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Letrozole side effects (DRY EYE, Fatigue)

I had no side effects for the first 6 months on Letrozole. I have now been on it for 16 months and feel terrible. My first side effect was joint pain. That is now better that I am taking Glucosamine Chondroiton and omega 3 fish oil. I had some symptoms of dry eye disease previously and have been using over the counter eye drops for this recommended by my eye doctor. However, now the dry eyes are very achy, which leads to headaches and fuzzy vision. The over the counter drops are no longer effective. I also am extremely fatigued and have had a vaginal yeast infection recently. These side effects have suddenly appeared in the last month. My oncologist says that these are rare side effects, so she does not believe that they are related to Letrozole. There is plenty of evidence online about these side effects. I am so discouraged and can't imagine almost 4 more years like this. My Oncotype DX score was 20. It was considered intermediate risk then, but oncologist tells me has now been classified to low risk with the latest study. I had lumpectomy and radiation. No genetic involvement, but strong family history of breast cancer.

Comments

  • findingoptimism
    findingoptimism Member Posts: 31
    edited July 2019

    I am not on Letrozole, but I have had (for me) terrible dry eye on Tamoxifen. Surprisingly enough, I found a difference in the severity based on the brand of generic I used, but was still struggling. After talking with my eye doctor, I bought myself a moist heat eye mask on Amazon. You microwave it for 20 seconds and then put it on your eyes 2x per day for 10 minutes each. The suggestion was that it would take about a month for the oil glands above the eye to unclog. For me it took about 5 weeks, but I saw improvement every week so I saw this as a god send. I also use night time lubricating drops. In this process I have tried 5 varieties of eye drops and washing my eyes with baby shampoo, but found these did not help the problem. I am now trying to figure out how to step down from the regimen but not lose my newly clear eyes. Hope this helps.

  • aussieched
    aussieched Member Posts: 87
    edited July 2019

    I took letrozole (Femara) for 9.5 years and can certainly identify with your problem of joint pain and dry eyes. The joint pain was terrible at times and seemed to move from place to place all over my body. It would be a leg which would then get better, then my neck would start, or then my arm, hand, ankle, foot. You name the body part and it was involved at some point over many many years. As for the dry eyes, that problem started after being on Femara for about 3 years, and gradually increased to becoming a major problem, where I would just get over a bout, and it would recur again. I found that air conditioning or heated rooms were my worst enemy, and even though I have been off the drug for 1.5 years now, I still get a bout from time to time, often after being in an air conditioned room or car.


  • moderators
    moderators Posts: 7,679
    edited July 2019

    llthomp2,

    Welcome to Breastcancer.org. We're so sorry for the reasons that bring you here, but really glad you've found us. As you can already see, our Community is an amazing source of information, advice, and support -- we're all here for you!

    It may be helpful to you to read through our main Breastcancer.org site's section on Treatment Side Effects, for lots of good tips to help manage the side effects you're experiencing.

    We hope this helps and we look forward to hearing more from you soon. Wishing you relief soon!

    --The Mods

  • llthomp2
    llthomp2 Member Posts: 9
    edited July 2019

    Thank you so much for your reply. I'm am looking at the dry eye masks on Amazon right now! Do you know the brand you purchased? If not, is it filled with flaxseed or hydrophilic beads? I cant to try one of these!

  • july5117
    july5117 Member Posts: 2
    edited July 2019

    I had this dry eye problems too. I was on Tamoxifen first, then Letrozole, right now is Exemestane. The eye's problem was not just dryness, sometimes cause headache. I did research online, found this particular eye drop called Can-C. I brought a few, use it sometimes. my condition really got improved.

  • llthomp2
    llthomp2 Member Posts: 9
    edited July 2019

    I am suffering from the headaches also. I will definitely search for the Can C eye drops. Thanks so much for this info!

