I Got Retinopathy from HCQ. Here is My Story...

Author "M" in Seoul, Korea

I was diagnosed with lupus in June 1992.  It took me six years to get diagnosed.  I was on glucocorticoids (Prednisone/Prednisolone), until in October of 1997, then I started taking hydroxychloroquine (HCQ).  In July 2005, my ophthalmologist found hydroxychloroquine retinopathy on one eye, and I discontinued Hydroxychloroquine.  There are good articles on hydroxychloroquine and retinopathy written by doctors such as [6].  However, as an Asian lupus patient of many years, I just wanted to share my experience with you and let you know that it is okay.  

After I discontinued hydroxychloroquine in July, I was followed up by a retina specialist in September 2005.  I had to wait for the hydroxychloroquine to clear up in my system for three months before being seen.  When I was examined three months later, I developed hydroxychloroquine retinopathy (Bull’s eye maculopathy) on both eyes.  After another follow-up visit, my retina specialist concluded that my retinopathy stabilized, and had me followed up by my comprehensive

ophthalmologist from then on.   In April 2007, my comprehensive ophthalmologist found some progress in my retinopathy.  I was sent back to my retina specialist, until it was confirmed that the retinopathy stabilized.  Since then, there has been no progression and I’ve been doing fine.  Do I have any symptoms?  No, I do not notice anything, except my night vision has diminished a little bit that when I drive in the dark, I find it difficult to determine the curvature of the road.  Other than that, I don’t have any other issues.  

There are numerous benefits of hydroxychloroquine for lupus patients [1-5, 7-9].  Research shows using hydroxychloroquine in lupus patients decreases lupus activity, number of lupus flares, chances for organ involvement or damage, and increases the chances of long-term survival and chances for lupus remission, and lastly hydroxychloroquine has the ability to delay absorption of UV light [1-5, 7-9].  Patients taking hydroxychloroquine are less likely to develop cardiovascular problems such as heart attacks, blood clots and strokes [1, 3, 7, 8]. Patients who are not taking hydroxychloroquine are related to high disease burden, and failure to achieve low disease activity (LLDAS) tend to result in cardiovascular problems [1, 3, 7, 8].  Dr. Thomas has written a wonderful article on how hydroxychloroquine works for lupus and a comprehensive article on top tips on taking hydroxychloroquine for lupus [5, 7]. Also, there are more resources in his Lupus Encyclopedia [8]. 

I noticed, I became more UV light sensitive after stopping hydroxychloroquine, and I now am on two immunosuppressants and their side effects are dreadful.  Knowing the wonderful benefits of hydroxychloroquine, I really wish I could go back to take it.  

So, dear fellow lupus patients, do not fear taking hydroxychloroquine.  It has numerous benefits, and getting annual eye exams [6], if you develop retinopathy, it will be detected at a very early stage that it is likely you will hardly notice it if not, none.  It has been 18 years going on 19 years since I developed retinopathy, and I am doing well and there is no further progression.  

Bibliography

[1] Drosos, George C et al. “EULAR recommendations for cardiovascular risk management in rheumatic and musculoskeletal diseases, including systemic lupus erythematosus and antiphospholipid syndrome.” Annals of the rheumatic diseases vol. 81,6 (2022): 768-779. doi:10.1136/annrheumdis-2021-221733

[2] Fanouriakis, Antonis et al. “EULAR recommendations for the management of systemic lupus erythematosus: 2023 update.” Annals of the rheumatic diseases, ard-2023-224762. 12 Oct. 2023, doi:10.1136/ard-2023-224762

[3] Kostopoulou, Myrto et al. “Cardiovascular Disease in Systemic Lupus Erythematosus: Recent Data on Epidemiology, Risk Factors and Prevention.” Current vascular pharmacology vol. 18,6 (2020): 549-565. doi:10.2174/1570161118666191227101636

[5] Thomas, Donald E., How does Hydroxychloroquine work for Lupus (SLE)? [DEC 2022 Update]

https://www.lupusencyclopedia.com/how-do-antimalarial-drugs-work-for-lupus/

[6] Thomas, Donald E., Rheumatologists: What if hydroxychloroquine eye tests show retinopathy [FEB 2023 Update]

https://www.lupusencyclopedia.com/important-advice-for-rheumatologists/

[7] Thomas, Donald E., Top Tips on Taking Hydroxychloroquine for Lupus [Ultimate Guide AUG 2023]

https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/

[8] Thomas, Donald E. The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers Second edition., Johns Hopkins University Press, 2023.

[9] Lupus Foundation of America, Hydroxychloroquine (Plaquenil): Benefits, Side Effects, and Dosing https://www.lupus.org/resources/drug-spotlight-on-hydroxychloroquine

Author: M

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March 2024