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!
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.
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??
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!
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?
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.
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.
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. 👍🏻
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!
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.
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!
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.
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
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.
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.
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!!!!!
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.
Sorry, my post ended really abruptly, computer glitch!! 😀 I'm really grateful for any responses. Big hugs to all of you xxx
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
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 💕
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.
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.
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.
i have had everything mentioned in these posts, I went back on it and don’t know how to come off
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.
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.
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.
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?
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)
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.
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
Very common: Fluid retension
Very common: Depression
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: 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.
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?
I'm 53 years old. Diagnosed with DCIS January 2017, had lumpectomy March 2017, radiation April 2017...I went off Tamoxifen two weeks ago after being on it for 17 months. My hot flashes had settled down while taking Tamoxifen and weren't bothing me very much or very often and NOW they are almost hourly and are HORRIBLE. Full sweat on my face, neck, back...sleeping like crap...aches in my hips during the day...had NO idea there were side effects for going OFF Tamoxifen. I eat a mostly vegan diet and exercise regularly and am in great health so I wonder if it would be even worse if I wasn't in good health? I can't find anywhere any information on how long these "withdrawal" symptoms will last but I'm not happy!
Hi, I too am having a terrible time after coming off Tamoxifen after 10 years. I thought it was just me! I have never felt so ill. It is so debilitating. Aches, pains, tired, head fog. 3months down the line and I have no change in symptons.
I stopped taking Tamoxifen two months ago, after being on it for 10 years.
My surviving breast is very painful and tender which is very uncomfortable.
But, more serious than this is my total lack of energy. I feel very floppy when I get home from work.
I am trying to just take things easy and to rest when I can. I am interested to see Lyd has also being feeling very tired. Like her, I am trying to improve my nutrition to give my body some help.
Anybody else having these symptoms?
Hi, I haven't posted on this site for a long time bit it's really good to know it's there. I'm finishing my 5 years on tamoxifen now; had terrible trouble getting on it in the first place (felt very tired, weepy, couldn't sleep and as for my memory ...!) but things did eventually settle down after about a year. Now it's time to come off and all those side effects have come back, along with huge hot flushes and anxiety attacks - lovely! Has anyone else had the same? Any tips on getting through it gratefully received!
Hope everyone's well, xx