71.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Anyone had tamoxifen withdrawal symptoms?

60 REPLIES 60
earthandie
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi,
It did take a while - maybe several weeks but it did get better and I got back to "normal"  Wishing you good health moving forward.

abillie
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I am in the US.  There are no forums like this here.  
i am coming off Tamoxifen after 2 1/2 years…I have progressively gotten worse and worse symptoms and ended up having a stroke.  I continue to have TIAs so finally my oncologist conceded to remove me from it.  
i am reading all these side effects and now I’m like wow…this is gonna suck some more.  How long does the withdrawal symptoms last.  I know I’ll be fine as long as I know there’s an endpoint.  

Meagan
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi Sinead,

 

Just wondering if you have gotten pregnant yet?  I went off of Tamoxifen after 2 years to try to get pregnant at 35.  I had my first at 36 and my second at 38!  Then right back on Tamoxifen for 8 more years, I'm stopping in 1 month.  Yikes!  

 

Hope you are doing well!  Meagan

mbentle
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I just came off after 4 years 7 months (developed gallstones from T which I understand is common) almost 4 weeks ago. Have you had withdrawal issues with depression?

earthandie
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi - Yes I am happy to say it has gotten better!!!!  It has been about a year since I stopped, after 10 years.  Was miserable at first,night sweats, lethargic, muscle aches all over, bloated.  It took a while, but feeling much better.  Be well!

sbumgardner
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Just curious if things have improved…..

I also was on tamoxifen for 5 years.  I went off the end of June….I am experiencing night sweats, fatigue and lots of achiness…almost flu like symptoms.  Praying it changes soon!!!!

sineadmcc82
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi everyone! 

I have just quit tamoxifen 3 days ago as I want to start a family.  I was diagnosed at 34 and have been on tamoxifen for 4 years so had yo stop now to try before I get too old.  The worse part for me was the tiredness all the time when on the drug and I suppose the fear of it coming back of I stopped it! I still have that fear to be honest but life goes on and I deserve the chance of being a mother.  Has anyone else come off tamoxifen and gone on to have a successful pregnancy?  Reading all of these posts it’s a bit scary to think that even though I have stopped I will still fee tired and have hot flushes again (during chemo).  I think I am lucky though as some of the side effects that people have struggled with taking it sounded horrendous and I don’t know how they got through it!!

just though I would join in the discussion and see if I can help anyone or if anyone can help me with where I am in my journey now.

 

sinead xx

San_S
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I've been feeling mildly 'fluey' for almost a week now with headaches, fatigue, joint aches, day and night sweats (winter here) and generally flat (though I'm on mild antidepressant which helped with this ~ 10 years ago) - had a Covid-19 test (negative) 5 days ago after sudden onset of symptoms though I've had some mild fatigue and brain fog for quite a while now (hence stopped Tamoxifen 4 weeks ago on oncologist's advice after 3+ years).

So here I am thinking it must just be some odd virus ... when suddenly it occurred to me it's now 4 weeks off the Tamoxifen - could this be related (oncologist had said about 6 weeks until it's all out of my system but didn't mention possible withdrawal symptoms).

There doesn't appear to be much medical literature online about common withdrawal symptoms ... luckily there are these forums where patients can share their experiences - otherwise we would all feel like we're the only one ... or maybe it's just in our head 😞

So now, after reading your shared experiences, I'm thinking the Tamoxifen withdrawal may be the main culprit so at least there's an end in sight for all of us and I'm not just imagining this🤞🏽☺️

artisticlady
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I am so pleased I found this message thread, I was beginning to think I was going a bit doolally.

Nearly all the symptoms from coming off Tamoxifen that have been mentioned have happened to me at some point, in particular the bloating, poor bladder control, foggy brain - though for me it can go from one extreme to the other as some days it's as though my thoughts are in a ping pong ball and bouncing all over the place.  It was so surprised when one person mentioned a numb toe, when I mentioned this to a doctor he was confused and said it might be a trapped nerve.

I have put on about 2 stone in the 5 years I was on Tamoxifen and hoping now that I have stopped it will start to shift as even my fat pants are feeling snug!!

