I was on Tamoxifen for 14 months. Things were okay at first, but the past six months have been severe joint pain and leg cramps at night. I feel like 150 years old. It hurts to get in and out of my car. It hurts to turn over in bed. It hurts to get out of bed. it hurts to get up from the toliet.
As an avid yoga student for 15 years, I feel like this drug has robbed me of my passion for yoga and feeling like a normal human being. I have extreme hot flashes and also vaginal discharge and no sex drive. No fun.
I stopped Tamoxifen on January 2, 2018 cold turkey. I have not informed my primary care doctor nor my oncologist. Why? Well, they both do not agree with me stopping this drug. I was stage 1 estrogen postiive and had double mastectomy, tram flap surgery, no chemo and no radiation. I was healthy and happy until cancer treatment. Tamoxifen is a game changer. It made my skin creppy and my hair is thinning. I thought of dating, but my God, I can barely move around let alone think of moving on in life.
So yeah, I would like anyone who can chime in who can relate to my story.
I am vegan since summer 2017. No more coffee, no alcohol, no alcohol, no sugar. Sounds boring right? Well, I am trying to be so healthy, but feeling so crappy.
I have been on tamoxifen for 3 years and out of the blue have started getting really bad back pain, shoulder and arm pain and now knee pain. I am a cyclist and this is really affecting my cycling. I’ve been for nerve testing, MRI’s etc and doctors don’t know what it is. I’m convinced it’s the tamoxifen. I want to stop it for a while and see if it makes any difference. I can’t end up with reumotoid arthritis from this drug.
I just want tho weigh in, because in addition to the breast cancer, I had JRA (Juvenile Rheumatoid Arthritis), and I had 4 joints replaced. So I was damned if i was going to deal with more joint pain. For that reason I didn’t do well on Exemestane or on Anastrazole, but I have been tolerating Tamoxifen well for the past year. BY THE WAY I too had problems all my life finding shoes, and I love Aetrex shoes! They are like magic for me. Yes, I had to add a little extra insole to one pair, but these changed my life! ?
I’m new to this forum, I was looking for info about Tamoxifen and lower leg swelling and pain, and came across you all.
I have been on 2 other cancer drugs for breast cancer, had 2 months off at Christmas off all drugs, as I was experiencing joint pain and hair loss, and now been on Tamoxifen for 1 month. I am really suffering with leg pain, it’s crippling and now my calf is 2” bigger than the other one! I went to my GP for help, he told me to go straight to ER and they thought it might be Deep Vein Thrombosis. After a weekend of injecting myself in the stomach, I have just had a scan at hospital which showed no blood clot, and they have no idea what is going on and sent me home with painkillers!
I believe that it’s the Tamoxifen making me ill, so I have made the decision to stop taking anything at all now, I want some sort of quality of life, and that’s not achievable with these cancer drugs.
I just wondered if anyone else has experienced this problem?
Starrywaves I am on anastrozole not tamoxifen but experience the same as you…hip pain in bed that wakes me or keeps me awake, knee ankle and leg pains.Fatigue, breathless and days however simple can seem like an ordeal.Seem to spend my days gritting my teeth and longing for the next sit down! Like you I was exercising 3 times a week and a walker and while some days are ok others I can barely walk round my flat.I wish there was more awareness of what life after cancer can mean.I beat myself up sometimes for feeling so easily tired.I darent stop the meds as I had two cancers both stage 3.
I too just started Tamoxifen and hate how it makes me feel. Already suffering from neuropathy and now just the first week of taking this I was bed strickened. Body aches…severe headache and the nausea/dizziness is horrible!!! Tried now taking e/o day and each time feel horrible like being somewhat on chemo again!!! Don’t want to take anymore if I have to feel so I’ll all day.
Just a week in on Tamoxifen and already been bed strickened with body aches…hot flashes…and the nausea is HORRIBLE!!! Trying e/o day but still no relief. This is no quality of life after beating Stage 3 breast cancer for sure
I may just stop taking this all together. Not to mention muscle spasms from the antidepressant and sleeping all day when using Gabapentin.
