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I waa refitted for sclera lenses on yesterdayand not only are my eyes sore but my entire body feels like one huge sore about to ooze...😭😭😭😭

July 28
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MyLupusTeam

That sounds absolutely miserable, and it makes complete sense to feel overwhelmed right now. πŸ’™

When hydroxychloroquine (Plaquenil) is stopped, lupus symptoms can flare up because the medication was actively working to slow down the autoimmune activity causing inflammation throughout your body. Without it, that protection is Show Full Answer

That sounds absolutely miserable, and it makes complete sense to feel overwhelmed right now. πŸ’™

When hydroxychloroquine (Plaquenil) is stopped, lupus symptoms can flare up because the medication was actively working to slow down the autoimmune activity causing inflammation throughout your body. Without it, that protection is gone, and your immune system can go into overdrive.

This can cause widespread aching and sensitivity β€” basically your whole body feeling like one giant bruise. Even a localized discomfort, like sore eyes from your new sclera lenses, can feel amplified across your entire body during a flare. It's also worth knowing that hydroxychloroquine stays in your system for roughly three months after stopping, so your body is still adjusting to its absence.

The most important thing right now is to contact your rheumatologist as soon as possible and describe exactly what you're experiencing. This level of discomfort after stopping Plaquenil is something they need to know about urgently β€” you shouldn't have to just push through this alone.

July 28
A MyLupusTeam Member

Something to keep in mind is that anything that stresses your body (like a medical procedure, small injury, sunburn, etc can cause a systemic flare up and make you feel miserable. Also anything that causes mental stress (like dealing with medical appointments, going to the dentist) can also cause a systemic flare up and make you feel miserable. As much as possible I really try to group as many appointments as I can into a single week because I know I’m going to feel miserable so I like to get it all done at once! The only real remedy is rest, a dark cool room, and maybe an Epsom salt bath. I hope you feel better soon. A side note whenever I attend at a drs office I keep my face covered and when they leave you sitting in an exam room for however many minutes before the dr arrives turn the lights off. The more you can limit your exposure to light the less miserable you will feel. Take care.

July 29
A MyLupusTeam Member

May I ask why you were taken off of Plaquenile, was it due to your vision? What do they have you on now?

July 29
A MyLupusTeam Member

I never thought of an Epsom salt bath! I am going to try this. πŸ‘

July 29

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