possible lupus?

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Regular Member

Date Joined Aug 2014
Total Posts : 36
   Posted 7/14/2015 1:29 PM (GMT -6)   
Hi all, I've been seeing rheum for about eight years and had tons of tests run. Currently I'm having bad joint pain in my hands mostly, itching, some rashes especially in sun or after showering, dry scratchy eyes and dry mouth, random abdominal pain and intermittent fevers hovering around 99. I've always had reynauds and have had headaches and frequent persistent migraines since 12. They often require steroids to calm down.

I'm 24 now and originally saw pediatric rheum who thought I had RA and then decided not. I didn't have all the classic signs or test results. First adult rheum didn't know but joint pains got better so just treated with lyrica for muscle pain/fibro. I started plaquenil a year ago when my hands flared up again and it's just been downhill from there

Current rheum has no idea what to make of this so I'm seeing another specialist who doesn't have appointments till December.

And the kicker: all my tests are negative. RF, ANA, complement, sed rate, crp, ccp, Lyme ETC. Xray showed no erosions. The only one borderline was rnp 1 number below positive.

Does this sound like lupus? I certainly don't want it to be but I'm desperate for an answer. December is far away, my meds aren't helping my hands, and it seems like more problems keep cropping up. Thanks for any advice.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/14/2015 1:50 PM (GMT -6)   
Most auto-immune diseases are diagnosed by symptoms rather than by blood tests, including Lupus. Check out the symptoms used to diagnose Lupus in the link below, Diagnosing Lupus.

Have you considered Sjogren's Syndrome?

Lupus & Sjogren's are both handled by rheumatologists - so I would hope that if it were either of those your current Dr could diagnose.

You say you use steroids for headaches -- do the steroids make your hands feel better?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Aug 2014
Total Posts : 36
   Posted 7/14/2015 5:00 PM (GMT -6)   
My previous rheum considered sjogrens, which is actually what my mother has, but didn't want to give an official diagnosis. Prednisone did help my hands feel much better.

Veteran Member

Date Joined Aug 2014
Total Posts : 1526
   Posted 7/18/2015 11:50 PM (GMT -6)   
I had most symptoms like yours and much worse but I tested positive for auto immune.
Your symptoms point a lot for lupus but sometimes it takes time to show up in blood work.
Planequenil did nothing for me and has multiple side effects .So I stopped it.
Just stay away from sun and hot showers .
Hugs ,Take care
MDD,Anxiety Disorder,Panic Disorder,Lupus,Fibromyalgia and so much .......

New Member

Date Joined May 2008
Total Posts : 13
   Posted 7/25/2015 10:34 PM (GMT -6)   
Do you have any fatigue? You just mentioned joint pain. It could be a mild lupus like illness, like my rheumy called it. It can vary in intensity from one person to another. I didn't get a positive ANA till 5 years into it.

Regular Member

Date Joined Aug 2014
Total Posts : 36
   Posted 8/17/2015 12:43 PM (GMT -6)   
Yes I do have fatigue. It's been better lately, I think the plaquenil helped with that. But when all this started I would be so exhausted all the time
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