These posts have been a great comfort so I do hope they continue.

Thank you

mgal31
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I have recently came off tamoxifen after 10 years (01/10/2020) and have came out in a rash over face never been bothered with spots like this before so don’t know if there is a connection. Getting me down .

Seabird
Member

Re: Anyone had tamoxifen withdrawal symptoms?

So, I just stopped taking tamoxifen 11 days ago after being on it for just shy of 10 years.  I was 40 when I went on it.  I had mood issues after being on it for a year and thought I was going crazy.  All of the night sweats, ups and downs, irritability and weight gain.  My primary care physician (PCP) put me on a selexor the first year, then changed it to Effexor and then had to increase the dosage of the Effexor after about 5 years.  I was told by my PCP last week, that she doesn't want me to come off the effexor quite yet, and when we do, I will be weaned off it.   Back to the Tamoxifen... so I thought maybe getting off of it is going to be 100% better.  But I have no idea what to expect after reading all this, and I started searching because I'm already noticing, I'm really tired, and I've had some really odd/confusing days since I've been off the Tamoxifen.  My oncologist had me go for a Cat Scan, and I'm getting tons of bloodwork done to see if there's anything underlying, but now I'm wondering if all this is part of the Tamoxifen withdrawal?  They don't tell you any of that.  

My Chiropractor keeps telling me to check my Vitamin D levels as if they get low it will make things worse.  Anyone else hear of this?  

I'm hoping I don't go back to getting periods again, as I was hoping being put through menopause so early would save me from having to do it all over again, but we shall see.  

I'm going to keep coming back to this site to see if anyone has any good solutions. I'm NOT going back on it again, but I don't want to feel out of it/confused all the time or like I'm in a fog.  I have a full time job where I need to stay focused, and use my critical/cognitive thinking abilities.  

Prayer, and trying to eat right/excercise,  hoping this is just temporary.

 

Ohiochic
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi Angelitaibz,

it’s now November 3, 2020 so by my reckoning you’ve now been off tamoxifen 3 months. I’m desperate to find some relief and, or hope! Are you feeling, or starting to feel better?

I was on arimidex then letrozole for 3 years and 8 months but because I was experiencing major side effects the entire time, and I had by his calculations reached baseline on the recurrence graph, my onc allowed me to switch to tamoxifen. It was mildly better, not much but a slight improvement. I have now finished 5 years of endocrine therapy and stopped taking tamoxifen 1 month ago. I was so excited thinking I would finally get my life back. Alas that has not happened! I feel miserable...Still got massive reflux and constipation, muscle aches everywhere but mainly in my legs, back and upper arms, numb toes, frequent urination, burning mouth with ulcers, insomnia, crushing fatigue, brain fog and extreme sadness. 

I hope you respond I sure could do with a friend!

newzealand12
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Yep I stopped if 4-5 weeks ago, after 5 years, my neck, knees, back etc... are all worse, but I started with the swollen, full feeling in my belly back in March, felt like something was growing in there (I'm 68) also my digestive system was upset, gut pain every day.

It's so interesting to hear others have had these unexpected side-effects, I've been fully investigated after suddenly losing menstrual blood, had 2 procedures, lining of my womb is extremely thick at 19mm, normal is between 4-6mm.

But it's all benign, 2 polyps removed, no more bleeding but I'm still having gut pain and discomfort, although I'm not convinced it's connected, just coincidence that everything started around the same time! 

newzealand12
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Wow, you sound just like me, everything you say applies to me! Just had a Hysteroscopy to remove 2 polyps and biopsy taken. I've been on Tamoxifen for 5 years, stopped it 3 weeks ago. 

Angelitaibz
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi really interested in this post. I've been taking tamoxifen for 6 years but just developed fibroids and a polyp. Was unaware of the link between tamoxifen and uterine problems/cancer. I've took myself off but got a big belly, digestive problems, brain fog, weight gain and joint pain. Is it advisable to come off slowly rather than cold turkey?? 

earthandie
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi - I know that your post was a couple of years ago, but I just stopped tamoxifen after 10 years (last  week) and I'm totally bloated, and have been experiencing many body aches and pains.  How long did it take for your side effects to subside?  Thanks!

