Letrozole and Joint Pain: What Users Say (Page 3)

• Mar...
• August 14, 2018

For Breast Cancer "I had stage 2 HER2-positive breast cancer. Did 5 rounds of chemo that made me so sick. Heavy bouts of diarrhea almost constantly and lost 20 lbs after 2 months of radiation every day. In 2015 I started letrozole, and at first it was nothing, now I feel so much joint pain in the early morning and then at night. I feel like I got hit by a truck. Stairs are unbelievably hard to master during this time. I’ve gained at least 20 lbs, which is hard to believe because I eat small portions. I have mentioned this to my oncologist team, and they don’t believe weight is a side effect. Wrong! It is most definitely. 2 more years to go, hopefully, there’s some improvement. I will take magnesium as suggested, we’ll see."

• Not...
• Taken for 1 to 6 months
• February 20, 2023

For Breast Cancer "Was diagnosed with stage 1 breast cancer in 2022. Had a lumpectomy. Then had a double mastectomy. I was told, “we got everything.” Then I was told to take Femara. I’m 54 and have arthritis from past sports history. Within 48 hours of taking this drug, my leg swelled up and was painful. Swelling subsided after 7 weeks. It’s a daily struggle to get out of bed due to the severe joint pain in my knees and hips. Hot flashes have returned. I have a general feeling of apathy. This is not living. Seeing the oncologist in a few weeks and advising them I’m not going to continue taking this. The daily pain of just walking around my home is not worth it."

• Jan...
• Taken for 2 to 5 years
• May 29, 2015

Letrozole for Breast Cancer, Adjuvant "Stage IIIc lobular breast CA, node, started generic Femara 18 months ago after radiation. Minor side effects - hair loss, nails, skin, vaginal dryness. Major - started out with tolerable joint, bone, and muscle pain. But about a month ago, these symptoms became severe enough to decrease my quality of life. My oncologist did blood work, all okay. She wanted a bone scan, but after reading reviews, this is the Femara, not bone cancer. She just has not had any patients do this, the literature is based on trials, not the general population. The literature (and she told me) the symptoms go away by 8 months! Not!! I also have MS (still mobile, but that has some same/similar side effects) but Femara more like arthritis. Knees, ankles. Stay on though!"

• Tul...
• Taken for less than 1 month
• February 6, 2020

For Breast Cancer "I had 2 tumors removed, 2 operations, radiotherapy, and medication letrozole. 28 days in taking letrozole, headaches, joint pain, muscle aches, hot flushes, and terrible mood swings. Hope to heaven this is not to be with me every day as I'm not sure how I can keep working."

• Kim...
• Taken for 1 to 2 years
• May 20, 2018

For Breast Cancer "I have been on letrozole for 13 months, which I began after a lumpectomy of my left breast, followed by four months of chemo and four weeks of radiation. For many months, my only noticeable side effect was fatigue. I always took it at night, so this was not too much of an issue. Within the last few months, I’ve been experiencing increasingly more painful joint and muscle pain in my shoulders and arms. Sometimes ibuprofen seems to ease the pain, but not always. I’m hoping it doesn’t get worse, for it is not easy to ignore. And yes, I’ve had weight gain also... the 20 lb seems to be the magic number, however, being menopausal, this was occurring with me anyway. I have a very active job with a lot of lifting and walking, but the weight gain won’t budge."

• Fat...
• October 31, 2016

For Breast Cancer "I have been on Femara since 6/4/15, almost 1.5 years now. At first, my only side effect was enhanced hot flashes and night sweats. I am post-menopause. No real weight gain, which has pleased my oncologist. I do, however, now have muscle weakness, joint pain in wrists, fingers, and knees. Also, I now have trigger finger in my thumb. I have seen a rheumatologist and have been put on diclofenac for joint pain. Even she feels like my aches are from the Femara. The meds she put me on are not working. I get just as much relief from Aleve and Advil. If anyone out there has a solution to the joint pain, please write in."