  • Tiredstage1
    Tiredstage1 Member Posts: 2
    edited August 2019

    I have been on Femara for 2 months after having an allergic reaction to Arimidex and thrombophelbitis with Tamoxifen. Fatigue and joint pain have begun. Does this improve with time? 5 years of this seems impossible. I know I am fortunate that I am Stage 1 and others have much more serious problems than I.

  • moderators
    moderators Posts: 7,679
    edited August 2019

    Hi Tiredstage1, and welcome to Breastcancer.org,

    We're sorry you find yourself here, but we're really glad you've found us. You're sure to find great support and advice here!

    While you may get some responses on this thread, there's also a very active Femara thread in the Hormonal Therapy forum where you may want to introduce yourself and share your experience to get great advice from others experiencing similar circumstances.

    We hope this helps and that you get some relief soon! Looking forward to seeing you around the boards.

    --The Mods

  • NikiLux2013
    NikiLux2013 Member Posts: 2
    edited June 2020

    I have been on Letrozole for two years, I have some side effects like dry eyes, higher cholesterol, vagina dryness but I am persevering. Lately I got checked by a cardiologist and my blood pressure shot up 155/80. Did you also have this problem?

  • moderators
    moderators Posts: 7,679
    edited June 2020

    Dear NikiLux2013,

    Welcome to the BCO community. We are sorry that you are dealing with these side effects. We are glad that you reached out for some support and the shared experiences of our members. This particular topic has not seen activity since August of 2019. Your post might reactivate it but if you do not get any timely responses you may want to start a new topic. You can also reach out to individual members via private message. Let us know if we can be of help as you settle in and navigate your way around. We hope to see you here.

    The Mods

  • llthomp2
    llthomp2 Member Posts: 9
    edited June 2020

    I have had all your symptoms, except the high blood pressure so far. I am starting on prescription medication for dry eyes. I hope it helps with my eyes and the headaches it causes. My joint pain was the worst. I finally got a referral to an orthopedist and received steroid shots in my knee and ankle. They helped so much, but after several months, the joint pain has transferred to my right shoulder. I have almost three years to go on Letrozole.


  • birdsndognow
    birdsndognow Member Posts: 16
    edited July 2020

    Hi. Today I was taken off of letrozole. In one month I'll start its cousin drug exemestane.

    Listed here is what was happening to me. --------------

    vertigo for months -- have fallen twice from it, and stumbled numerous times

    severe tinnitus

    fatigue

    shoulder, knee aches

    carpal tunnel like pain in both wrists

    cotton mouthed

    dry, itchy eyes

    chest tightness and breathlessness on paced dog walking, or when carrying and walking with heavier bags

    jitters, nervousness

    some emotional outbursts

    small red dots starting appearance under the skin, scattered on arms and legs

    excessive hair loss

    I started taking it in February. Took myself off until I could see my oncologist.

    She put me back on it, but unfortunately all problems came back along with added new ones.

    Don't go by me, however, I'm sensitive to alot of different things, so I'm not surprised it started so soon. My old nextdoor neighbor took letrozole for 5 years and didn't have one side effect from it, according to her.

    And an old coworker took tamoxifen for 5 yrs or more without side effects as I remember.

    I'm going to lite over at Treatment Side Effects topic to read. Hope to "see" you all there.

    Take care, all.

  • lillyishere
    lillyishere Member Posts: 769
    edited July 2020

    I am not sure what pains and body changes are from letrozole and what are recurrence. This is what is bothering me the most. I've been in letrozole since Dec. 2019, 8 months so far. Last 2 months I have:

    1. right side of neck swollen + new thyroid nodule. In the end of the month I will have a biopsy of the nodule.

    2. right breast implant swollen and infection symptoms. Taken care with strong antibiotics.

    3. right knew swollen with a lump in the back of knee. Next week scheduled to be checked by orthopedic doctor.

    4. unpredictable joint pains

    5. muscle loss.

