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
Hello there. I haven’t posted for a while either but needed to come back and ask advice too. I’ve been on tamoxifen for 2 and a half years. the hot flushes have never proved a problem. However, I’ve got cysts and fibroids, very heavy sporadic periods and extreme pain during such times. My libido is at an all time low. even George Clooney wouldn’t be able to do the job for me at the moment. AT my check up 2 weeks ago I told the consultant I’d had enough of the stuff and she suggested I have a break from tamoxifen for 6 weeks.
In 2 weeks I’ve had excruciating pain (as if someone is pulling out my ovaries) and literal sweats day and night. Whereas before the hot flushes didn’t produce any sweat, I’m constantly perspiring. Can anyone shed sone light on this? I’m weeing at least 3 times during the night. does this sound familiar? Thankfully I haven’t been hit with anxiety attacks like you chatta. YET!
Hi
I came off tamoxifen in June and was surprised as I had hot flushes and bone pain again. I have also noticed I get terrible mood swings and emotional. Apparently this can be normal as my bc nurse has advised! Hot flushes have stopped now just waiting for my moods to even out again!
I hope this helps x
Hi I have just had surgery & stopped Tamoxifen for 4 weeks ( I have been on it for 15 months). My flushes were more frequent & turned to sweats and I broke out in teenage spots. I am back on it now & sweats are subsiding, who would have thought I’d be glad to take it again!! I assume the withdrawal symptoms fade over time though.
S x
Hi. I was just told I could stop taking Tamoxifen after 7 years. My oncologist gave me no information about possie withdrawal symptoms. After about a week I noticed that I was very sleepy and extremely tired. I was barely able to drive my daughter to work. So I came home and slept most of the day. This helped. The fatigue and aches continued so I started looking for information on tamoxifen withdrawal. I found Marnie Clark’s website which has given me lots of good information. I am trying to eat more nutritious foods and resting whenever my body tells me to. Tamoxifen withdrawal symptoms are real.
I have also stopped Tamoxifen after 6 years. The emotional side effects are horrible! I feel like Im in a constant state of high anxiety and fear. Mood swings and sweats are here too. I was also on Welbutrin, so maybe I am having withdrawl from both. I quit because my health insurance was cancelled, but should probably take a small dose of each and taper off. Anyone else have this issue?
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!
Do you feel better now. Any more pelvic pain. I have that and think its the estrogen
I fiund a high fat duet made me feel better
Have you tried a high fat diet?
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?
hi
a bit off topic but just wondering if any of you ladies coming off tamoxifen after many years started out as pre-menopausal, grade 3, lymph node positive diagnoses? I’m recently diagnosed and half-way through chemo. It’s hard to find many positive stories ten years down the line as people tend to leave the forums when they’re well I suppose. Though this may be a good way to find some positive stories as I feel hopeless at the moment.
thanks
Did having the hysterectomy help? I just went off Tamoxifen in March, now in June I am getting my period again along with terrible pain. The drs told me I stopped my period because I was post menopausal (I was on Tamoxifen for 3 years), they were going to switch me to something else “more effective “, probably because they get a kickback from the drug company. Anyway I’m not taking either one of the drugs because I have been having excruciating pain and they have sent me to a rheumatologist and want me to do a sleep study to see if I have sleep apnea…ignoring that all of this started with my stopping tamoxifen. I originally thought I would get a hysterectomy because I had a large fibroid that was becoming painful, but I had this recurrence of breast cancer after being clear for 5 years and started tamoxifen. I enjoyed not having a period and the fibroid issues resolved. I don’t want to be on any of these meds, I feel like I have been lied to by the doctors, so if a hysterectomy does the trick I will check it out because I can’t live in pain like this.
Yes!! I am experiencing the same thing, I stopped Tamoxifen after 3 years, I am in terrible pain. My doctors keep going circles around the actual cause sending me to rheumatology and sleep study…saying well it’s probably fibromyalgia, but we will do bloodwork and put you on an antidepressant that helps with pain. No one wants to take the blame or fix the problem. My PCP has prescribed tramadol which is the only thing getting me through… just barely. Currently waiting on results from one last test from the rheumatologist before deciding whether I want to take an antidepressant. Someone else mentioned having a hysterectomy…. I asked if that helped, waiting on a reply.
