then lowered the dose. A drug holiday, and subsequent brain MRI, was recommended because I was having headaches 24/7 that had no other cause.
I started on 20 mg for 6 months. I self prescribed 10 mg because I couldn’t stand the headaches at 20 mg - and couldn’t get in to see the doctor fast enough. I did not notice a change in symptoms with 10 mg.
Then did a recommended drug holiday, I did 5 weeks. And started on 5 mg. So I went through that initial start up a couple of times and it was the same on both, 3 week and 3 month markers were when I felt the biggest changes.
I have self prescribed myself a lower than 5 mg dose (I’m not recommending this to anyone because there hasn’t been enough research to show that 2.5 mg is enough, although DeCensi’s research showed that it might be). I was having memory issues - and it’s hard to say if it’s just old age or tamoxifen - but it is concerning to me, and I thought if I lower the dose a little and regain my memory then that’s the answer. I’m sure my oncologist cannot ethically recommend the 2.5-3 mg dose I’m taking because, ethically, he can only recommend what he has data to show it works.
The 5mg tamoxifen is said to be very tolerable with the same efficacy as the original dose of 20mg.