AndreaMurphy
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi - I have had the same issue - sudden stomach fat. Plus periods started again (irregular) and my remaining breast painful and the size of a melon! My key concern is that I must have oestrogen raging around my body and therefore that is a risk? Has anyone suffered similar symptoms and had any medical advice? I stopped Tamoxifen 18 months ago and have been signed off by the cancer hospital. I tried to get in touch with my consultant, as did my GP, but no response... I have since moved overseas so will start investigations again here but just wondering if anyone had any answers?

artchick
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I’m going through the exact same problem!  I suddenly bloated and it’s mostly in my belly and love handles.  I look pregnant and I’m 56! I have feared the old lady belly for years, but have managed to control my size.  I’m lost and miserable. 

lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

YES YES AND YES!  I started my withdrawal after quitting cold turkey. I feel horrible all the time. Just got told today to go back on and they will just remove my uterus. I’m doing it. It’s been miserable. I’ve also gotten a ton of dark spots on my face from the hormone change. Along with all of tour symptoms with numb hands and night sweats. 

silverbirch32
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi I came off tamoxifen at the end of April and I’m shocked that my belly has become so bloated looking. 🙄 Anyone else getting a big belly? My body shape was never like this before. It’s quite depressing and nothing I try seems to be helping. Also aching joints, neck, shoulders, creaking knees and back. However, I’d like to add that I feel blessed to be alive. 👍🏻

Maddygirl
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I came off Tamoxifen about 2 weeks ago after 5 years on it. I was so excited to come off of it and had no idea my body may react poorly! I’ve had hot flashes again throughout the day & night, just feeling generally odd, and can’t sleep well. It’s 1:30am here and I’ve not slept a wink. So far no emotional issues but will be on the watch for that. I’m comforted knowing I’m not alone and also to know the cause. Well wishes to all!

lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Go off slowly!!!!!

Arahni
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I am in Sydney and have been on Tamoxifen for 2 years after small lump breast cancer. I now have cholesterol of 10.7 and am on a rivostatin 2 months. I feel terrible with both the drugs and want to stop both. My father died of blood clots and I only read about that side effect now on this page. Should I stop cold turkey or go to 15 then 10 then 5?  I am 15 kg overweight and want to be  healthy without medication. 

lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Gina... I am in the US too. And yes, this is the only sight. 

I am weening off. I, too was taken off cold turkey. Then I had to go back on. 

In February I went from 20mg to 15. Then to 12 and now I am 10. Doing it this way has made it possible to do. There are still all of the side effects, but not as bad. 

I thought I was going crazy at first. Thank god for this site!

GinaJK
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I am in the United States. This is the only forum I have found that has any information on coming off of tamoxifen! I have been struggling with so many symptoms for the past year and a half since stopping and never once attributed any of it to stopping this drug. 

 

I was was diagnosed with stage 0 non invasive hormone positive DCiS in October of 2012. I had a lumpectomy but did not require further treatment aside from taking tamoxifen for 5 years. I consider myself lucky for this and am thankful I kept up on my mammograms despite being under 50yrs old at the time. 

 

The side effects from tamoxifen were not bad. My periods completely stopped. I did have to change my antidepressant. I have suffered from depression all my life and had been on Wellbutrin but was told that it interacted with tamoxifen. They switched me to Effexor. 

 

Fast forward to Feb 2018 when I was given the ok to stop the tamoxifen. I decided a few months later to switch back to Wellbutrin as well. Getting off the Effexor was horrible, akin to kicking any addictive drug I’m told. One of the hardest antidepressants to stop. I was not informed of any of this when I started on it. But I went ahead and made the switch. 

 

Im still struggling with anxiety and depression as well as weight gain and stomach issues. I also have coeliac disease and osteoporosis. I am now 51.5 yrs old. 

