So back in like 2011, I had posted here as my doctors believed I had Drug Induced Lupus from being on Remicade for a few years. I had several bouts of severe lupus symptoms (I had always had some types of symptoms even before Remicade but I also have Ulcerative Colitis so I always chalked the joint pain, fatigue, mouth ulcers, even the occasional discoid rash, etc to that dx and NEVER had lupus tests done before 2011..) Anyway, back then I had a positive ANA Homogeneous with "very high" titre, and my GI and rheum basically said "All the blood work says you have lupus.. But it could be from the Remicade. So your choices are, stay on the Remicade and treat the lupus and UC, or stop the Remicade and hope the lupus symptoms go away."
At this time, I had 9 of the 11 lupus symptoms and have had these symptoms off and on even before Remicade... My urine tests always show protein and blood even without symptoms of a UTI but no doctor had ever investigated further than giving me antibiotics, my CBCs are almost always abnormal but they always blame it on the UC or whatever, and at this time I also had anti-dsDNA detected (haven't checked this again yet).
I was in such agony, I didn't want to risk being stuck with that, so I stopped the Remicade in 2012 and everything cleared up. I've been more or less fine since then and haven't had any of those severe flare symptoms since then. I also never went back and had my labs rechecked (I know, I know)
Anyway... Recently, I have started to feel terrible all the time. I have been having night sweats for some time but the last two months or so they have gotten ridiculous - no matter what I do, I wake up DRENCHED. Every night. And exhausted, all day long, I just fall asleep constantly at work or at home. I can't concentrate or remember things, I'm easily distracted. The mouth ulcers are getting more frequent (I currently have four in my mouth, and when one heals another pops up). But what finally sent me to the doctor were the headaches. I have been getting headaches every single day for 2 1/2 weeks now that are either migraines or sometimes just borderline but nothing I do seems to help them and sometimes I feel so nauseous I can't get out of bed. The doctor ran a whole bunch of tests and lo and behold... My ANA is still positive :( I assumed if the lupus was drug induced, it would go away and my labs would go back to normal after I stopped, but here I am ANA +, homogeneous, 1:640 titre with all sorts of lupus symptoms.
Right now I have been feeling on a regular basis:
Night sweats, every night, enough to need to change the sheets
Daily headaches, not usually responsive to medication. Almost always one sided and severe, sometimes migraines
Photosensitivity, with or without headache, enough that I must always wear sunglasses or stay indoors
Dizziness upon standing, or when stretching
Burning pain in the stomach
Decreased to non-existent libido
Other than the ANA, my blood work was mostly in the normal (or low normal) range except for the following:
BUN/Creatinine Ratio - High
Creatinine - Low
Globulin - High
MCH - High
Vitamin D 25 OH - Low
Cholesterol panel - High/Borderline High, which is crazy because I'm 28 and very active and eating healthy and my numbers haven't gone down at ALL in 5 years.
So that's where I'm at right now. I'm waiting for my doctor to call me and discuss these results and do further testing, but I'm starting to feel like maybe I've just had lupus all along. It would literally explain EVERYTHING in one neat and tidy diagnosis, but of course it's not a diagnosis any of us want!
Sorry for the crazy long post, just wanted to vent to someone who understands and say I might be here to join you all for the long run soon.
Ulcerative Colitis dx 1999 - 2nd major flare started in 2003, tried every medication available, became resistant to prednisone, started Remicade in 2008... Went into remission finally but then developed drug induced Lupus in 2011. Went off Remicade in 2012, lupus symptoms went away and I've been unmedicated and still in remission since then, with occasional flare symptoms lately.