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I have Sjogren's Disease and Lupus and I started HCQ last April 12th 2025 and after approximately 2 and 1/2 months I noticed a lessening of pain from Sjogren's Disease. However, as time went by I noticed that I was becoming very anxious. On September 14th 2025 the anxiety was so severe that I stopped taking HCQ. This medication has a long half life when it is in your body so it can take up to 50 to 60 days for it to completely leave your body. Somewhere between 50 to 60 days the anxiety started to fade. This was probably the worse experience in my life as I couldn't be alone because of sheer terror. I felt as though I had an psychotic episode and would never be the same person as I previously was. I saw an extremely experienced acupuncturist who helped, I practiced acupressure, I sat on my elliptical for one hour a day, I took one drop of a mild marijuana tincture and slowly I returned. That was a nightmare. I have a corneal specialist that I see at Mass. Eye and Ear Boston and she told me that only one of her patients actually became totally blind after taking it for an exceedingly short time ?3 to 4 months perhaps. Hope this information helps you.

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Replies to "I have Sjogren's Disease and Lupus and I started HCQ last April 12th 2025 and after..."

@dianedonohue Sorry if that info was depressing but it is important to know of all possibilities when taking these very powerful medicines. HCQ gets absorbed by all tissues in the body that is why it can cause blindness. Good luch on your journey.

@dianedonohue thank you for sharing your experience. That had to be very scary. It sounds like you handled it well, but that had to be a miserable side effect. I am on the fence about starting the Hydroxy. My optometrist didn’t sound too excited about it. I have histoplasmosis in my eyes. She said once the damage is done it is irreversible. I don’t want to damage my retina. I’m always that small percentage of people that ends up with the problem. I am miserable daily but not worth losing my vision. Just my opinion. Most of us here are probably in touch with how our bodies respond. I’m going with my gut and waiting.