I too just started Tamoxifen and hate how it makes me feel. Already suffering from neuropathy and now just the first week of taking this I was bed strickened. Body aches…severe headache and the nausea/dizziness is horrible!!! Tried now taking e/o day and each time feel horrible like being somewhat on chemo again!!! Don’t want to take anymore if I have to feel so I’ll all day. And I couldn’t even get out of bed to walk because of the pain. When didn’t take for 2 days pain subsided other than my typical neuropathy pain. It is the Tamoxifen…it has to be and these doctors know it!!!
It is a long time since I have been here but I am at rock bottom and doing the Google thing again.
DCIS diagnosis end 2014. Surgery Feb 2015, primary node OK, extra margin taken Mch 2015, Radio May 2016, no chemo. Age 52, postmenopausal.
Started Tamoxifen June 2015. Was told to keep active re DVTs and I thought that would be easy as I am a marathon runner but I started developing horrid leg cramps at night by the end of 2015 and running started to feel like running through treacle with scafolding on my legs.
Prescribed quinnine in mid 2016 as I was getting married and couldn’t face the cramps every night on honeymoon! Quinne stopped the cramps but was only a short course and wouldn;t be extended.
I decided to stop tamoxifen in Oct 2016 with my Oncs agreement.
Aug 2017 I was still getting achy calf with stabbing and ‘pre’ cramps (I am now an expert at recognising a cramp about to happen so can stop it in a 1,000’s of a second of it starting) so went to my Dr. I got nowhere with that because I still run marathons so “it can’t be that bad”… (I am a STUBBORN bugger and I will not let all this stop me).
Aug 2018… I have been back to the Drs today as another year on I am still experiencing the stabbing, achy calf etc but also have achy hips and thigh bones. I saw my Onc 2 weeks ago and was told I really needed to speak to my Dr.
Dr thinks I have a deep muscle knot in the calf. Asked if I stretch !! asked if I replace salts when running !!! asked if I do yoga / massage… yes, yes… yes… yes…
I am fed up. 2 years after stopping tamoxifen I wish I had never started it and 2 years after stopping I had hoped the 18 months of it would have worn off by now.
I take magnesium but not regularly. I do not want to mask an issue if there is an issue that needs to be identified. I find a bottle of wine or a few large G&T (yes, quinnine) helps but medicating with excess alcohol is not the answer either.
could you see another GP in the practice and press for a scan - given you have had cancer -would they not play safe and do further investigations ? I had cramps on Tamoxifen but they stopped as soon as I stopped the tablets .
hi ladies… I am suffering with tiredness, joint pain but over the last few weeks with severe sole of feet pain. I have been on tamoxifen for about 15 mths now. Oncologist states tis hormonal as estrogen an progesterone r like WD40 for our joints. I am stage 2b invasive lobular and Ductal. I am very lucky as caught early. However just wish I cld get at least a few days of nothing hurting. No point going to GP as they just look at me as if to say” wha am I supposed to do about it” oncologist who is brill but again just reassures me that I have an excellent prognosis. I am so fed up, mayb just feelin sorry for myself. I am active, walking an gym. Thx for listening guys… hot flashes hae jumped into overdrive even though they say I am post menopausal now. I hae just turned 52.
Is there anyone who has decided NOT to take Tamoxifen? I am currently going through radiotherapy and have deferred taking anything at the moment. I am almost 72 and have severe osteo-arthritis - I need a hip and a knee replacement but currently need to be clear of all cancer treatment. I am really afraid of my joints being damaged any further. The percentages with or without Tamoxifen do not seem that different, and in view of my age, I’m not sure if I can see any future benefits.
I was on tamoxifen for 6 years (2014-2020) and during treatment had no real issues - I thought… At the end of 2017 and beginning of 2018 is when weird issues with joints started happening. I just thought it was age but then it never stopped and has preceded to get worse. I have gone to many dr’s now and I have nightmare stories of many. As of today July 2023, I have been told I have arthritis in my back, hips, shoulders, and hands and I have already had lower back surgery and full hip replacement. Still have to go to ortho for shoulder pain and hand dr for hands. I have read someone stating that after 2 1/2 years of being off tamoxifen they are having severe arthritis problems. I am wondering about anyone else?
