Eye Pain from Tamoxifen?

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Spoonie77
Spoonie77 Member Posts: 925
edited October 2020 in Hormonal Therapy - Before, During, and After

Hi all - question, has anyone had eye pain occur from Tamoxifen?

I had been on 5 mg daily for the past two months. Had an awful time...quality of life zilch. Recently stopped at the end of May. Three days ago my right eye started hurting. Not swollen. Not red. Not itchy. Just constantly aches, dully on the inner corner, not the bone or muscles or eye lid, but the actual eyeball itself. I have had no injury or stress to the eye. I've never had a pain like this in my life that I recall. Feels like increased pressure on my eyeball ....IDK. Just strange timing.

I'm going to mention it to my MO via the portal to see if it something I should be seen for, as Tamoxifen can cause all kinds of weird SEs. I've already had 2 rare ones and don't really care to have more (hypersenstivity and vasulitis). I

n the meantime, anyone have something similar happen?


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  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2019

    Wow, never had that on tamoxifen. I'm not sure I would reach out to the MO with that one. They can't do a proper eye exam--do you have an eye doctor you can get in with?

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited June 2019

    I concur with gb2115 - please get to an eye doctor. Are you at risk for glaucoma?

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited June 2019

    Yes, Tamoxifen is hard on the eyes. I ended up with eye issues while taking it - very dry, blurred vision, aching. I was also taking hydroxychloroquine, though, which is also tough on the eyes.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    I just moved here in the past year and haven't found an eye doctor yet. Cancer care kinda took over as I know you all can understand.

    I'll call my PCP and see about getting into someone asap. It's obviously not getting any better this morning. As far as I know, being only 42 I'm not at risk for Glaucoma. I had Optic Neuritis before in 2003 but I know this feels diffferent. At that time, I actually lost my vision in my right eye for half a day. It was scary. Just part of the "normal" life of a Spoonie. Ugggh.

    I will still reach out to my MO to let them know about the issue so they can continue to see that I'm a zebra and get all the "fun" stuff. LOL but not really LOL.

    Thanks everyone. I'll keep y'all posted.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited June 2019

    Eisner A, Luoh SW. Breast cancer medications and vision: effects of treatments for early-stage disease. Curr Eye Res. 2011;36(10):867–885. doi:10.3109/02713683.2011.594202

    “...a prolonged period of sustained estrogen deprivation has the potential to increase the risk or severity of several age-related eye diseases or conditions, including glaucoma33–37 and macular degeneration.38–4” and “Tamoxifen can induce cataracts”

    Don’t panic but do report this.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Thank you for that info, ShetlandPony. It's much appreciated.

    My MO messaged me today to say that I should definitely be seen asap, by that time I was already in Urgent Care. I had an appt scheduled when I posted earlier, but it would've required me to drive an hr to be seen, and thankfully I found a UC that could see me for the eye issue so I didn't have to drive.

    I saw the dr in the UC, he went to consult another dr, and then I waited in the room for him to come back. I was a bit panicked when a nurse came in 15 mins later and told me that Ophthalmology would be seeing me downstairs right away. They had made me an appt.

    Anyway, saw a nice dr, he was thorough. Things are a bit inconclusive right now. I do know that I don't have any infection, damage, injury, or increased pressue so those are huge pluses. Right now, he doesn't have an explanation for what I'm experiencing but he does say that my vision is definitely decreased on the right side and there is irritation more so than in the left. He said I'm to call him back on Thursday to update him on my condition. He gave me rx eye drops and directions to not wear my contacts for the next 2 days to see if that might help. He also told me he would do some research on Tamoxifen effects on the eye before I called him on Thursday. Think I have found my new eye doctor! LOL. :)

    At this point, I'm just glad there isn't anything super serious that he sees going on. The pain and pressure is still there but I am hoping it will go away on its own this week.

    Anyway, thanks everyone for the support and encouragement. It's been a long day but at least I have peace of mind at the moment. That's sometimes a very priceless thing!

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  • marijen
    marijen Member Posts: 3,731
    edited June 2019

    I have ERM in both eyes since taking letrozole. Epiretinal membrane aka macular wrinkle. Great that this doctor is open to reviewing the research. Mine was too, He said letrozole can cause eye edema. I use Muro drops for that. It’s basically a salt solution to suck out the edema or reduce corneal swelling. My eyes are too important, I quit the letrozole. Since then they’ve improved.


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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited June 2019

    There are quite a few studies about Tamoxifen's effect on the eyes. Many that I found were rather old (90's), but there is definitely a link. Here are a few;

    https://www.ncbi.nlm.nih.gov/pubmed/9398992

    https://www.ncbi.nlm.nih.gov/pubmed/26759403

    https://www.ncbi.nlm.nih.gov/pubmed/9373465 Interesting conclusion on this one, which may be why so many doctors don't even know there's a link: "Although retinopathy can occur in a tamoxifen-treated population, its low incidence and an associated good prognosis for vision does not merit special screening for this problem." (My eye doc described my eye issues from Tamoxifen as retinopathy.)

    https://www.ncbi.nlm.nih.gov/pubmed/21119261 Conclusion here: "Although ocular toxicity is rare, careful evaluation of patients with visual symptoms on tamoxifen therapy is required."

    https://www.ncbi.nlm.nih.gov/pubmed/21819259 From 2011: "The selective-estrogen-receptor-modulator (SERM) tamoxifen, long the gold-standard adjuvant-endocrine-therapy for women with hormone-receptor-positive BC, increases the risk of posterior subcapsular cataract. Tamoxifen also affects the optic nerve head more often than previously thought, apparently by causing subclinical swelling within the first 2 years of use for women older than ~50 years. Tamoxifen retinopathy is rare, but it can cause foveal cystoid spaces that are revealed with spectral-domain optical coherence tomography (OCT) and that may increase the risk for macular holes. Tamoxifenoften alters the perceived color of flashed lights detected via short-wavelength-sensitive (SWS) cone response isolated psychophysically; these altered perceptions may reflect a neural-response sluggishness that becomes evident at ~2 years of use."

    https://www.ncbi.nlm.nih.gov/pubmed/17601434 "High-dose tamoxifen therapy may result in peripheral crystalline retinopathy in addition to perifoveal opacities. Angiographic evidence of macular edema may not unanimously correlate with presence of CME on OCT in these cases."

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  • SajeScents
    SajeScents Member Posts: 50
    edited October 2020

    Thank you for posting this. I have recently been diagnosed with epiretinal membrane, specifically macular pucker, in one eye that progressed quickly from March to my follow-up appointment in September. Neither my oncologist nor optometrist know about the link between aromatase inhibitors and this eye condition. I only learned about it while searching PubMed articles. Needless to say, I decided on my own to stop taking my anastrozole a few days after my diagnosis (after Ocular Coherence Tomography ("OCT" Imaging). I had only been taking anastrozole for three years.I hope I made the right choice.

    I still have to hold down my job as document specialist (computer work), and any serious decrease in visual acuity would put me in in dire straits! Why don't our oncologists know more about this risk, especially for older women? I am 67 years old. I will ask my doctor to prescribe those Munro drops if available in Canada. Thanks, again.

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