    I am not sure if the swollen parts of the body are legit from letrozole. I never had these symptoms before and I have no idea if these are normal side effects.

    Any of you have any similar symptoms?

  • annie60
    annie60 Member Posts: 295
    edited September 2020

    I have been on Letrozole for a year. A few side effects but I was handling things. Now I have tinnitus so badly I am about to lose my mind. Could this be letrozole?

  • pnw
    pnw Member Posts: 36
    edited October 2020

    The dry eyes are just killing me, I take Letrizole and Ibrance, I don't know which one is doing it but I'm miserable. I wear sunglasses in the house and everywhere else my eyes hurt so much.

    Eye doc said it was extremely dry eyes but never mentioned anything about the condition being related to the cancer meds. Sometimes I think they just don't really care very much. She prescribed OTC eye drops and and ointment.

    Most of my hair has fallen out too. I also asked the oncologist about remedies for that and she just kind of stared at me like it was a stupid question and told me to puff it up.

    I know I'm supposed to be glad to be still alive and I am, but who am I anymore with all this stuff going wrong? I don't want to be this, whatever I have become.

  • lillyishere
    lillyishere Member Posts: 769
    edited October 2020

    I am told that letrozole doesn't allow the body to produce estrogen, and no estrogen means everything dries up, skin, hair, bones, ligaments, eyes, etc. All medications have side effects but cancer medications are very difficult for the body to handle.

  • minustwo
    minustwo Member Posts: 12,994
    edited October 2020

    PNW - I went to see my ophthalmologist when I had Dry Eye during chemo. She gave several samples of prescription eye drops. Much more effective than OTV

  • pnw
    pnw Member Posts: 36
    edited October 2020

    MinusTwo

    Did the eyedrops work? What was it?

    My burning eyes water frequently which makes my nose run, and the whole thing ruins every day. I really want it fixed.

  • llthomp2
    llthomp2 Member Posts: 9
    edited October 2020

    My dry eyes were killing me also. I used over the counter eye drops for a couple of years. They helped initially, but it got to the point that it was not enough. My opthmalogist prescribed Restasis eyedrops last summer and they have helped so much! The cost was prohibitive ($800 for two months supply and insurance would pay $0), so I get them from Northwest Pharmacy in Canada. My doctor sent the prescription to them at my request or you can send it online yourself. It is $179 for two months supply plus $20 shipping. It is usually less shipping, but more now because of COVID and shipping times are longer. Now that I have been on it for almost 3 months, I don't need as much, so the prescription lasts longer. Also, I got some relief from the eye mask/compress mentioned in one of the posts above before I got on the prescription. Hope this helps you.

  • minustwo
    minustwo Member Posts: 12,994
    edited October 2020

    Sorry PNW - that was 7 years ago & I don't remember - but she was great about giving me samples & they did work I do remember she said if nothing else worked we could look at putting in a temporary eye stent. Details vague but had to do with tear ducts. Hope you have an ophthalmologist so you can have a consult.

  • pnw
    pnw Member Posts: 36
    edited October 2020

    Seven years ago? Kudos!

  • mattiej
    mattiej Member Posts: 2
    edited October 2020

    Uggg...I also have tinnitus. It is so loud most of the time that I don't hear the TV. It just appeared one night over the summer. I have been on Letrozole for the last 18 months, Exemestane for 8 mos before that and Anastrozole before that. Total time on AI is 3 years. I have "traveling" pain, stiffness and achiness throughout my body. I also have dry eyes that recently has gotten much worse. My vision is blurring and eyes water and now have developed intermittent and diffuse headaches. My MO wants me to go on Tamoxifen, but I am resisting that because I still have a uterus and I'm afraid of the risk of uterine/endometrial cancer. I, like others here, wonder if the side effects are actually side effects or a recurrence of cancer. How can we tell the difference? I'm grateful to be here and be a bc survivor, but I still wonder about the drugs we're taking.. Good luck with your journey,,,,,,,,,,,,,,,,,,,,,,,,,,