 

I did not have periods for 6.5 years, 5 of which were while on tamoxifen. Now suddenly I am having a very heavy period. It was quite the shock as I thought after 1.5yrs I was definitely in menopause. I experience all other menopausal symptoms such as hot flashes and night sweats, mood swings, fatigue, etc. I am seeing gyno next week. I am freaking out that I may be in for monthly hell again in addition to my other issues. 

 

It was was a relief to see that others are also having symptoms as it could potentially explain a lot of what has been puzzling me with my health. Although I still don’t really know what I can do to make it better. 

 

Any tips out there? I’m already on Celebrex for arthritis so can’t take any additional pain meds for cramps aside from norco or medical marijuana both of which I use at night only. 

 

Thanks!

DaniHarrison
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I'm glad I read this forum as I was beginning to think I was going mad!! Since I came of Tamoxifen in February after 10 years I have had so many side effects and yet my oncologist didn't wean me off it, just told me to stop it straight.

I've had bloating, weight gain, my left breast (good side, mastectomy on right) swelled up massively (went to hospital had mammogram and ultrasound scan, nothing sinister) and now my back has been really painful around the area I had my surgery (LT flap operation) especially when I lay down to sleep and I have a tingly skin rash on my tummy under my right breast. Not to mention the emotional side of stopping the tablets and being convinced I'll get the cancer back any minute! I do feel like someone else said, they just chuck you out and leave you to cope without all with no guidance? At first I felt good but now I feel like a hypochondriac having a different moan every week! Any suggestions of how to get through these symptoms and how long it would last??  Thanks

justmimiwhite
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi, hope you are feeling better!  Just joined this site.  Was on Tamoxifen for almost 10 years, but discontinued due to uterine fibroids.  Almost 12 weeks off and I feel just awful at times.  Leg cramps and shin splints at nighttime.  Called my oncologist office and the nurse said it should be the opposite and I should be feeling better.  She never heard of a Tamoxifen withdrawals.  Just seeing how other people are coping.

lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

As far as I am concerned, tamoxifen is to blame!  It can make you crazy thinking about it. I went off after 10 years. Then had to go back on because of all the symptoms everyone talks about. Now I am being weened off. Currently on 15 mg. It’s still hard to deal with. Not as severe as stopping all of it. But still awful. 

lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Oh my gosh!  I have eczema on my face too!  Wow. My energy level is so low, it’s been very hard for me to exercise!  So at least you have that!!!!!

Fenners
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I came off tamoxifen Sept 2018. I’m 46 and was on it for 5 years. I coped pretty well on it and have felt ok since coming off, although periods are heavy and erratic and I’m experiencing joint and muscle pain. I ache all the time. Put on some weight, but have increased my exercise routine, which might account for some of the muscle pain! My skin has also become very dry and have patches of eczema on my face which I never experienced before. 

mrsorangecat
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Sorry, my post ended really abruptly, computer glitch!! 😀 I'm really grateful for any responses. Big hugs to all of you xxx

mrsorangecat
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hello, iv been advised to stop Tamoxifen temporarily whilst waiting for a hysteroscopy, (i had an unexpected period last month after 2.5 years and thought i was post menopausal) so i was a bit worried, saw my GP and she arranged a 2 week wait gynae appointment. I had the appt and scan and the lining of my womb was 1mm which apparently shows that i am post menopausal. It also showed changes caused by Tamoxifen (spaces, i think she said) so they are doing hysteroscopy to have a good look and take a sample of womb tissue. I've been taking Tamoxifen since March 2017 and my   advised i stop it until all investigations are completed, that was almost 3 weeks ago. Well i feel terrible. I have what feels like period pain all the time, but no bleeding, I'm anxious, irritable, exhausted, i feel like iv got terrible PMT again but all the time! Is this normal and how long does it last? I 

BellaLasagne
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi all,

 

I came off a week ago after 10 years and am already having night sweats. As it’s been so warm this week I don’t yet know if it’s me or the weather. I’m also feeling rather emotional but have some ongoing family issues so don’t know yet whether Tamoxifen is to blame. Time will tell I’m sure...