Best wishes to you, let me know if you find the answer! Heather
I have been off for 3 months now and having excruciating pain as well. Drs are telling me it’s probably fibromyalgia because bloodwork so far shows no signs of inflammatory disease. Never mind the fact that this all started when I stopped tamoxifen. I feel like I’ve been lied to this entire time after taking tamoxifen, I stop my periods. The doctor said that I was probably just going through menopause and after not having periods for a couple of years, they decided they wanted to put me on a med, other than tamoxifen, after doing bloodwork showing that my hormone levels were showing that I was post menopausal. Well, after stopping tamoxifen, I started having pain when switching to Arimidex. I read somewhere that this can cause loss of bone density and pain so I stopped after a couple of weeks and now I’m not on anything. Well, I am not post menopausal because I started my period again yesterday I am so frustrated at being lied to by doctors and then they don’t want to acknowledge that tamoxifen was the cause. So I’m going through all of this stuff they’re telling me I need to do a sleep study they sent me to the rheumatologist. The only saving grace is that my PCP prescribed me tramadol and that is the only thing getting me through right now I am 50 years old. This is my third bout with cancer, two different kinds, NHL when I was 29, and a reoccurrence of breast cancer after five years being clear, I am so tired of being in pain. I can’t sleep because of the pain, I find it so difficult to even get out of bed in the morning. I wish I could find somebody with the answers. That’s why I’m here. Please let me know if you have any luck. ~ Heather
I stopped taking Tamoxifen this past February after taking it for 5 years. My joint pain has gotten worse and worse, along with my fatigue. I went to my survivorship “doctor” who pretty much said I should see my primary doctor or gynecologist. On my own I decided to see a rheumatologist, who took a ton of tests to rule out anything autoimmune. When all my tests came back negative, she diagnosed me with fibromyalgia. That’s where I am now. I go to acupuncture once a week and I started yoga for fibromyalgia. I’ve gained a ridiculous amount of weight since chemo so my cardiologist prescribed me Wegovy; unfortunately my insurance doesn’t cover it so I’m paying $1,250 a month for it! I take my 4th shot tomorrow (one shot a week) and so far have not lost a pound. I’m almost 61, diagnosed with breast cancer in 2017 when I was 55. I’m a shell of the woman I used to be.
I have had exactly the same symptoms as you as well as very low mood, irritability, memory loss, sore eyes. I feel as if I aged 10 years overnight. I am 71 and took Tamoxifen for 10 years. I came off it 6 months ago. I was beginning to think there was something seriously wrong with me. My doctor did various tests which were all normal. She has no idea about the after effects of Tamoxifen. I presume we just have to put up with it and hope that it eases in time.
Sorry to revive an old post, just this is one of the most prominent results on google, even in 2024. I’ve had a variety of withdrawal symptoms that have most abated, so just posting in case it could be of use to someone for either “there’s light at end of the tunnel!” or options to discuss with Onco.
In short I’m 38, pre-menopausal, stage 2b in 2022 that stopped at first sentinel biopsy. Did rad, no chemo (had only 5% benefit), Goserlin 2 months, Effexor & Gabbapentin (failed attempt to control the hot flashes waking me every 45min), and after a 2 month break to detox, Tamoxifen in 20, 10 and 5mg. Never been overweight, low carb, don’t drink / smoke. I had the “under 5% chance of symptoms” buffet <3
Tamox experience: I spent 3 weeks on generic 20mg pills, took about two weeks to start feeling symptoms. Joint inflammation, dizziness, exhausted, headaches, photosensitivity, blurry vision, confusion, those darn hot flashes keeping me up all night, anxiety, heart palpitations. Spent two weeks off until symptoms finally calmed, then Onco placed me on generic 10mg pills. Same side effects, just it took 3 weeks to happen. I asked for 5mg, but was told it doesn’t exist. I said no, I’ve read many accounts online. I pressed, and they located a liquid Tamoxifen called Soltamox, but it’s a non-generic so it’s $300 a bottle in the US (it’s made in Germany). Insurance covered a portion. It can be dosed to 5mg, so after a two week break, I tried this. Same results again after 3 weeks. Again, two weeks for symptoms to reduce to tolerable levels.
My mother (post menopausal) had been on Tamoxifin for five years, no symptoms.
