Plaquenil Retinopathy and changing my meds.

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New Member

Date Joined Mar 2014
Total Posts : 3
   Posted 3/8/2014 8:31 AM (GMT -6)   
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.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/8/2014 1:19 PM (GMT -6)   
That was a terrible scare.
You've made it through and things will get better. There's an ideal guy out there for you somewhere. Just be patient.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Jan 2013
Total Posts : 62
   Posted 3/9/2014 3:00 PM (GMT -6)   
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
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA - Reynaud's - Fibro - AIED - TMJ - Sjogren's

Regular Member

Date Joined Feb 2011
Total Posts : 399
   Posted 3/9/2014 3:01 PM (GMT -6)   
One of the truths that I have learned in my journey with Lupus is to take life one day at a time. There were times in the past when I just wanted to give up. I was frustrated with my limitations and having to make such intense changes to what used to be a very active life. I still experience those moments, but my attitude has changed, especially in the past five years. I have really learned to be gentle with myself and to find supportive people who understand what I go through. This is one of those places. It's okay to vent and it's okay to reach out. The care and compassion here is a breath of fresh air!


New Member

Date Joined Mar 2014
Total Posts : 3
   Posted 3/11/2014 12:45 PM (GMT -6)   
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. :)
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