Tamoxifen withdrawal symptoms

Hi Alessandra,

I took Tamoxifen for 5 years and just stopped, yesterday was my first day without it.  I've also been wondering about withdrawal symptoms. I asked my Oncologist and he said there aren't any.  However, I've read that some women experienced an increase in hot flashes and weight gain, yikes!!  I was diagnosed with stage II breast cancer in 2004.  My chemo started in November, Tamoxifen started in March 2005.  Mine was also Estrogen positive which my doctor had told me is the one that tends to "behave", as he put it.   

When you say you're not feeling too well, what are your symptoms?  I had issues with depression after 3 years of taking it though not sure if that is the cause. I'd heard that depression is one of the side effects of Tamoxifen.  I've been taking a very low dose anti depressant since then. I still get bouts of depression now and then but they don't last more than a few hours and I can control them rather than them controlling me.  I elected to stay on the low dose and deal with it rather than increasing the dose.  Have you experienced any depression symptoms while on it or after?  

I have noticed slight bouts of feeling blue for the past 2 days so I'm wondering if my body will be going through this for a while.  Also, will I eventually not need the anit depressants anymore.  Beyond this though, I haven't noticed anything else. 

I hope my info helps.  I'd love to hear back from you if you have the time.

Thanks,

Susan

P.S.  We're FINISHED with our treatments, YAY!!!  And congratulations!!!!!

I temporarily stopped for 2 weeks for the sake of surgery and have just restarted. Ive only been on it for 5 months or so.  I didnt really feel that there were any withdrawal symptoms.

Musical

Hi Alessandra,

I too just stopped taking Tamoxifen (July 1st to be exact), and I'm curious to your side affects. What exactly are your symptoms?  I was due for my period on Monday & got it on Saturday & it was a little heavier than it's been.  I'm also getting a lot of cramps.  At first I thought it was my period, but now it's over & I think it's actually gas pains.  I'm not sure it either are due to Tamoxifen withdrawals or not.  I was wondering if you have the same symptoms.

Thanks & good luck.  

I'm not sure of your situation, but if you're having bleeding after Tamoxifen and you still have a uterus, consider talking to your doctors. Tamoxifen can to cause uterine cancer. I have found that much out from the internet.

I have finished 10 years of Tamoxifen in August. I also had some pretty severe joint pain, but it lasted only a few months. I'm a nurse, so I am usually on my feet for most of my 12 hour shift. But I found that keeping moving actually helped. The pain was worse on my days off when my activity level was down to that of a normal human being. My advice is to get outside and take leisurely strolls, it helps.

Now, 4months after stopping, I am experiencing bouts of deep sadness. My oncologist assures me that this is just another little bump in the road and is most likely Tamoxifen withdrawal. How long will this last? And what else can I look forward to? Since I am one of the first patients to take Tamoxifen for ten years, no one has any answers. So maybe I'll cry all day 2 times this week and maybe just once next week for no reason, but I will celebrate 10 years as a survivor EVERYDAY! ( and at least I'm not vomiting everyday 😂)

WE DID IT!

Please accept my congratulations for being on Tamoxifen for 10 years, I am quite astounded by your endurance. I have had to go off it twice as it turned me into a homicidal maniac so am currently only on Zometa, waiting for my oncologist to put me on something else.

I am so happy for you and wish you a long healthy and happy life.

Warm wishes

Paula xxx

A few days ago I just went off Tamoxifen after 6 1/2 years. My uterine lining has increased in thickness to 11mm so my onc says that Tamox is now more of a liability rather than a benefit. She did not switch me to an AI. I am 58 yrs old. Today I am feeling just not right , almost flu like, so came here to see if this was normal. My onc also said I would lose about 5-8 pounds by going off, but I have read elsewhere about weight gain. Hoping my onc is right! Will keep this as a favorite topic so I can follow along. Have a good weekend!

After taking Tamoxifen for 6 weeks shy of five years, I quit Tamoxifen. After quitting Tamoxifen, I still have hot flushes here and there for about the first 1.5 month. After a few weeks, I noticed I felt a lot more energy. It's been night and day for me: I used to feel really exhausted around a certain time of the day and suddenly I'm fine now. It's been about three months since I quit, and my periods are now more regular but heavier; my weight is about the same although I've exercised a bit less because I have an injury; my hair is still thin but there hasn't been enough time to see what the new growth will be like; I continue to experience vision problems which my eye doctor figured out was related to my Tamoxifen through a number of special eye tests; and my breasts are tender, swollen and hurts to be touched (I'm dreading my upcoming mammogram). The big bonus is that I have all this energy, which is why I am typing this at 2:41 am--it's a good thing. I'll write back when there are more changes. I wish everyone well!

so I was on Tamoxifen for 11 years and in November 2017, I finally stopped taking it. I was sick of being tired all the time, bone and joint pain, depression, and the neuropathy. Actually, I was just sick of focusing on being sick. I had a mastectomy on right side in 2006. Diagnosed stage 3. Did chemo and herceptin. And had a hysterectomy except for the removal of one ovary. Nothing much has changed in the six months since I stopped. I still have night sweats, joint pain, etc., but that's life and I'm used to it. What is different over the last few weeks I've been having horrible headaches and breast pain on my non effected side? Anyone else experience this? I'm not sure if it's just hormonal, menopausal, or something I need to worry about. I'm 46.

lka--I've been off Tamoxifen for a couple of months now and do have an occasional headache but I'm not sure that's not related to all the pollen in the air. I don't normally have allergies but I know Tamoxifen can cause lots of weird things. I'm struggling more with increased vaginal discharge which I really need to have checked. I'd probably call the doctor and let them know about the headaches and see what they think.

Ika, I've been wondering about possible withdrawal symptoms. I'm a 7 year tamoxifen user, 60 yrs old and have been experiencing increased joint pain again. I am also a bit upset about my continually thinning hair. Don't get me wrong, l am thankful to be cancer free, but wonder if 7 yrs is enough. I am considering skipping one of my two 10mg tablets every other day for a month, the taking 10mgs a day for a couple of months. I will discuss this with my oncologist, but don't have much hope of getting his blessing to go against protocol. Still he always asks about side effects.

I hope to hear from others that have stopped tamoxifen or are questioning dosage.

I know this is an older post, but I'd love to know if anyone out there has any withdrawal symptoms after stopping tamoxifen? I stopped taking it a month ago and am having some hip pain. I was blaming it on my saggy sofa, but I've been sitting on the sofa for years! I've just noticed the hip pain for the past couple of weeks. Anyone else have this? Thanks!

Abbey11--I had crazy stuff going on when I finished my 5 years! All my SEs that I had gotten to manageable levels came back with a vengence for about 2 months then settled back down and eventually dissipated at about 9 months. It was like my body was determined to hang on to every last speck of that crap as long as it could. Take a tylenol here and there for a bit and see if it doesn't settle back down.

Hello! I, too, just stopped taking Tamoxifen after nine plus years. Been off of it for two weeks. Does anyone else have experience with stopping after so long? I have been feeling slightly disoriented, irritable and just not myself. Any thoughts? Thanks for any input.

I know this is an older thread, but thought I'd add to it. I reached then 10 year mark on Tamoxifen early November. Then, I began to ween myself off and took my last pill one week ago. Three days after I took my last pill the skin on my finger tips began to peel or slough off. It began with one finger and over the next few days, the skin on my other fingers have begun to do the same thing. I cannot think of any other reason for this, other than quitting Tamoxifen and the changes my body is now going thru. I contacted my dermatologist and will also contact my oncology nurse.

Has anyone had a similar experience, coming off of Tamoxifen?