Hi Lizzell,

I realise this post is a little old now but I wondered how  you are now? Did you get to the bottom of the cause?

I've recently come off Tamoxifen  after 5 years and I have never felt worse. Generally I was ok taking it, I didn't really struggle with side effects. However since stopping I feel exhausted and very snappy. But mostly emotional. I'd say for the first time in my life really depressed. 

I'm seeing my GP soon. So much info online about taking Tamoxifen but not a lot about stopping!

X

Hi Lizzell,

I realise this post is a little old now but I wondered how  you are now? Did you get to the bottom of the cause?

I've recently come off Tamoxifen  after 5 years and I have never felt worse. Generally I was ok taking it, I didn't really struggle with side effects. However since stopping I feel exhausted and very snappy. But mostly emotional. I'd say for the first time in my life really depressed. 

I'm seeing my GP soon. So much info online about taking Tamoxifen but not a lot about stopping!

X

I stopped taking tamoxifen 2 weeks ago after it being prescribed for 10 years, in the last week I have felt so tired, my eyes are stinging and watering and I just want to close them and go to sleep. I sit down to watch tv or read and I just have to stop what I am doing and have a nap.

I also feel irritable and have no patience and I'm worried that it is going to lead into a bout of depression.

I didn't have any side effects whilst taking it and I never imagined that stopping it would lead to this.

Sounds very much the same as me.

My GP didn't seem to think it was linked to coming off Tamoxifen at all. However, she did agree to blood tests which I'm waiting results for. She also suggested I go back on anti depressants which I had weaned off of over the last year. Disappointing, but I know I need them at the moment.

I really hope you feel better soon. X

Hi, I stopped taking Tamoxifen 2 weeks ago after 10 years and I feel terrible with exhaustion, not sleeping flushes, almost flu like, can't stop crying, joints like an old woman, feeling weird in general. Now I have been on antidepressants most of my life and so this really isn't helping me. I really hope this is very short term, I wasn't warned or didn't expect to feel like this. I wonder if there is something I can take to help this? My b cancer was hormone positive so probably not. It is reassuring to see other ladies experiences rather than it just being me. X

I've stopped taking tamoxifen for 6 weeks after taking it for 4 years. I've tolerated it quite well and the effects of the menopause but I have felt dreadful since stopping it. I had an abnormal bleed after 15mths of no periods so had a hysteroscopy and they found a polyp. My oncologist wants me to have some bloods and I needed 6 weeks without the tamoxifen. I've plummeted into a horrible state of feeling so low, tired and completedly depleted of energy and emotions. 

I've been on Tamoxifen for 11 years I'm now 56. I've stopped  tamoxifen for 2 weeks now. It's reassuring to see these posts. I feel nauseous, very hot all the time, brain fog and extremely tired. Hoping this wears off over time

For me the side effects of tamoxifen/menopause have been tough - obviously very grateful not to have cancer but give us a break!! I thought stopping tamoxifen would reduce the side-effects - tbh my GP doesn't really know how to help. 

Good morning KylaG, 

I am just reading your post from 26th August, 2020 and I am wondering how you are now? I am hoping that I find you well. I am going through what you experienced coming off tamoxifen just now. The joint pain and muscle pain are the worst and the coment about feeling like an old lady is ringing true with me. Can I ask you how you are now? Did you get any relief? 

Bedt wishes 

Shortie x

Hi Shortie, 

Can I ask how you are now?

My mum has only been on Tamoxifen for just over 2 months but I noticed quite a few side effects so she has been off it for a few days. She is so confused, cramp in hands, cloudy vision, total exhaustion, no motivation and a complete personality change. She has been used to doing exercise 4 times a week to now having difficulty walking to the kitchen.

How long does it take to get out of your system? The confusion and exhaustion is so extreme.

I'm 71 and I came off Tamoxifen after 10 years six months ago and I'm having exactly the same problems as you.  No side effects while taking it, but experiencing all that tiredness, sore eyes, irritability and very low moods as you describe.

I also have developed a lot of variable joint pain, never know what is going to ache from day to day and my memory is becoming very erratic.

This is the first time that I've considered that it might be the after effects of the Tamoxifen. I was beginning to think it was just age, but it's all happened in the last 6 months.

Does anyone have any idea how long this may last? 

Came off Tamoxifen after 10 years. Feel exhausted and irritable. Sleeping a bit better, which is good. Glad I started reading your comments. Was wondering if it was in my head. At least it’s not just me. Fingers crossed it will get better. 

• After 14 years  I was told to stop it and feel the same too . I’m 78 snd off course everything is put down to age . Very confusing