Exemestane and Insomnia: What Users Say

• gre...
• Taken for 1 to 6 months
• May 4, 2020

For Breast Cancer "I've been on exemestane for 3 months now. I switched after having side effects from Arimidex. The exemestane has been way worse. I'm crying as I read all the reviews that other users have experienced. I feel so alone. I'm a very active person. I've never felt so awful in my life. I can't explain it to anyone. My fingers and wrists are so sore and swollen. My hands fall asleep all night long. I wake up constantly. I think I'm so tired from not getting any sleep. I get out of bed in the morning and I can barely walk. I stand up from sitting down and everything hurts! Steps are the worst! I'm 43 and I feel 93!! I was an avid mountain biker and runner before this. It's so disheartening."

• Shi...
• August 18, 2016

For Breast Cancer "This drug is perhaps saving my life, but who knows - and at what cost? Right now I seriously question the value of treatment that has such violent side effects. I'm experiencing: bone pain, extreme hot flushes/cold shivers, chronic constipation, vaginal dryness and discomfort, cognitive impairment, inability to concentrate, insomnia, significant weight gain (18 lbs in 8 weeks), rapid aging, facial hair growth, irritability, depression (big surprise there). It really angers me to see the glib way doctors document their research on this drug, claiming it is 'well tolerated'. I'm sure there are exceptions but in my personal experience so far, every woman I have met who's taking it complains of similar symptoms."

• Jea...
• February 12, 2015

Exemestane for Breast Cancer "Had a lumpectomy for Stage I advanced breast cancer followed by radiotherapy. Then was put on each of the aromatase inhibitors, letrozole and the other one. Basically, I was unable to continue either after 10 days due to increasingly debilitating dizziness, nausea, crying, etc. Then put on tamoxifen, and I developed lymphedema. So tamoxifen was discontinued but still have moderate lymphedema. Then put on Aromasin. Initially able to tolerate it but increasing lightheadedness (four minor car accidents) and debilitating joint pain (everywhere), poor sleep somewhat countered with Lyrica. I had already been diagnosed with widespread arthritis in the joints and the pain with Aromasin has been intolerable, so discontinued, against medical advice."

• Del...
• Taken for 2 to 5 years
• May 29, 2016

For Breast Cancer "After 2 years, I finally realized why my elbow joints were in such pain. I was also waking up frequently throughout the night, but then would fall asleep at 6 am and not want to get out of bed. By 10 or 11 am, I would force myself to get up! And I couldn't even think about exercising or taking my walks. My oncologist took me off for a month to see how I feel, and after 3 weeks, the difference is remarkable. I'm sleeping a full 8 hours, my joints stopped aching, and I'm often getting out of bed early, which I haven't done in 2 years. Now I realize that on this drug, I wasn't just tired, I was depressed. Most days I felt like crying (in spite of having a fantastic happy life) and didn't want to get out of bed."

• Anonymous
• July 7, 2009

Exemestane for Breast Cancer "After surgery I was pronounced cancer-free but still put on Aromasin. I found the side effects difficult, especially insomnia. My schedule is busy, and this, plus muscle/joint pain, is hard. I went off for several months during a vacation and felt far better. I returned to taking it, and almost immediately the side effects returned. I have very mixed feelings about continuing. My health insurance covers it, so thankfully expense is not an issue. I will probably continue as statistically the drug has proved valuable."

• Anonymous
• October 29, 2011

Exemestane for Breast Cancer "I took two years of Tamoxifen, without much side effects that I am manage. I took Femara for one year and could not even turn my head and had joint pains to the point I could not turn my head when I was driving. Now I just got off exemestane after 6 months as I cannot sleep even with sleeping pills. I am five years out from chemo and doctor still wants me to take the pills for another year and four months."

• Anonymous
• Taken for 1 to 6 months
• March 5, 2016

Exemestane for Breast Cancer "Have taken three different drugs of the same nature and purpose. This has the mildest side effects. Nausea, sweats, insomnia, headache, joint pain, increased appetite, lethargy, dizziness are some of the side effects I am experiencing."