So glad I’m not alone 💕

Debbieport
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Yes, been on it for 5 years. Came off the end of 2018. Severe hot flashes for 8 weeks as well as weight gain. Didn't have a period for over a year just before going off. I had irregular periods the whole time on the drug. Eight weeks off the drug, got my period,  then again the following month. Im 48 years old

 Very surprised to be having periods again. 

cupoftea
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi

It’s  been a very long time since I posted on the forum. Following this with interest, adding my experience - I stopped taking Tamoxifen at the end of January ‘19, after 10 years, and am feeling just generally not quite ‘right’. While on the drug I was fairly fortunate not to have dreadful side effects, but did have difficulty shifting weight on my stomach, some hot flushes and thinning hair. I had hoped for some change in this- especially the hair thickening a bit. It’s early days, but since stopping I am exhausted, flushes have increased ( I wasn’t post-menopausal 5-6 years ago, but possibly that has changed) and have an increase in pelvic/ back pain which I am keeping an eye on. I do also take thyroxine- my thyroid hormone levels do tend to fluctuate - so it is hard to tell at the moment whether some of this is down to that or the change from stopping Tamixifen. 

MazEdie
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi. How long have you been off Tamoxifen?

MazEdie
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi. Was 57yrs, Diagnosed 18/1/2014, ER positive,Her2 negative., Lumpectomy 28/2/2014 and Radiotherapy April/May 2014. Had partial hysterectomy in the June, prolapse. I was on Arimadex for 1year..boy'o'boy.. it was hard work. Tamoxifen for 4 years in May 2019. Never liked the heat but it is harder than ever now. Try and stay inside, when possible. Bladder urgency has been difficult. Never too far from the loo. A pro-biotic Cranberry has helped me so much. Brain fog..don't think it's working well at all.But looking ahead to May..I'm not sure what to expect now, fingers crossed all will be well.

Sabre
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hello

 

i have had everything mentioned in these posts, I went back on it and don’t know how to come off

Sabre
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I have been on tamoxifen for 9 years, I have been told I can come off due to think lining of the womb.

i have tried to come off but experience all the side effects mentioned in these posts.

Can anyone advise, my GP wanted to put me on anti depressants which I don’t need and my consultant wanted me to go cold turkey, which I tried and felt awful. Have we been used as an experiment, as no one seems to understand how we feel, with no real advice on how to come off this drug. What is next step.

Sabre
Member

Re: Anyone had tamoxifen withdrawal symptoms?

 
lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I don’t know what I’ve posted. But mine was so bad I went back on it full dose. I see my o colorist this week and he’ll probably start to ween me off. I’m scared!  I’ve already put in about 25 pounds (or more). Ugh. 

Twiggs50
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I feel the exact same way. I am bloated, gained weight, leg cramps, numb hands, and also depressed and cranky. I am 50 and have been off Tamoxfin since end of September 2018. I thought I would feel better by now, not worse.

pxu230
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I just quit about 8 weeks ago afeter 10 years of Tamoxifen.  I am having the same issues.  My numb hand & arms are waking me at night and the hot flashes are intense!  I am 57 years old...muscle aches,,,,,I also don't know what is related aches or like you said menopause?

trismahr
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I was very mesed up on Tamoxifen and even worse when I went off.  Another commentor mentioned using estrogen to stop withdrawl (scary for an estrogen +ve metastatic breast cancer patient). I remembered that before my 1st diagnosis in 2015 I got results for the flushing with Sage (has estrogenic activity).  I had some left and tried it yesterday and have gotten vast improvement in my temperature control issues and emotional lability.  I am back to pre-Tamoxifen menopause issues and haven’t taken any today.  Seemed to break whatever wacked out cycle I was in.  Definitely worth trying (dose was 1 to 5 daily and I took 4 in about 12 hours and had a good evening and minimal night sweats)

lisar2018
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Hi.  I just stopped taking tamoxifin after 10 years on November 30.  Since then I have had on and off numb hands.  I have had night sweats.  I have also had bouts of depression for no reason.  I am feeling some bone pain and muscle soreness.  Also short of breath when exercising.  I have also felt bloated.    I don't know what's related to the tamoxifen as I feel like some of these things could be related to pre-menapause...I just turned 50.  My oncologist told me that if anything, I would feel better than I have quitting the tamoxifen.   
I don't feel so good yet.  Are these symptoms similiar to any of yours?  I feel like I need a full blood panel or something.  I have been on anti-depressants for the past 6 years...I don't know if going oiff the tamoxifen means I can go off the anti-depressants.

