Blurry eyes after starting Tamoxifen?
Hello,
I started Tamoxifen 2 weeks ago and a couple days ago I started having blurry vision. The first day it happened, it lasted about 4 hours.
I called my Oncologist and he said to stop taking the Tamoxifen for now and has me scheduled to see an Ophthalmologist.
Anyone else experienced this?
Thanks!
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I didn’t realize there was such a thing as “tamoxifen retinopathy”. It seems to be dose dependent, and accumulative.
Here’s a quick synopsis:
https://www.sciencedirect.com/science/article/abs/pii/S0039625723000383
BTW I’ve found Science Direct a very useful site. I had some of the latest research on radiation when I walked into my radiology oncologist appointment for the first time. She noticed my notes on the Italian study on 5 day radiation treatment - and told me that was an option for me. We were able to have a good discussion because I had read so much about the research.
@triciaot
Thank you so much for that link. It is very helpful to know Tamoxifen Retinopathy has occurred as early as 3 weeks and while patients were taking a 20mg/day dose.
I take tomoxafen and had dry eyes pprevious to this. Now I have infections in both eyes. I didn't eve think of the medication. I think unrelated
You may have just answered my question. I had started Tamoxifen at a low dose, slowly raising it. I am up to 15mg now and suddenly my vision has gotten very blurry. I was wondering what was going on. I have an appointment with the eye doctor next week. I had wondered about dry eye too. I'd been using the artificial tears at night. Maybe I'll try three times a day. Thank you for your post.
@wellgirl
The eye doc said the Tamoxifen was making my eyes super dry and told me to use the drops at least 3 times per day and it definitely helped.
Using “Readers” also helped when I was on the computer.
I started using "artificial tears" last night and again this morning. It made a huge difference. I didn't even realize that my eyes felt dry. They feel much better now.
I'll report this to my eye doc when I see him on Tuesday. Many thanks! It's so great to have this site so that those of us going through the same things can compare notes. Thanks!
I Eason Anastrozole fir 2 years and have been in Exemestane fir over a year and i can say my eyesight has disimproved. I get blurry eyes when I wake up but it clears up in a few mins.
I had awful problems on Tamoxifen.
Pounding pain in eyes & head, vision disputed, not right ( not like a classic migraine much worse) & yellowing of the whites of eyes.
I was on it for a only a few days as the pain & vision got worse so it was very abruptly stopped.
I was on Tamoxifen for 5 months after 7 months on Anastrozole, My symptoms on Tamoxifen were a general feeling of dryness and EXTREME fatigue. I could only be up for about 3 hours a day. I also had multiple UTIs.
Since, as a woman aged 79, I have had UTIs in the past, I tried taking Amoxicillin, which may have been old, since I had bought it in Cancun and had it for a while. It did nothing, I had also tried an over-the-counter pill that did nothing but turn my urine orange. I then went in to be seen and was prescribed Nitrofuantoin, which did stop the UTI. I was on it from January 3-11 and taking 2 strong antibiotics gave me a fungal infection and I had to go in a second time and take a pill for that.
In May (May 1, 2024) my routine trip to my oncologist here in Austin before leaving for the summer in Illinois showed that my LFTs were elevated. This was odd because they had been fine in March of 2024, but now, on May 1, they were in the seventies, when the top limit is supposed to be 25 and 35 or something low like that, for ALT and AST. Over the next month or so my liver enzymes began doubling every 2 weeks, I had blood draws on 5/1; 5/23; 6/11; 7;1; 7;26; 8/13 and 8/29. The high point in this was a reading of 228 and 242, which is very high, I am now being seen at the Texas Liver Institute and we have managed to get the LFTs down to the forties, but they are still considered high. They have also put me on 900 mg. of ursodiol, in a pill taken 3 times a day (300 mg, each) I had to fly all the way to Texas to get a liver specialist who could diagnose and treat me before November 22nd, which was the first time the University of Iowa Hospitals and Clinics would put me on their schedule---and that was in case somebody canceled. They had me phoning Peoria, Des Moines, and other Midwestern locations. If your liver is not treated in stage one, things go downhill quickly. A friend who doctors here in Austin got me in to be seen and may have saved my life. As for the blurry vision, I had that on Anastrozole immediately, along with teariness, mood swings, brain fog, insomnia, excruciating back pain, vivid violent nightmares and it blew out my left knee, putting me in a wheelchair and in need of 32 ml of an anti-inflammatory and 6 ml of Durolane. I quit taking Anastrozole after that 9/15/2022 blow-out, but I was X-rayed on 9/19, 9/21, 9/28 and 11/15. My bone density also declined on Anastrozole from -1.4T to -2.2T. I was off my everything for 9 months and then spent 5 months on Tamoxifen, which was more tolerable but gave me debilitating fatigue and a general feeling that everything below the waist had died. I quit all adjuvant therapy drugs on 8/30/2023, so I have been "off" them for a year. I worry about a recurrence, since my onco score was 29 and I never had chemo because my oncologist in Illinois refused to order one and it took until 2023 to get it here in Texas. I did have 33 radiation sessions that ended in July of 2022. I feel "normal" again, and, fortunately, after I spent 6 months hobbling with a cane or in a wheelchair, my meniscus tear symptoms subsided by March of 2023. I cannot take a pill that cripples me simply on the "off" chance that it might (no guarantees) protect me from a recurrence. It was hell on Earth. I hope that some sort of way to "monitor" any recurrence via a blood test or other means, because the peace of mind I have lost about being "healed" is great. Every single thing I was given to "protect" me made me as sick or sicker than I felt when diagnosed with cancer at age 76 on Dec. 7, 2021. There is a theory that nitrofurantoin is known to "trigger" autoimmune hepatitis among some patients, and that is one thing that the liver institute people are working on now.
I know this is a bit off-topic, but does anyone have an info on TamA, a milder form of Tamoxifen? I’m 2 yrs, 8 months out from my DCIS, Hormone POS, HER2Neg diagnosis via routine mammo. Dec 21, 2021 - Lumpectomy lower left quadrant of right breast, 3 lymph nodes removed (all clean). Radiation in Feb 2022 of right breast (5 days/wk through Feb 28). In March, Medical Oncologist prescribed first Anastrosole (took for 5 months, but it attacked my joints, especially my hands, so that was stopped. Took 30 days off, then began Letrozole, but it attacked my emotions, moods - all I did was cry, so that was over by Aug. The next step was Tamoxifen, so he told me to take the rest of the year off & we’d revisit in Jan of 2023. In Jan I told him I didn’t want to take Tamoxifen, so we had a thorough review of my condition and it was determined that for me, these drugs were optional. I left there with the most calm and upbeat attitude I’d had since this journey began.
In May of 2023, I had to move, so I was now 3 hrs from all my doctors. I continued to have necessary bloodwork - all good & see my breast surgeon, radiologist & oncologist since appts were at 6 mos now rather than 3. In Dec I had my 2 yr mammogram at my breast surgeon’s office. It was clean & my dr told me he was retiring & that now appts would be every year. I made the decision to stop traveling & get all new doctors. I took recommendations from my current cancer doctors & saw them each for follow ups. So far, so good, except for oncology. My new oncologists suggested I try TamA when I saw her in April. I was floored because I thought I was finished with oncology meds. She told me to take 6 months to think about it, but ultimately it was my decision to make. So now I’m coming up on this decision next month but I no little to nothing about TamA.
Has anyone tried this drug? If so, how has it been for you?