  • lisaleigh
    lisaleigh Member Posts: 4
    edited February 2021

    Just want to let you know I did 3 yrs of Tamoxifen and 2 yrs of Letrozole and I have experienced the bone and joint pain, bad sleep, hot flashes, hair loss, fatigue, skin that was dry and breaking out at the same time, headaches and weight gain. I last posted at 6 months that I hadn't seen any changes after I stopped taking the last of the letrozole. Just want to let you know I am now out at 10 months and I am regaining hair and energy. My sleep still isn't great but better. Skin is starting to turn around. Hot flashes are almost gone completely. Weight is slowly and I mean at a snails pace but I am not trying very hard either. Finger nails are getting stronger and my bone pain is mostly gone. Only rarely do my bones hurt. Hip joints were the worst and they are getting to the point where excercise no longer sounds like torture. Please try to hang on through it all and know that this symptoms will go away. I kept looking for anyone to say these side effects went away and couldn't find one person. So I hope I can let you know, it will get better, it maybe rough right now but there is hope to get through it all.

  • Polly413
    Polly413 Member Posts: 31
    edited March 2021

    I took letrozole for one year, stopping in Jan of 2019. I had bone stiffness so bad that when I stood up from a chair I could not move for so long that Ilooked like I had Parkinson's. My hair that had regrown after chemo started falling out. I quit taking it but one factor for me is that my cancer while ER+ and PR+ is primarily basal and not luminal which studies suggest means that the letrozole is not effective at all for me. Don't know what I would have decided if that were not my rare situation. What I think happened is that the letrozole by eliminating estrogen threw me into female pattern baldness as though I am 90 years old rather than 73. It is thinner every day even though its been 2 years since I took letrozole and I am at the point of needing a wig. Its very distressing as this is permanent and I had always had very thick hair.

  • prairietwin2
    prairietwin2 Member Posts: 11

    I have been on Letrozole for five and a half years. The side effects were worse in the beginning . Joint pain,trigger fingers, vaginal dryness, sometimes tender breasts ( which was concerning ) Now after five full years most of those have almost gone away. Now I am experiencing more hair loss, very dry eyes, sometimes urinary infections. Most recently a bout of skull psoriasis. I learned that this is being studied as a side effect of taking Letrozole - in women who have taken L for more than 3 or 4 years and are over 60. After the patients stopped L it cleared up.I should be finished in Sept so hoping the skull issue will improve along with the loss of hair. So solution for the dry eyes as my Optomatrist doesn’t think L is the problem. I think it has been worth taking Letrozole.

  • dbrinkman
    dbrinkman Member Posts: 1

    I have been on Anastrozole, Letrozole, and now Exemestane since the fall of 2021 after having a lumpectomy from being diagnosed with DCIS with invasive cells fueled by estrogen. All of these medications have been a nightmare for side effects. Anastrozole I had a dull headache, insomnia, hot flashes, and joint pain. Switched to Letrozole about 6 months after that. Eventually, I had migraines and the pain went into my jaw on my right side. It felt like I was hit in the head with a baseball bat. Got an MRI of my head because I thought I had a brain tumor. Saw a neurologist who gave me ubrelvy to take the edge off. After the jaw pain, it takes days to be able to open my mouth to eat again from the pain. Had insomnia, hot flashes, and joint pain. Just started Exemestane which has mostly the same symptoms with some added ones. Headaches, same jaw pain, insomnia, hot flashes, chills, and body aches like you have the flu. The worst back pain and hives. Now from all of these pills, I have Osteoporosis and have to take Alendronate sodium probably for the rest of my life I was told. They tell me I have 3 years more to go with these to reevaluate. How do you choose your quality of life against the possibility of getting cancer back? I am 57 years old. I know I dont have it as bad as some people. I wish there was another way.