@TrixieStix I agree, you need to treat the RP first. your sx to me sound like sjogren's. sjogren's is pretty specific and i have no idea about vasculitis. you're so fortunate to live near a rp doctor and to find a rheum who takes you seriously! travelling wears all of us out. You could post your link in your signature
i'm scheduled for a lip biopsy but i just stumbled upon something really obvious, SFN is associated with EDS, all types, even though it's not an AI disease. i don't even need to have sjogren's to have sfn, lol. i had a qsart test come back negative but now i'm thinking i should get skin biopsies too. i have no idea what they would cost, a little freaked out about that....
my eyes are so dry though that i need to investigate sjogren's. if they weren't i'd just go straight into sfn. so i'm a bit relieved i might not have an AI disease after all.
something else i discovered, in the beginning of this thread i was obsessed with my TIBC/ferritin. my tibc is at the very bottom of the range and so is my ferritin, indicating some sort of disease. and technically EDS isn't a disease. so my guess is it's either low from sjogren's...(not even sure if this is possible) but also on my 23andme results i have one heterozygous snp associated with hemochromatosis.
https://www.snpedia.com/index.php/rs1799945
c;g
One copy of H63D, carrier of hemochromatosis, likely unaffected unless also C282Y carrier.
so maybe it's affecting my ability to process iron but not giving me high ferritin levels, thank god.
..update...
i'm milking my rheum. just asked for a SFN biopsy too lol. if he doesn't give it to me i have another appointment in may with another rheum, i'm positive i could ask him.