Tamoxifen and Hair Loss: What Users Say

• 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."

• Van...
• April 15, 2016

For Breast Cancer "I was diagnosed with DC breast cancer in November 2014. After 6 chemo treatments, a double mastectomy, and 33 radiation treatments, I have been on Tamoxifen for 7 months. The hot flashes are getting better at times, and I'm taking Gabapentin for my hot flashes. The back and hip pain is horrible. I have put on 20 lbs. I go to the gym 3 to 4 times a week and ride my horse 3 times a week, but all forced. I feel bad pretty much all the time. Always sick to my stomach. Working out makes me feel more sick, but I push through it anyway. No matter what I do, I can't drop weight. I'm in the process of losing my eyelashes for the 4th time. I used to have pretty, thick hair, and now it's thin. My memory is horrible. I hate this life."

• Pat...
• Taken for 1 to 2 years
• October 30, 2018

For Breast Cancer "Had hot flashes or hot all the time, thinning hair, overwhelming fatigue, pain in the jaw, confusion, and strange thinking. Thought and said things differently than I normally would have, and I couldn't sleep even though I was always tired. Didn't have any energy, and I always had energy before, but it was a chore just to make myself move. Kept saying I'm so tired. Just found these sites, and it is helping me to understand how tamoxifen affects so many so differently. Thank God my husband and family were kind during this time. I was on tamoxifen about 20 months when I asked the doctor to let me get off of it, and since I am 80, she decided to honor my request."

• Mon...
• Taken for 1 to 2 years
• March 15, 2018

For Breast Cancer "For those of you who only had menopausal side effects - hot flashes, night sweats, insomnia, dry skin - great. I had all that plus anxiety attacks, depression, headaches that made migraines seem like a walk in the park, hair loss, muscle aches and cramps, fatigue that made it difficult to just walk to the bathroom, blurred vision (I had already had cataracts removed). The list goes on and on, but to compound it, when I told my doctors, they said, 'Oh, tamoxifen doesn't cause that.' I gave them the list of side effects with the ones I had marked, and it was thrown in the wastebasket in front of me. Now that I have quit taking it, the side effects come and go. They can and do return over and over again about every two to three months and last two to three months. My doctors told me none of this, so if you are contemplating taking it, do the research first. I wish I had."

• 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."

• 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."

• Mar...
• September 15, 2015

For Breast Cancer "Was for 5 years, increased to 10 years, I'm in year 7. Had 3 lumpectomies within a 3-month span, had chemo, radiation, plus 1 year of Herceptin for ductal carcinoma in situ T2 HER2+. I am alive and plan on staying that way. After much research and talking to doctors, the conclusion is that chemo and tamoxifen seem to have precipitated other chronic illnesses: chronic fatigue, fibromyalgia, osteoarthritis, osteopenia, clinical depression, gastroenteritis, worsened IBS, and PTSD. My legs, lower back, and fingers are usually swollen and usually in pain. I wanted off the tamoxifen due to the weakness in my legs and fatigue. No other was as effective in inhibiting estrogen. I still lose my hair, gained 130 lbs, I'm in a wheelchair. I'm alive. 3 years to go."

• Nan...
• Taken for less than 1 month
• January 9, 2020

For Breast Cancer, Adjuvant "I just started taking Tamoxifen about a week ago. I am always nauseous, I am noticing my hair thinning since I started, my jaw hurts, and the pelvic pains are so uncomfortable. I am always crying and saying things I would never say. I will need to speak to my doctor and see if there are other alternatives. Hopefully, there is."

• 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!"

• Ash...
• Taken for 2 to 5 years
• April 12, 2020

For Breast Cancer "I was diagnosed with stage 2 DCIS in 2015. I had a mastectomy, chemo, and radiation. I have been on Tamoxifen for 4 years. I’ve experienced hot flashes, vaginal dryness and tearing, dry mouth, urge incontinence, thinning hair, etc. But the hair on my legs is also thinner!"

• 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."

• Jmh...
• Taken for 1 to 2 years
• March 26, 2023

For Breast Cancer "I started tamoxifen one year ago. For the first four months, I had not one side effect, but then I slowly started getting side effects. I was severely depressed, angry, and agitated, had hair loss, sweats, chills, insomnia, tiredness, aches and pains in my ankles and knees, pins and needles, and cramps, and the worst is the UTI, but when you have tested, it’s negative. I just get the side effects of UTIs, so can’t have any medicine as there is no infection, hmmm. It’s easy to take. I’m on 20 mg daily for 10 years as I’ve had invasive lobular breast cancer and had some lymph nodes removed as well. The only good thing with this drug is I haven’t had a period in five months or any period cramps. I’m 52 years old and was not menopausal, but I’ve found different brands give different side effects, and trying to get the brand you prefer is much harder than people think. This is a potent drug that is doing at the minute what it’s supposed to do, so I will carry on taking it."