| Crohn's dx, positive ANA and malar rash, lupus too?
This is going to be pretty long and i apologize but I would love some advice.
I have had crohns colitis for 8 years and I wish I knew what I know now back then, so I was hoping someone who has dealt with lupus could help. Particularly people with crohns and lupus or multiple autoimmune diseases.
The past year I've been having strange symptoms, such as stomach pain (unlike the usual flares), 30 pound weight loss, really bad joint pain in my hands (never had it in hands before, only knees) and fatigue.
I though it was a crohns flare so I had several colonoscopies which showed my disease wasn't active, or not active enough to be causing my symptoms. Because they couldn't find the source after mris, ct scans, colonoscopies, blood tests, etc. they decided it must be IBS with small intestinal bacterial overgrowth on top of crohns even though the pain feels at times worse. And I would know after 8 years of having it and the scarring pattern in my intestines to prove it. Ended up going to the ER 3 times for this but no answers.
This past month I got a butterfly-like rash on my face. I have gotten these before but this one lasted a lot longer (10 days) and was more distinctive, obvious. I took a picture and called my GI who told me to see my primary. Primary said it looked like lupus and tested me for antibodies.
I came up positive for ana speckled and negative for dsDNA. They said im negative for smooth Dna antibodies too. He says to see my rheumatologist who I saw earlier this year because I all the sudden got really bad joint pain in my hands. Was told the joint pain looked like crohns arthritis that would go away when my flare subsided, only now I know I wasn't in an actual crohns flare at all. I still have it too.
Anyway, now my GI is saying that people on remicade get ANA positive results. I see the rheumie next week and I'm also waiting on the titer results of the ANA test.
I'm confused because I seem to fit the symptoms of lupus but they overlap so much with crohns that doctors are being extremely hesitant to even test me for it. I think it seems highly suspect that I would test positive at the same time I have a malar type rash...
Is this what you guys have to go through to get a diagnosis? Does anyone deal with multiple autoimmune diseases, and how did they identify the two as separate? And anyone who has gastro issues with lupus, can u tell me what your symptoms are? Anyone diagnosed with lupus while on remicade? How long after taking remicade did you get lupus like symptoms?
Here's my symptom list:
- malar rash
- positive Ana (waiting on titer)
- break out in little red dots when I'm in sun, especially on legs
- weight loss of 30 lbs
- joint pain especially in hands
- stomach pain
- low fevers around 100
- hair is thinner
May or may not have to do with anything:
- frequent nose bleeds
- swollen ankles
- once had clotting issues that forced a liver biopsy to be cancelled (a while ago)
- on remicade
- itchy skin
- night sweats
- bad menstrual cramps
- toenails sometimes turn blueish but not fingers
Thank you for reading this far and I hope I can find someone who can relate. It's hard enough to find someone with just crohns. It's especially hard because the symptoms all overlap and one specialist tells me to see the other, I feel like I'm being tossed around with no bigger picture perspective.
I'm sure ill find out a lot more at my rheumie appt as well as when I find out the titer rate, but that's a week away.
Wish I could post pictures. I'd show u the face rash.
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