Tamoxifen and Joint Pain: What Users Say

• I...
• Taken for 6 months to 1 year
• August 16, 2015

For Breast Cancer "I've been on this drug for nine miserable months now. I had said I would try it for one year, and I'm not sure I can make that. It appears that quality of life is not something my doctor cares about. It's almost as if he's being paid by the tamoxifen people because he won't even listen to anything negative about the drug. My hot flashes are unbelievable. My joint pain makes it difficult to walk. I haven't slept in nearly a year. This drug makes life not worth living."

• DOL...
• Taken for 1 to 6 months
• January 29, 2014

For Breast Cancer "I have been on Tamoxifen for four months now & have been told I will be taking it for the standard 5 years. I have had hot flashes, no period (that stopped after my second chemo in April 2013), sex drive has disappeared (also from chemo & Tamoxifen combined) and I have had pelvic pain (tends to be more apparent when I lay on my back), joint pain (in my elbow and where legs join pelvic), and lower back pain. I am hoping that some of these side effects will soon subside. Wow, it is amazing all the different side effects that Tamoxifen causes for people. Reading a lot of these comments has made me now realize that all the pains & aches I have been having truly are side effects from the Tamoxifen. It's nice to know I'm not alone!"

• Tam...
• Taken for 2 to 5 years
• August 1, 2017

For Breast Cancer "This drug is nonsense. They tell you the side-effects are minimal and easy to deal with - as long as you tell your doctor. Well, it's been three years and the only thing the oncologist has recommended for me is psychotherapy (apparently because I complain too much). Now I have to have a hysterectomy because I have 'unusual' growths in my uterus. I look like I'm seven months pregnant and am now having to shop in the maternity department. I'm not pregnant, by the way. Every joint in my body aches and I sweat at least a gallon a day. I've had to buy a new mattress and pillows since I ruined them (with night sweats). To top it off, my oncologist doesn't think any of this is caused by Tamoxifen. I am tearing out the little bit of hair I have left."

• Nee...
• Taken for 2 to 5 years
• August 24, 2015

For Breast Cancer "I started taking Tamoxifen in September of 2013. The side effects kicked in after about a week. My fingers completely seized up, and if I crouched down, I couldn't get up again! The joint pain was unbearable, so my oncologist decided to take me off it for 6 months. He then introduced it gradually, 10mg a day instead of 20mg. So far, so good! After 6 months of that, he put me back up to the full dose and the pain didn't return! I've been on it ever since. My periods are here and there but are quite heavy and painful when I do get them. I wish they'd just stop. Just keeping everything crossed that the cancer stays away. Good luck to all you fellow survivors and keep fighting the fight!"

• Mel...
• Taken for 1 to 6 months
• December 18, 2019

For Breast Cancer "I had grade 1 breast cancer in Feb and had lumpectomy and 2 lymph nodes removed. I had good news in June that they were all clear after radiation. I'm now on tamoxifen since July. At first, there were no side effects. Then the sweats got worse, I had trouble sleeping, pain in my back and fingers. Then I had a cramp-like pain in my leg. I had the all clear from GP that leg was fine. I went to Mexico in August and both my legs were so painful that I had to limp. In the mornings when I came home, I went straight to a&e where I was told I had blood clots in each lung and the right one inflamed. I'm now on blood thinner injections for 6 months and may need tablets after that, all because of tamoxifen I was told. Has anyone else experienced this?"

• Jil...
• Taken for 1 to 2 years
• January 19, 2015

For Breast Cancer "I've been on Tamoxifen for a year now. A few joint aches but all in all not too many problems. When I started the medicine, I was a Pescatarian (only ate fish or seafood). I have maybe two hot flashes at night. I take my pill at 5 pm daily. I was told I need to be on it for 10 years. Considering the alternative, I don't have too many bad things to say about it. Glad to be cancer-free!! Hope this keeps me that way. Turning 50 in three days!"

• Ang...
• July 4, 2016

For Breast Cancer "It's one year I'm on Tamoxifen. I will manage all side effects that I have such as hot flashes, joint pain, back pain, mood swings. My goal is to live longer and see my son's future. I'm a 46-year-old. I try not to think about pain and side effects until I'm really tired from pain. The only thing I'm scared of is pain. The rest I will manage. Good luck to all of you! Life is beautiful, and fight for it."

• mer...
• Taken for 1 to 6 months
• October 8, 2012

For Breast Cancer "Going on month two now... It made me very tired (loss of vitality), but it is much better now, had constipation but increased my fiber, water, and exercise - all is well as long as I do this, joint pain in my hips but is better with exercise, nausea - I had a little when I started, it got better, and now it is back and worse - I have started taking Pepto-Bismol, and it has helped - you can try mint (candy, gum), anxiety - happens occasionally but so far tolerable. It is always best to speak to your health professional before trying the above."

