medications and eyesight.

@tisme, I think that could be a difficult question for anyone to answer but it is definitely something I would discuss with my doctor or a rheumatologist. Here's some information that might shed some light on your question and would be good to discuss with your doctor.

"Getting the wrong dose of this arthritis drug is common, and it can lead to irreversible eye problems."
-- Hydroxychloroquine May Put Eyes at Risk: https://www.arthritis.org/drug-guide/medication-topics/hydroxychloroquine-may-put-eyes-at-risk

Have you had a chance to discuss it with your doctor?

Eye damage from hydroxychloroquine is usually from long term use. The cumulative dose over time is the
most important determinant in causing visual problems.
There are objective tests such as visual field testing
and color detection that your ophthalmologist can use to observe for problems with any toxicity.
Therapy decisions are also based on the diagnosis
you have requiring treatment.

You might consider getting checked by an ocular immunologist; this is a highly specialized ophthalmologist available at major medical centers; this doctor would be able to provide specialized vision testing and also consult with your rheumatologist regarding your medication and autoimmune disease management and if it is affecting your vision. Best wishes!

If you take or have ever taken hydroxy, you need to see a retinal specialist for a complete retina exam. That is how you tell. I had a baseline before I started and a check a year later. While most people get checked every few years, I will get a check every year. That said, on proper doses hydroxy is extremely safe and only rarely causes retina issues (retina specialist told me this as well as my rheumy). Yes, it can cause retina issues, so you must get checked.

Depending on your age and the kinds of changes you've had in your vision, it could be cataracts. Whoever did your eye exam should have been able to tell you if you have developing cataracts. They can take years before they are ripe enough to need surgery, but they will start causing vision issues before then. How old are you? Do you have a history of taking steroids?

Hi, my opthalmogist tested my eyes using color recognition, periferal vision testing with the machine, retinal scanning and a couple of others that i do not remember. I had been taking 800 mg of plaquinel for 3 years then went to 400. All this testing was done 2 times a year. The tests were all covered under medical insurance with the exception of the refraction tests for glasses.

@tisme It is my own personal opinion, that many different medications, used over a long time, can help lead to optical issues. For me, I use a steroid called dexamethasone as part of my treatment regimen for the blood cancer multiple myeloma. Long term use can exacerbate or cause cataracts. Fortunately we were able to lower my dose, not eliminate it. My age-related cataracts, complicated with the medication side effects, were remedied by cataract surgery over two years ago.

As others have said, it is good to get base-line testing done, and be aware of changes in your vision! Sight is a most-precious gift.
Ginger

@johnbishop thanks for that, interesting my rheumatologist has me on 400mg a day. might give a copy to my optometrist as well.

@jeannef2025 I just turned 65 , dont have a history of steroids but i have been on the dose of 400mg for about 6 months, my eye doc says im having issues because my glasses havent been changed for a couple of years ( a new doc ) the previous doc said my eyesight hasnt changed in the last year enough to justify new glasses.

@gingerw I know, losing my eyesight is the thing I fear the most, I worked in aged care for those who were blind and since then its been a worry.

This is such a timely post. I have been on HCQ about eight years at a dose shy of 300 mg/day. My ophthalmologist has seen me twice a year to check for retinal toxicity. Considering my conservative dose, I thought that a bit much. Surprise! At my recent eye appointment he found suspicious changes in my retina consistent with plaquenil toxicity! It had been my impression that this was a very rare side effect of plaquenil use, but not according to my doctor. When I asked how many of his patients had developed this, his reply? “A bunch!”

I am now off HCQ, and would caution anyone on this medication to make that visit to the opthalmologist not once, but TWICE a year. You are more apt to prevent major retinal damage if caught early enough. And there is some hope for partial reversal.