Hello Lizzell, 

I am sorry to hear that coming off Tamoxifen after 10 years has left you feeling so exhausted and emotional. 10 years is a long time to be taking a drug and it may be your body's way of adjusting to the change. I would maybe give your doctor a call and describe these symptoms in detail. I am sure your GP will have some good advice for you and suggestions to help you feel better again. I thought I would also mention this thread on our forum where several members also shared their experience of coming off Tamoxifen after many years - I thought it might be interesting for you to read some of our members' experiences after stopping Tamoxifen. I do hope these symptoms will subside very soon and that the doctor can help you get back to normal again in no time!

Best wishes, 

Lucie, Cancer Chat Moderator

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

Hi, I'm 56 and stopped taking tamoxifen last week after taking it for 10 years. My side effects so far. I feel like I have a head cold and my skin is a bit shivery and feels not right. My eyes are constantly sore, not agony but uncomfortable. Also and unusually, I'm a bit constipated. My energy levels are a little down on normal. Thanks, I hope this helps x

The symptoms I previously had have mostly subsided but now I am struggling with hot flushes especially during the night  and I spend most of the night trying to cool down and getting out of bed so the bed cools down which is leaving me exhausted in the morning. Has anyone else suffered with the same thing and found a solution that helps.

I came off Tamoxifen about a month ago after being on it for 11 years. I’m 58 and had breast cancer 11 years ago.

i had terrible hot flushes while I was taking it but considered those to be the least troublesome side effect after all the other treatment I’d had.

Since coming off, I agree with others on this chat  - I feel generally a bit unbalanced ie more emotional, have terrible brain fog and now I’ve also got tinnitus. Is that just a coincidence or does anyone else have tinnitus?

Hi

I've been off tamoxifen a month now having been on it for 18 years. I've found alot of the symptoms on these posts affecting me. Like you all I wasn't warned about feeling this rubbish! My symptoms include flu like so much so I take paracetamol to relieve them, tiredness and much worse hot flushes. Nausea is another one! Like others Side affects of tamoxifen were mostly hot flushes. I'm    Hoping the symptoms I'm getting now will dissspate soon!

Hi I have just came off tamoxifen after 10 years 2.5 months ago.  My sweats and flushed are worse. Like you I could burst into tears at the slightest thing.  Brain fog is a understatement I feel as if I can't remember a thing I get confused at times. This was how I felt going into the medication. I feel awful just now   I sympathise totally with you