• Tou...
• September 14, 2015

For Breast Cancer "I have been on Tamoxifen for 40 days. Here's my story: I was diagnosed with stage 1 breast cancer (98% estrogen fed) in April 2015. I did not need chemo or radiation. I was told after surgery (June 2015) that I had to take 'Tommy' for 5 years. I fought the idea, but eventually decided to give it a try. So far, the main complaint I have is fatigue. I take it at night and that helps. Some joint pain, vaginal discharge (clear mostly), and the BEST thing about Tommy is that it has calmed me down. I am about 30% of the energized person I was before. I no longer feel like I need to solve the world's problems in a day. So, I can honestly say, that's a big plus! WEIGHT CHANGES: I became Vegan and did not lose any weight! :("

• pin...
• January 16, 2017

For Breast Cancer "I was on tamoxifen for 5 years. It drove me into severe depression. I was delusional to the point of being in a psychiatric hospital for 1 year. No doctor at the time could find out why I was as I was! I had water retention, weight gain of 25 kilos, fluid on my lungs, which caused coughing to the point I felt I was suffocating, insomnia, joint pain, nausea, and hot flushes. And to crown it all, skin disorders, of which the rash and sores made me look like I had HIV. Bicarbonate of soda, lemons, and ginger have improved my health!"

• Mst...
• Taken for 5 to 10 years
• February 6, 2017

For Breast Cancer, Adjuvant "I had stage 2 grade A IDC with trace evidence in the sentinel node. I've been on tamoxifen for 5 years, with 5 years left to go. I currently have the following side effects: hot flashes, night sweats, insomnia, fatigue, blurred vision, hair loss, hair thinning, hypertriglyceridemia, bone and joint pain, and cannot tolerate drug brand changes, and have had to have a total hysterectomy."

• Geo...
• Taken for 2 to 5 years
• October 6, 2019

For Breast Cancer "I was diagnosed with stage 2 ductal carcinoma. Lumpectomy and 2 lymph nodes were removed. I was started on tamoxifen 30 days before my surgery. Since my cancer was hormone-driven, tamoxifen was required in addition to 25 rounds of radiation. Hot flashes that I can feel coming on worse with stress. Problems with my fingers and pain in my joints. My fingernails crumble and splinter easily. I am always fatigued and have to drink an energy drink just to function. I have had 6 biopsies since my surgery. I have a lot of scar tissue. My skin still burns 4 years after my radiation. I will be glad when I am off this drug. God bless all of whom that are going through it. One lady said to me, more birthdays."

• Pam...
• Taken for 6 months to 1 year
• September 13, 2015

For Breast Cancer "I have been on tamoxifen for almost a year now. I experience hot flashes, which can be unbearable at times. I have joint pain, which makes it hard to walk. I also have gained about 10 to 15 pounds since I have been taking this medicine."

• Anonymous
• January 5, 2012

"I started taking this medicine after an abnormal mammogram and biopsy found precancerous cells. I have really bad hot flashes several times a month, some joint and leg pain. My menstrual cycle is regular, but I experience nosebleeds the week before. My hair started to thin about 3 months after starting this medication, that has pretty much subsided, and I am going on one year now. I do get a little more irritable than usual, but all in all, things are pretty manageable now. So only 4 years to go!"

• Dar...
• Taken for 6 months to 1 year
• March 30, 2022

For Breast Cancer, Prevention "I was diagnosed with stage 1 breast cancer in March of 2021. I had a right breast mastectomy with an implant. I was put on 20 mg of Tamoxifen in July. By September, I had so many reactions that I could not do daily activities. I was so tired that I would fall asleep if I sat down. I started having migraine headaches, which I never had. I requested to cut my dose in half. My symptoms were better, and I could deal with them. I still had leg swelling, joint pain, and fatigue. Daily exercise helped with this. My doctor and I agree that my body was probably overloaded. I am fortunate that my risk is low. My advice is to do your research and discuss your concerns with your doctor. As of March 2022, I am trying another estrogen blocker. If I have severe symptoms, I will go back on 10 mg of Tamoxifen."

• Anonymous
• Taken for 5 to 10 years
• March 22, 2023

For Breast Cancer "I was diagnosed in 2014 with Stage 0, DCIS. I had a lumpectomy, radiation, and Tamoxifen for 5 years. Five years became nine. In 2020, I was diagnosed with Lupus SLE due to symptoms such as hair loss, muscle fatigue, and joint pain. Blood work confirmed the diagnosis. My symptoms worsened over the next couple of years, you name it, I had it and blamed Lupus. My ONC just took me off of it after nine years (not 10, but 9 with no reason). My Rheumy (for Lupus) just told me she's excited to see how this will affect me. I went home and googled the long-term side effects of Tamoxifen, and within two days of stopping it, I noticed a significant improvement. I am no longer shuffling around like a 90 yo in the mornings (I'm 60), no more achy, throbbing, fiery feet at night, no puffiness, etc. My PCP told me when I was diagnosed with Lupus she didn't think I had it that bad, and all along I've thought to myself, WOW, if this isn't that bad, I would hate to see what bad is like."

• Tea...
• Taken for 1 to 6 months
• November 5, 2019

For Breast Cancer "Horrible joint pain in wrists and arms. Unbearable... I feel as if my wrists are broken."