Back Again- ANA still positive

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/5/2014 8:27 AM (GMT -6)   
Hey everyone!
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) nono

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
Constant fatigue
Depression
Anxiety
Burning pain in the stomach
Mouth Ulcers
Nausea
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.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 3/5/2014 10:41 AM (GMT -6)   
It does sound like Lupus may be the culprit. Fortunately, we have several meds that help with Lupus symptoms, and some of us even obtain a kind of remission.

I hope your rheumy calls soon with a plan of action!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/5/2014 10:58 AM (GMT -6)   
Thanks for the reply :) I hope so too! My primary doctor (an internist) is the one who ran all these labs... First time seeing her but I love her, she's great and VERY thorough - she even wanted to consider something called a pheochromocytoma, a rare adrenal gland tumor, because it matched a lot of my symptoms and she didn't want to just write me off when the "normal" stuff didn't pan out. It's nice to finally have a doctor listen to me, consider the possibilities and actually try to make me feel better.

I just sent her an email through the patient web portal asking about the possibility of this just being lupus, so hopefully she will respond soon and get with my old Rheumatologist if needed for a plan. I'm very anxious to just start feeling better because it's been interfering with every aspect of my life lately and I'm over it!
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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/5/2014 3:27 PM (GMT -6)   
Welcome back and sorry you've got to deal with this stinking disease. But Sherrie's right about the medications. Once they start treating you with the right mix of drugs you'll start feeling better.
Joy
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! :))

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/5/2014 3:45 PM (GMT -6)   
Thanks! :) My doc called me finally and agreed that while she supposes the antibodies could still be elevated even now if it had been drug induced, the fact that I had dsDNA antibodies before is pretty indicative of SLE and I should have been treated for that long ago. She asked me to make an appt with my rheumatologist to have all the other things retested and said she would start me on Plaquenil now to hopefully help ease my symptoms in the meantime. I surprisingly was able to get an appt with the rheum tomorrow morning so this should move along nicely. Phew.
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.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/7/2014 11:55 AM (GMT -6)   
I went to the rheumatologist yesterday.. Apparently, he had it noted in my chart that it was SLE all along - he originally wanted to treat me with Plaquenil and discuss with my GI on whether or not I should continue Remicade therapy... I had forgotten that we decided to stop the Remicade and see what happened before proceeding with lupus meds... And since I felt okay after that, I just never followed up and assumed it was all drug induced! But he noted that since I had dsDNA antibodies, it is HIGHLY unlikely that it was DILE and since I am also now showing all the symptoms again after 2 years, it's likely I've just been in remission and am flaring again.

It's interesting, I've been reading old posts since even two years before starting Remicade, and thinking back on all the times doctors have said to me "Hmm... that's weird, I don't know what could be causing this" or "You're testing negative for the flu, but it seems like the flu, so that's what I'm calling it anyway"... And makes me wonder how long its really just been lupus.

So, he put me on prednisone which I am NOT happy about - I've spent enough time on this with my UC and having to take it again felt so defeating :( .. But he did a chest xray and some labs and I have a follow up on 3/19 to discuss those results and go from there, regarding starting a maintenance med and whatnot.

I guess at least now I'm no longer "weird" or "interesting" and I finally have an explanation for how I've been feeling for... forever.
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.

GabbyChick
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 3/7/2014 3:01 PM (GMT -6)   
Hello!

For anyone who is feeling better...

I think I hear music!
Hallelujah! Hallelujah! Hallelujah! Hallelujah!

Yes, even more music...
Rejoice! Rejoice! Rejoice! Rejoice!

Just too awesome for words!
Melaine<3
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