• Lil...
• Taken for less than 1 month
• April 20, 2017

For Breast Cancer "My oncologist switched me from letrozole to exemestane because I was having some bone loss. I was a little more tired and achy on the letrozole, so I assumed the same would happen with exemestane, but oh my gosh, what a difference. I gained 6 lbs in a month, experienced horrible headaches, pins and needles in my hands, back pain, fatigue, waking up in the middle of the night, hot flashes, ringing in my ears, and blurry vision. I'm switching back to letrozole, at least the side effects are tolerable. I guess everyone is different, if it works for others, awesome, but not for me. These reviews are so needed in our for-profit health care system. Doctors won't tell you or don't know about all the side effects, and who even knows about the long-term ones?"

• Dox...
• December 29, 2014

For Breast Cancer "This is my 3rd medicine for reducing estrogen. I have been on it for 6 months, after going through surgery and radiation for Stage 1 breast cancer. It is much easier than the other medications. BUT I'm still not sure if I will continue. Since I have started on this medicine I have had the following: blood clot in lung, headaches, nausea, loss of appetite, pain in my right side, insomnia, jaw pain, ringing in ears & some imbalances, these are new just since starting this medicine. (Pain in joints is something that is better on this medicine than others.) As I have already tried the other medications available to me this is my only option except taking nothing."

• Deb...
• October 10, 2011

For Breast Cancer "On this medication for the past 4 months. Still unable to sleep at night, hot flashes, but a lot nicer than the other medication I was on. The only side effect that I can deal with is the muscle pain that it causes in my legs. I also notice my skin being oily and breakouts on my face."

• Mz ...
• November 21, 2016

For Breast Cancer "Have been on this medication about 4 months. I was wondering why I couldn't sleep and have gained an excessive amount of weight. I read the reviews, which helped me considerably. I wake up with headaches in the morning. I take Excedrin, it helps. My skin breaks out weekly. My right arm is numb and feels like no circulation. I believe I am going to take myself off this medication. I can't afford to keep buying clothes. Oh, by the way, my sugar has gone up. I've never had this problem before. I believe this medication is the common denominator for most, if not all, my issues."

• mar...
• December 6, 2016

For Breast Cancer "This is the second inhibitor that I have tried. Started off great, but now after 3 months, am wondering if it is all worth it. The tiredness, insomnia, and swollen hands and feet are bad enough. The worst part is the confusion. I go to appointments at the wrong times, can't remember some of the grandchildren's names! Along with the hot flushes and nausea, not fun. Then the doctor tells me that I need it for 10 years and just work through the side effects!"

• She...
• July 5, 2015

For Breast Cancer "Kidney problems? Carpal tunnel numbness? Insomnia? (Hot flashes are a given, I take gabapentin and venlafaxine, which helps.) I just started exemestane after taking tamoxifen for three years. I started the new drug about a month and a half ago. I had similar side effects when I started tamoxifen but never had kidney pain. I am in a lot of pain, which is covering about a 6-inch radius on my side. I am not 100% sure if it is pulled muscles since it came on overnight, but I don't recall any injury. Has anyone had this issue?"

• Kat...
• Taken for 1 to 6 months
• March 18, 2021

For Breast Cancer "It was really helpful to read the comments here as I thought I might be the only person to have a bad experience with exemestane. I switched to exemestane after 2 years on letrozole. I was having severe muscle pain with letrozole and heard from a variety of sources that a switch to exemestane would cure all my ails. Well, I did not have muscle aches, but the other side effects were worse - light-headed, headache, spaciness, and forgetfulness (possibly because of the insomnia from the drug). I did not feel like myself at all and quit after one month since I thought I might not survive the 6-month adjustment period. It was also 4x as expensive as letrozole. At least I can take ibuprofen (although it has its own issues) to counteract the muscle pain. I'm sorry any of us have to take any of these medications!"

• Kat...
• Taken for 2 to 5 years
• September 2, 2021

For Breast Cancer "I have been taking exemestane for 2 1/2 years for DCIS. I have experienced severe joint pain, insomnia, hair loss, and weight gain. I started having cardiac symptoms (increased blood pressure, increased cholesterol, and heart palpitations) and decided to discontinue the medications. I would rather take my chances than have a cardiovascular event-heart attack or stroke."

• Joa...
• Taken for 2 to 5 years
• August 26, 2016

For Breast Cancer "Exemestane is the 3rd anti-estrogen medication I have taken. I was not able to take Tamoxifen due to a bad interaction with another medication I take. The first 2 other aromatase inhibitors I took gave me severe side effects. Exemestane has been the best so far, but it does give me insomnia and then fatigue, and headaches. My main problem is the expense! Although it is generic, it is much more costly than the other medications I was on, and I can't understand why!"

