Hello, I'm doing this on behalf of my 18 yr old son. His Lupus diagnosis is "weak" at this time, testing pos for ANA, low platelets, and double-stranded dna. He is C4 deficient as well which runs in our family. My mother has SLE, my daughter and I both have ITP, also autoimmune. My son also has an immune deficiency and has been on prophalactic antibiotics for nearly 6 years now after having near fatal infections several times.
Four months now since he became extremely fatigued and weak with joint and muscle pain, inability to concentrate. The severity changes from moment to moment, but it happened overnight and has never gotten better. He's had "episodes" of these symptoms before, I thought he was fighting a virus. No infection signs, just weak, tired, joint pain. Then, 3-7 days later, he'd start getting better. Now, no better. Now, he walks routinely with a cane and needs a wheelchair for any distance or time. He's lost 17 pounds. He is 6'4 and now only weighs 150. I'm getting shrugs from the rhumey who had the nerve to suggest this could all be extreme deconditioning since his labs aren't getting worse. It is a worry now, but not the cause of whatever is happening. Now, he had a hemiplegic migrain - terrifying. We see a neuro tomorrow and new immunologist with subspecialty of rhumatology Wed.
I'm so frustrated. I want to scream at someone to find an answer for us. He's on 10mg prednisone and 200 plaquinil. 5000mg vit D.
Is this typical? No answers, no seeming motivation by his drs to find some?