Hi, I am Alliand. , I sense the anxiety and frustration as well as optimism in most of you. I am from Southern New Jersey, near Philadelphia,PA. I am PR3 positive after experiecing severe upper body pain; from shoulders to fingers; never experienced before, preceded by 2 bouts of vague viral feelings, about 10 days each May. 2016.and Sept.2016. The upper body pain abruptly started 2 or 3 days after the 2nd viral episode.
. A "top doc" rheumatologist ordered many blood tests and the only thing that was positive was the presence of the PR3 antibody. Diagnosis: C-ANCA vasculitis. Polymyositis rheumatic was considered as well.
Started on 16mg prednisone, felt miraculously better very quickly. Had no perception of lung or kidney problems, just musculoskeletal. Got a 2nd opinion from a Professor in the Vasculitis unit at Johns Hopkins in Baltimore in April, 2017. Many more blood tests repeated and then some, and again, the only positive result PR3 antibody at a low titre 1.1. She was thorough, and concluded that such diagnosis of systemic vasculitis was premature; I have tried tapering very slowly per her guidance, resulting in extreme lethargy which is to be expected, until I lost vision in my left eye in Novemer, 2016 for about 7 minutes , after which it returned to normal.. To protect my vision, I unilaterally returned to 16 mg again.
Saw eye doctor who could not find any reason within the eyes; did some other tests to rule out optic nerve problem; none. She concluded it must be a vascular issue. When I taper below 8 mg. , original pain comes back, but more mildly.
I do not want to become a professional patient and would like to be enjoying life, but fatigue can be overwhelming some days.
I WANT TO ADD THAT IN 2014, I HAD A TROPICAL MOSQUITO BORN VIRUS CALLED CHIKUNGUNYA WHILE IN THE CARIBBEAN. Research shows that people over 65 start to develop chronic arthritic/autoimmune syptoms about 2 years after the acute infection resolves. Seeing more and more chickungunya connections to autoimmune disorders online in scholarly works.
Feeling lost at this point. Two conflicting opinions; still afraid to taper again. Has anyone had this tropical virus? Or any other ideas or experiences to share? Thanks.