• Flo...
• January 6, 2020

For Female Infertility "I started at 5 mg letrozole to take days 3-7 of my cycle. My cycles were really long (50-65 days). Did 5 cycles at 5 mg and no pregnancy. Dr. said I was ovulating too late in my cycle, and this was the problem but ordered the HSG, all the tests. She also upped my letrozole dose to 7.5 mg days 3-7 of my cycle. I get bloodwork to check my progesterone (to ensure I’ve ovulated) on CD24, call the clinic the next day for the results, and I have ovulated every cycle, between days 16-19. PLUS I have normal length cycles (26-29 days) after starting the 7.5 mg letrozole! All my other tests were normal, husband's tests normal. This will be my fourth cycle on the 7.5 mg dose-fingers crossed! It does work though, inducing ovulation AND regulating cycles! The only side effects I’ve had, one actually just came on about 2-3 weeks ago (?) and that was the severe joint pain-both knees and both hips. My cramps have also been worse during my period-but that’s been the entire time I’ve been taking it."

• Apa...
• Taken for 1 to 2 years
• March 6, 2017

For Breast Cancer "I was diagnosed with stage 2 hormone-positive breast cancer in December 2015. I had a bilateral mastectomy in January 2016, just 3 days after turning 60. No lymph node involvement. I also didn't have chemo or radiation and started on letrozole in February. Didn't notice side effects at first. I think I was going through reconstruction with tissue expanders. This was very painful, and pain meds helped. Since having my implants and no pain meds, my joints ache, my memory is awful, I'm tired, and I have hot flashes. Sometimes depressed for no reason and just don't feel like doing anything. Have lost weight by strict dieting and biking, which helps. Now it's March 2017 and still cancer-free. Also added another BP med, a cholesterol med, and a low-dose pain med."

• Mic...
• Taken for 1 to 2 years
• October 7, 2018

For Breast Cancer "I have been on this drug for over a year now. This is my update to a previous comment. I stopped it on the advice of my doctor because of my hot flashes and sweats, joint pain. It was a month break. I started it up again, my hot flashes and sweats were subsiding, now they are getting worse again. My joint pain is going away. Some nights I may sleep four hours max."

• Nan...
• Taken for 1 to 6 months
• July 23, 2019

For Breast Cancer, Adjuvant "Stage 2 adenocarcinoma of the breast found on mammogram four years ago. Lumpectomy with clean nodes, then 5 weeks of radiation therapy. Started on Arimidex with severe hip and joint pain, constant hot flashes, insomnia. After 6 months of this, switched to Tamoxifen, bone pain improved, other symptoms unchanged. After 3.5 years, had pre-cancerous cells with thickening in the uterus requiring D&C. Switched to letrozole three months ago. Insomnia and hot flashes markedly lessened, but the back and hip pain is relentless. Chiropractor and ibuprofen help, but not sure I can tolerate this one more entire full year (plan is 5 years post-surgery, so one more year this month)."

• Mic...
• February 7, 2017

For Breast Cancer "Stage 3 breast cancer. Double mastectomy, chemo, radiation. Started letrozole about 5 months ago. Severe joint and muscle pain, especially in shoulders, arms, and hands. 20 lb weight gain. Seriously hate this medication but afraid to go off it because supposedly it reduces my recurrence rate. I'm trying acupuncture for the joint pains."

• Anonymous
• October 1, 2017

For Breast Cancer, Metastatic "It was toxic to me. Severe joint pain, insomnia, osteoporosis, increased cholesterol count, and spinal stenosis. I also lacked libido and energy. It is worth the small chance of recurrence. I am still in pain, and I have been off of it since the end of April. It has impacted my life enormously; I regret taking it."

• Ter...
• Taken for 1 to 6 months
• December 3, 2016

For Breast Cancer "My 2nd breast cancer 8/16, 1st 2005 DCI stage 1 Rt. breast. 2nd in left breast. It is primary, not metastatic, but due to the large size tumor, the surgeon wants to shrink the tumor to try a lumpectomy. On Femara 2 months and feeling very blessed. Sonogram follow-up shows tumor shrinking and this allows me the holidays with family before surgery. I have the typical side effects: joint pain, daily hot flashes, nightly sweats (fans everywhere, portable in my purse), and some hair thinning, so I keep it in double braids to save the vacuum and shower drains. I can't walk far at one clip due to fatigue, so I use a walker with a seat to allow daily exercise. Changed diet and losing weight. Grateful for medication and will keep taking it as long as the tumor is shrinking."