ScoobyGirl
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I came off the tamoxifen 2 months ago after being on them for 10 years. I’m really struggling with my emotions, I’ve spent the entire weekend in tears and must admit I feel that I am totally losing the plot! I don’t know if I am post or pre menopausal as the tamoxifen stopped my periods although I have been having hot flushes over the last month - not sure if that means anything. I’m thinking of going to see my GP tomorrow but don’t find him easy to talk to and I know he’ll just want to give me antidepressants, I really don’t want to go down that route, I’ve had enough drugs over the last decade and want my life back. Does anyone know how long it takes for the tamoxifen to clear your system?

Appletree
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Tolerating Tamoxifen

 

All the Endocrine therapies, including Tamoxifen, are designed to deplete our bodies of oestrogen by one mechanism or another.

 

Oestrogen depletion in itself can have damaging effects on our bodies, including our cognitive abilities, so it's a matter of deciding where our priorities lie. Are we so afraid of cancer that we subject ourselves to a miserable life with debilitating health issues, or do we take the risk of a cancer recurrence in order to have quality of life whilst we have it?

 

There are two main oestrogen receptors, ER𝜶 and ERβ, which are expressed throughout the brain. In general, ERβ is expressed at high levels in the hippocampus and temporal cortex, whilst ER𝜶 is expressed at higher levels in the amygdala and hypothalamus. Multiple studies have indicated that AIs and Tamoxifen can cross the blood-brain barrier and enter the brain. All AIs inhibit both ER𝜶 and ERβ whilst Tamoxifen has a mild stimulatory effect on ER𝜶 and completely blocks ERβ activity. 

 

The information on Tamoxifen in the Electronic Medicines Compendium suggests that adverse effects are closely related to the drug's effects on the two oestrogen receptors. 

 

Quoting from a research paper (downloaded from NICE) published in 2014, several studies have reported the negative effects of Tamoxifen on cognitive function. Results indicated that patients in the Tamoxifen group were significantly impaired and performed significantly worse on various tasks involving memory and information processing. The study demonstrates that breast cancer patients taking Tamoxifen have several decision-making impairments. The findings may support the idea that Tamoxifen resulting in cognitive changes plays an antagonistic role in the areas of the brain where oestrogen receptors are present, including the prefrontal cortex (responsible for higher level functioning), the hippocampus (responsible for factual and episodic memory) and the amygdala (controlling fight or flight and emotions). There are quite a few other papers making very similar observations. 

 

For other side effects, see the Electronic Medicines Compendium and enter Tamoxifen. Amongst the undesirable effects listed are the following:

 

Common: Uterine firbroids

Common: Anaemia

Very common: Fluid retension

Very common: Depression

Common: cataracts

Very common: hot flushes

Common: thromboembolic events

Very common: nausea

Common: Vomiting, diarrhoea and constipation

Common: changes lin liver enzyme levels

Very common: skin rash

Common: Alopecia

Common: Leg cramp, myalgia

Very common: Vaginal discharge, vaginal bleeding

Very common: fatigue

Common: Bone and tumour pain

 

It is very much a personal issue as to how any one patients reacts to the drug; coming off it and returning to a normal state will vary very much between individuals and will depend, in part, on how long your body takes to restore its normal oestrogen levels.

Clara C
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I was in Tamoxifen for about 2 months and taken off it for surgery. At first the side effects went away, then after the surgery, came back tenfold. It was horrible. Desperately fatigued and wooly headed and more. It’s over a month since I came off them and some symptoms have gone, but some are still worse. Anyone know how long it takes for them to go away?

Desert tiger
Member

Re: Anyone had tamoxifen withdrawal symptoms?

Have you tried a high fat diet?
Desert tiger
Member

Re: Anyone had tamoxifen withdrawal symptoms?

I fiund a high fat duet made me feel better