It's been a while since I've posted but have a question about this Anti-RNA Polymerase and can't find any up to date articles. Gareth has been positive Anti-RNAP 1/111 since Nov 06. They did 3 tests and all 3 were positive with the titres going up each time. Last titre was 81(2009) but there are no articles that relate disease to titre numbers. We have kept him on our primary insurance because of all his medical issues but that will end in May, when he turns 26 years old, and will be strictly Medical Access. He has a rheumatology appointment in two weeks and I'm thinking of asking for another RNAP test to see if the titres are still going up, but I'm not sure what the justification would be for the asking? Does that make sense? I'm wondering if I should get all of them done again....ANA, Sjogren's, ARNP.....not knowing what the future holds for medical testing come May.
By the way, he's been doing the IVIg infusions for 2 years now, every 4 weeks, and has only had pneumonia/ear/sinus infection once!! He is still tired all the time and in chronic pain (legs) but no one seems to understand why. The doctors just say "it's the autoimmune/connective tissue disease". Very frustrating!!
Thanks for all your help,
Mom to Gareth, 25 years old, DS-ASD