• KTa...
• Taken for less than 1 month
• April 19, 2018

For Female Infertility "I took two 2.5 mg pills at night for cycle days 3-7. I had no side effects the first 3 days. Then, the 4th day, my right knee started hurting when going up and down stairs. It hurts every once in a while, so I thought it was no big deal. Well, now it is unbearable. I can hardly move my knee without pain. It hurts to drive, cross my legs, walk, etc. I have been off this pill for 2 full days, and it is getting worse, not better. Then, this morning, I had a severe headache. Quite possibly the worst one I have ever had. It took all I could do to get out of bed. I also had severe joint pain in my shoulders. I have never had that. I am praying that the pain subsides, or I may not be able to drive/work. The only benefit is that my insurance company (Anthem) covered this pill 100% because it is labeled as breast cancer preventative. This is nice, as fertility drugs are not typically covered."

• Anonymous
• Taken for 2 to 5 years
• March 13, 2021

Letrozole for Breast Cancer, Adjuvant "Bone pain, trigger fingers, joint pain, hip pain, wrists/thumbs repeated tendonitis, low energy. From anastrozole to letrozole, issues persist, worse over time. Still on it, but had to stop working. Managing to stay on as benefit outweighs risk."

• Eri...
• Taken for 2 to 5 years
• November 19, 2024

For Breast Cancer "I started taking Letrozole Accord brand after lumpectomy. After about six months of taking it, I started experiencing joint pains in my hips, knees, ankles, and fingers. I suffered through the pain out of fear of the cancer returning. Around the second year, I found it so difficult to climb the stairs in my house, I almost had to crawl. It wasn’t until my pharmacy switched the brand of Letrozole that I would have any relief. They said they were not carrying the Accord brand, probably due to better pricing. I was hesitant to try a new brand but basically didn’t have a choice. After about a month on the new brand, I noticed less aching, and I was able to stand from a chair more easily. I hate I suffered for so long. I am convinced the manufacturer makes a difference in the side effects."

• Old...
• Taken for 1 to 6 months
• March 10, 2023

For Breast Cancer "It was okay for the first month. I had hot flushes that subsided after a few weeks. Then the pain in my joints, lack of energy, and low mood kicked in. I didn't feel like doing anything, which was just as well, as I was in a lot of pain just walking around the house. My hips, knees, and lower back were the worst. They hurt all the time - even when I lay down to sleep. After five months of suffering on Letrozole, I was recently told I am pre-diabetic. I have just stopped taking the drug and have a phone appointment to discuss with my GP."

• Anonymous
• July 27, 2022

For Female Infertility "I was prescribed letrozole 5 mg x 5 days on cycle day 3-7. I began feeling ill on the 3rd day of taking the medication. I had really bad muscle/bone/joint aches, headaches, hot flashes, abdominal pains, lack of appetite, dry mouth, cough, dizziness, nausea, and fever. I called the pharmacy to ask about side effects and was told to complete the 5-day regimen since I only had 1 dose left. No sinus symptoms or sore throat, but I went to get COVID and flu tested and was negative. Blood work showed elevated liver enzymes. No signs of infection. Still having headaches and now stomatitis. Every day I am feeling a little better. I read side effects can take 7-10 days to subside. I am on day 6 and still don't feel like myself. Praying I do end up pregnant after experiencing almost every side effect possible. I did have an increase in follicle sizes from the medication."

• Ini...
• Taken for 2 to 5 years
• July 24, 2021

Letrozole for Breast Cancer "Took Femara for 2 years+. Just saw my oncologist recently, and she asked about the joint pain. It has been awful, my joint and muscle pain is excruciating sometimes. I am a young 61 who felt 85. No more snow skiing. Could barely get out of bed many days. My oncologist suggested I take a week off of it, and if it improved the pain, she would prescribe Aromasin. Sure enough, pain all gone, and now I have been on Aromasin a week. Fingers crossed!"