Tamox withdrawl: After the two weeks off Soltamox 5mg, I could sleep for maybe 1.5h chunks, vision still blurry, but good enough to drive. The other symptoms were much better, although still felt low IQ and slow/tired. Week 3, wow I was feeling great! Still blurry vision, but everything else mostly better now and HUGE ENERGY. I even went solo bowhunting and got a deer, huge confidence boost after a psycho year! Around week 4-5 though I started getting dizzy, and all the tamoxifen symptoms all slowly accumulated over a three week period and peaked. This was day two of my now-resuming period (this is important, later). The extreme dizziness, photosensitivity, joint pain, palpitations and blurry vision were the constants, while the others came and went. I could not even look at a TV or my phone without wanting to puke. At the peak I was rushed to emergency for heart attack symptoms - the palpitations got so bad I thought my chest was being crushed, and I couldn’t string together a sentence. At the hospital they did blood samples, heart xray, EKG, POTS test - everything came back FINE but the nurses could see I was clearly messed up. I did not have another episode like that, and my symptoms slowly reduced over a 3 month period, peaking on day two of my period onsets, but each month getting better.
Observations: I read that Tamox is a persistent drug in the system, breaking down into many interesting things as it fulfills its role, then is slowly flushed out of the body over a two month period. There is a warning label warning us to be cautious of conceiving in the months following ceasing its treatment - ie it’s not done with us. All of my worst symptoms during withdrawal always snowballed 5 days before my period, peaked, then reduced during the following two weeks. Then the next month that intensity and duration of symptoms reduced. Then more reduction. The dizziness took 9 weeks to resolve, which is more than the warning label talks about. I am on week 12 now, with the blurryness about 80% resolved, my memory/brain fog finally lifted, photosensitivity almost gone, and a handful of gentle hot flashes during period, but they went away after a few days. Energy took 11 weeks to pick up, and joint pain is mostly done with. Heart palpitations have greatly reduced, but I still get little ones every other day. Notable reduction in random anxiety at about week 8-10.
My Onco was very dismissive of symptoms, but I started recording all data, timestamping, and looking for trends in a spreadsheet (much more data than I’m listing here, so I don’t make this even longer, lol). His demeanor changed when I presented this in a tidy format.
I would guess that this is stretched out on a longer term user and pre/post menopausal are totally different ballgames, but I wanted to share to show that even on a small brief dosage it can feel like wow is this ever going to end? Please be gentle with yourself, things do get better!! but it may be on a much longer timeline than one would ever expect. I know a few gals who endured years of Tamox, and they’re back to hiking and other passions, they just had to be kind to themselves as the symptoms melted away over months to a year.
Things I found helpful: (disclaimer - my choices based on research, Dr talks and my rural lifestyle, not offering medical advice)
During the extreme dizzy/photosensitivity phase, I gave up screens and reverted back to books and built a heckin load of cat puzzles (lol). Lots of low-sugar electrolyte drinks (Nunn tablets are my fave) and hot tea to stay hydrated to reduce heart strain thru the palpitations. It can feel awkward to ask for help again after people have been with you through this over a year of cancer therapy adventures, but it really helped me through this last unexpected, excruciating “push” and now that I’m 80% better I’m paying it back in spades to all my loved ones, and all of my relationships have reached a new depth.
Lots of damning research available on heat & fluid contact with plastics/teflon breakdown causing endocrine (hormone) disruption. Busied myself with a kitchen plastics purge and went back to cast iron, stainless steel, wood implements, and food storage in glass, silicon and beeswax wraps. Organic food when I can afford, cut out sugar, gone low-carb and started some gentle fasting. Helpful to feel grounded on a meaningful path of improvement, whatever route is chosen.
I used a recurve bow (think “robin hood” bow, not a modern compound bow) to sloooowly build up muscles damaged from breast tumor removal & sentinel biopsy - I could barely pull it two months after surgery, but after a year, back up to speed and can pull my 54lb hunting compound again. Archery is also a wonderful confidence booster, something that improves over time, and a nice daily zen constant to what can otherwise feel like a frickin chaotic year. My sincerest wishes for everyone to return to that feeling where you have some control over life again. It comes.
I’m not doing reconstructive surgery to fix the cookie bite, I’m getting my 6" breast/rib scar tattooed into fish gills, with mermaid scales & a fin down the ribs. Humour is the best insult to cancer. All of the suffering, endurance and victory can be turned into art. I’m working on a mural now. Perhaps something speaks to you through this journey, and you can make something amazing from your expression of your journey. Just a little more to go, you’ll get ontop of your Tamox withdrawl <3