Posted 8/5/2018 1:57 PM (GMT 0)
Back around April my daughter came down with incredibly painful symptoms all over her body, including skin that felt like it was burning. She lost all strength and with it all muscle tone. Walking anywhere was exhausting.
She had a colonoscopy and endoscopy and they looked good so the dr took her off the remicade and for good measure the Apriso and probiotics.
So far she is holding her own in the GI tract but is still having the body weakness and pain in some joints, especially her hands.
Blood work showed double stranded Ana and also systemic lupus, antibodies. There was no specific remicade antibody test. I don't know why.
Can anyone tell me if they have had this, and what happens if you flare.
The rheumatologist ( takes no insurance) seems to have given up because the pain didn't respond to very high amounts of steroids both oral and injection, he said there's lupus but there must be something else causing the pain because lupus would have responded to the steroids.
The GI doesn't want to see her if she isn't having ibd issues, and we're lost, she would like to see a hemotologist, does that sound like the right next step, after all she was on the Remicade for 5 years?
Any input would be appreciated.
She was in a very stressful situation leading up to this, it has abated but she isn't back to normal physically.
Thank you