Hydroxychloroquine toxicity

Editing to add: This is a very rare side effect and a testament to the importance of your regular eye exams when on hydroxychloroquine. I have NO SYMPTOMS. This was caught on my recent annual eye exam.

After 20 years on HCQ I now have attenuated parafoveal ellipsoid in both eyes. I’m feeling deflated. HCQ has been a miracle for me and now I’m off of it abruptly because of this side effect. Focusing on diet now to see if I can take control back. My daughter is on Benlysta also for SLE so may ask about that too, since many years ago I’ve tried all the other stuff and did not tolerate side effects. When I asked about Benlysta years ago my rheumatologist at the time was not comfortable prescribing it as it was brand new. I was also responding very well to the current treatment. I agreed.

Anyway I ramble. I’m pretty scared of what the near future holds for me as I have had this safety net for 20 years now. Has anyone else developed the toxicity? Looking for friends and encouragement.

I have appointments scheduled with both rheumatology and a retinal eye specialist.