• Lin...
• Taken for 2 to 5 years
• September 23, 2022

For Breast Cancer "I have been on this 2.5 years. I hate it! I have put on so much weight in my midsection that I don’t even recognize my body anymore. Hot flashes, restless sleep, and nerve pain that travels to different parts of my body. I’ve always had headaches, migraines, so I can’t say that it’s from the medication. I am so tempted to just stop taking it. I mean, 2.5 years seems sufficient. This is awful."

• Con...
• Taken for 6 months to 1 year
• July 20, 2022

For Breast Cancer "So many reviews of this drug with horrible side effects. My journey started last May with stage 1A breast cancer, ER positive. Lumpectomy with 2 nodes removed in June. Started radiation in August along with Anastrozole. Started having burning, pins-and-needles feeling in my face, then went to my head. Every few weeks it spread to a different part. Radiation oncologist and medical oncologist said no, it was not radiation or hormone blockers causing this. I suffered from hot flashes, night sweats, weight gain, insomnia, fatigue, diarrhea, low libido, depression, bone pain, confusion and memory issues, vaginal dryness, and hair loss. I kept telling doctors it was the medication, but they insisted it was not. In December, the oncologist switched me to exemestane because I complained. The bone pain lifted but I started having frequent urination, bladder issues. Had a severe sore throat for a month. Started having itching from chest up, so the oncologist finally took me off. I have an appointment tomorrow."

• Kat...
• Taken for 1 to 6 months
• July 31, 2021

For Breast Cancer "I wish I had read this before trying exemestane. I was diagnosed with 1B cancer, some cells in one lymph node. Had radiation because of that and got pneumonia-like pneumonitis. Given steroids, which I loved. Doing yoga, walking, and Pilates. Then put on Arimidex. Awful joint pain, among other things. Femara. Same. My gynecologist suggested exemestane, which worked for her. For me, who usually experiences no drug side effects, it was a horror show. Gradually waning ability to exercise, as arthritis-like symptoms worsened. Depression. Trouble sleeping. Then, dizziness. It was no life, so this week I decided to risk cancer return in order to feel somewhat normal. My doctors were great-each said it was better odds to take it, but that cancer cells could already be floating around and you never know who is going to have a recurrence. Now my question is: How long does it take to feel better? Does joint pain and dizziness go away or just get better?"

• Anonymous
• Taken for 6 months to 1 year
• October 15, 2021

For Breast Cancer "Been on Aromasin for 7 months and supposed to take it for 10 years. Not even 1 full year in yet, and I'm falling apart. I'm 38 and was a healthy, active young woman prior to cancer and meds. Now I'm borderline depressed, extremely fatigued and tired, achy joints, mean, moody, and insensitive, lethargic, no energy nor interest, not sleeping despite taking Gabapentin, thinning hair, genital/urinary problems, and unrelenting, unforgiving hot flashes. I'm struggling to work my normal full-time job and will have to go down to part-time. Married with 4 kids and will continue to take in hopes of reducing a recurrence."

• Anonymous
• Taken for 5 to 10 years
• March 16, 2023

For Breast Cancer "I have been on this for over eight years. I hate it! It’s really starting to take a toll on my physical and mental state. My skin is a mess (skin tags, yuk), weight gain, insomnia, facial hair, and thinning hair. I need to come off of it. My doctor recommends I take it for 10 years."

• SCG...
• Taken for 2 to 5 years
• October 31, 2024

For Breast Cancer "Lots of side effects but tolerated better than Letrozole or Anastrozole. After 3 years, the side effects got worse for me and include mouth sores, terrible facial cystic acne, small bumps all over my neck, metallic taste that won’t go away, insomnia, numbness in fingers and hands, swollen hands, feet, legs, severe joint pain in shoulders, knees, lower back pain, horrific hot flashes/flushes/sweating, no libido, some severe headaches, extreme fatigue, bad nausea all during the first year. Overall quality of life is affected, and the oncologist has done zero bloodwork, stating it was not necessary per NCCN guidelines - this medication has caused a marked increase in osteoporosis and osteopenia in 3 years. IMO, this medicine is the only option other than Tamoxifen, which my oncologist said may cause blood clots and kidney issues."

• Deb...
• March 14, 2015

For Breast Cancer "Severe hot flashes, unable to sleep, joints hurt, and tired all the time. Have had breast cancer twice, so I hope this works."