Hello all. . So is anyone here also diagnosed with relapsing polycondritus? ?? It's is a rare disease so unfortunately I have had very little success in finding others that have it to communicate with. . RP have some similarities with WG especially that affects the upper respiratory system and can cause "saddle nose " deformity. . Having both Wagners and polycondritus is causing serious havoc in lungs, airways and as of October my left sinuse and fluid /inflammation of mastoid aircell. . Just had a CT of my sinuse and facial structure a few weeks ago because the area above my left nostnostril to tear duck on the side of my nose has been soooo soar and squishing feeling, like i was hit :/ I was also having much more tinnitus and dizziness. . The CT showed partial opacification(fluid ) in all left mastoid aircells and now erosion and sclerosis in bone ... can't believe it's gotten so much worse in only 4 months. . Just started rituxan 2 weeks for vasculits. . I did do 6 months of Cytoxin last year and it definitely helped my lungs for a couple of months but my stubborn body just fought against it .. feeling hopefull the Rituxan will help for at least a bit today was the first day in several weeks i didn't need my oxogen tank yaaaay! My rheumatologist said they're using Rituxan "off label " to treat relocation polycondritus witch is awesome for me .. i have very little to no cartilage left in all of my large joints and the RP is starting to attack my lower spine and pelvis. Unfortunately none of the bone and joint damage is reversable and im a candidate for joint replacements because im perpetually in a flare and am only 35. Soooo hopefully the Rituxan will stall my diseases progression soon! ?!?!
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