Plaquenil Retinopathy and changing my meds.

Hi everyone this is my first post here. My name is Rei, I am 24 years old. I have SLE and was diagnosed when I was 20. From the beginning I have been on plaquenil 400mg daily, though my anti-inflammatories have changed a few times. This January I had my annual eye exam and they did retinal photography to make sure I didnt have toxicity. For those of you that don't know, plaquenil can cause a certain kind of retinopathy/maculopathy in the eyes if your dose is too high because the drug builds up in your system. It can cause blindness.

So when I had the photography done the optometrist had a concerned look on her face and proceeded to take 17 more photos of my retinas. Needless to say I was freaked out. I already have issues with my eyes and vision. The optometrist ended up referring me to an ophthalmologist but my appointment was a month away. Because of the questionable areas on my retinas I was told I should stop my plaquenil immediately. I called my rheumatologist and he agreed. Then I started questioning why this could be happening to me. Over the summer I was dealing with major emotional stress when I finally decided to ask my husband to leave. The stress of him being around had caused me to lose 30 pounds in 2 months. I went from 160 to 130 pounds. Was that why my levels were toxic.

I stopped the plaquenil and proceeded to have the worst flare I have had since my diagnosis 4 years ago. I was major stressing about my eyes and going blind and my stupid divorce and what are my options now if I want to have kids. I did it to myself but I clearly was in need of some help. I saw my rheumatologist and he started me on imuran 50mg and a prednisone taper. Its been 5 weeks of the imuran and I feel no different just a little better from the prednisone. But if I dont take the prednisone I feel like garbage.

So I finally had my appointment with the ophthalmologist and I Do Not have plaquenil retinopathy. The optometrist I had initially seen had old antiquated equipment. From now on I will be seeing the ophthalmologist yearly for my retinal check ups. So basically this optometrist sent me into a tailspin for no reason. Now that I'm over my anger at her I just want to go back on my plaquenil. My appointment with my rheumatologist is in a week but I think I just want to stop the imuran and go back on my plaquenil now. Imuran scares me. Having my labs drawn every two weeks also scares me. I just want to live a normal ish life with my lupus and not keep dealing with the monkey wrenches life keeps throwing at me. I want to find the right guy and have kids. I want to continue working as a nurse because I love what I do but my lupus gets in the way. A physically and emotionally demanding stressful job is not really ideal for someone with lupus. I am sick of my lupus telling me what I can and cannot do. I want to go in the sun and I want to have a drink with my friends now and then but I cant or I shouldn't or I'll pay for it if I do. Not really sure there's a question I'm just venting I guess. Thanks for reading.

Hang in there Rei!

There is hope for a normalsih life -

I've been sick since I was 14 but not diagnosed with Lupus until a couple of years ago - It takes the help of my amazing husband but we have raised ten children together, I own a business that I love & am the sole financial support for the crew, and I remind myself that flares will end

I've also shared Lupus with too many of my daughters - My oldest has three adorable children (we share coping skills for daily life), my baby (14 years) was recently diagnosed, her sole focus is learning to live as a normal teenager

Thank you all! Sometimes I just need some encouragement and a little perspective. I'm flaring bad today. My knee is killing me and I'm in the middle of a 12 hour shift. Just have to make it till 7:30 then I'm off for 3 days. I'm going to go wrap my knee. :)