• Ral...
• Taken for 10 years or more
• June 14, 2024

For Breast Cancer, Metastatic "Metastatic breast cancer - L5 vertebra metastases diagnosed in October 2008. I started Femara in November 2008 and took one daily until July 2023 when I switched to generic: Letrozole. As long as I took Femara, the adverse effects were tolerable: at first there were hot flashes (about 2 years) with fatigue, hair thinning. Since last year, since I have been taking the generic Letrozole, I have had joint pain, burning sensation in the soles, bilateral carpal tunnel syndrome, sensitive peripheral neuropathy. Since March 2024, I have developed a sensation of facial paresthesias (chin/lower and upper lip), numbness and tingling in the skin of my arms and legs bilaterally. However, almost 16 years on from my initial diagnosis I have no signs of breast cancer recurrence so I will continue with Letrozole"

• Ano...
• Taken for less than 1 month
• November 12, 2019

For Female Infertility "I just started taking letrozole for help getting pregnant. I'm on 7.5 mg on Day 3 and 2.5 mg on Day 4. I had to decrease the dose due to the side effects. I have joint, muscle, and bone pain, tender breasts, fatigue, and headache. It's a good thing that I am not working at this time. I am wondering whether or not to continue the course."

• kel...
• April 10, 2017

For Breast Cancer, Adjuvant "I had breast cancer lobular a year ago, 1.8 cm, 4 lymph nodes involved, modified mastectomy, chemotherapy, then 34 radiation, then letrozole and Zoladex. When combined, the letrozole and Zoladex were really hard on me, causing low WBC and elevated liver enzymes. I have a lot of joint pain, but I decided to remove my ovaries and tubes. After that, I will just need to take letrozole. I feel much better, liver enzymes okay, WBC normal now. Every morning I will get an ACAI bowl for breakfast, it really helps. I just have mild hot flashes and mild muscle aches. If I get up in the morning and move around, they will go away. Also, I changed my diet to completely vegan, I lost 9 lbs and feel more energy. I went back to Taiwan to have my ovaries and tubes removed. Pain instantly went away after surgery."

• JFi...
• Taken for 5 to 10 years
• May 31, 2021

For Breast Cancer "Had stage 1 breast cancer in January 2015, started on tamoxifen. Oncologist had me switch in 2017 to letrozole. Have wet macular degeneration. I am being treated for that with injections. I have been having lots of joint pain. Now I have noticed I had a Dexa in 2019, and now in 2021 have been diagnosed with osteoporosis. So since the beginning of 2021, I have started to become a hot mess. Talked to my oncologist, and we now are stopping letrozole. I have had over 5 years of drugs. I feel the side effects of the drugs are damaging, that you sometimes have to wonder if it’s worth it. At 61, I am extremely active, walk between 8-10 miles during the week at work, along with 3 sets of steps 3 times daily. I also exercise at night when I get home. Hope they can somehow work to improve these drugs."

• Ste...
• Taken for 6 months to 1 year
• July 7, 2021

For Breast Cancer "I took this med for 6 months. Around the 6-month mark, I got carpal tunnel in both hands. I literally could not use my hands or bend my fingers. My hands were so sore and swollen. I had to get steroid injections in my wrists to alleviate the pain. My doctor just switched me to Aromasin. We will give that a try and see if it's better. I would not take letrozole again."

• Lis...
• Taken for 1 to 2 years
• March 12, 2023

For Breast Cancer, Metastatic "I was diagnosed with ER-positive de novo lobular breast cancer with bone metastasis in 12/2020. I have been on letrozole since 2/2021. My condition is stable. I also get a liquid biopsy every three months that shows no evidence of disease, even though my CT scan still shows it in my bones. I have hot flashes from this medication and joint problems with my hands, but other than that, I feel great! I hope it continues to work as my first line of treatment."