Tamoxifen and retinal damage

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Hello

Since starting Tamoxifen in 2013.. I have developed Macula r Degeneration. .My Optometrist says it's the Tamoxifen. it's getting worse. I'm thinking of stopping it.

Anyone hear of this?


Lisa

Comments

  • wallycat
    wallycat Member Posts: 3,227
    edited December 2016

    I'm so sorry you are dealing with this. There are some newer treatments being developed for retinal care.

    I found this article that may address your question:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32058...


  • badger
    badger Member Posts: 34,614
    edited December 2016

    hi Lisa, I'm sorry you're dealing with macular degeneration. I haven't experienced that myself but have other eye issues that could be attributed to tamox. I took it for five years and am now two years into anastrozole, the generic of Arimidex.

    Three years into tamox, I experienced a retinal tear. Got it patched up in time to avoid a detachment but it was close. Now I am brewing cataracts. That's a known S/E of tamox but could be heredity as mom had them too but she was on tamox for five years herself.

    Best wishes and ((hugs))

  • pearlcap
    pearlcap Member Posts: 11
    edited May 2018

    I recently finished my 5 years of Tamoxifen and thought I post something about my vision problems since I've seen a lot of incorrect information on this blog. I was on low dosage of Tamoxifen (20 mg) for five years and sometimes after two years of taking Tamoxifen, I experienced a blurry yellowish, central vision in addition to night vision problems. The ophthalmologist I went to couldn't find anything wrong and the oncologist was insistent that it could not be caused by Tamoxifen. I have a medical background and didn't do much about this, partly because I was experiencing a number of other medical problems at the time and didn't have time to focus on my vision. Two years later, I went to an ophthalmologist specializing in retina and after numerous tests (ERG, EOG, etc.), found out that it was caused by Tamoxifen. The medical literatures have indicated that it's rare and occurs in women who are taking Tamoxifen in high dosages (above 100 mg); however, this particular retinal specialist (this is who you would need to see if you are experiencing vision problems) told me that he sees many patients on Tamoxifen and quite a number of them have vision problems. Although this is supposed to be reversible; so far, I have been off Tamoxifen for 3 months and have not seen my vision problems reversed. One clue in the beginning that I would have much worse side effects than other people was the result of the drug metabolism test I took (it's called a CYP2D6 test). The result of the test indicated I was a ultra-metabolizer (a statistical rarity) of Tamoxifen and this probably would have explained why my other side effects were so bad. If my symptoms reverse, I will put up another post.

    Overall, it's probably rare, but doctors should not said it does not occur. If you have a problem, see an ophthalmologist specializing in retina. It's a problem that is underreported.


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