Polycondritus anyone? ?

[dawncelest]

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! ?!?!

[renidrag]

And you have lupus, don't forget. I'm sorry the area to the left nosnostril to the tear duck has been so soar. What was the determination of the CT of the sinuse and facial structure a few weeks ago? Hard to believe you had six months of CTX and when that didn't work they would switch to Rituxin. Where exactly are you getting treatment, nothing like anything I have seen before. Along with Rheumy going " off label"? Would like to know his name.

[dawncelest]

Yeah can't forget lupus lol. .. hum basically the septum is looks good the sinuse spacing was normal but the polycondritus is causing serious inflammation and damage to the mastoid bone. . The rheumy and ENT said RP can attack the mastoid and i already have the text boox deterioration and reabsorbing of the cartilage on the top of my left ear. That's how i was firmly diagnosed with RP. We can seem to get the inflammation under control no matter how strong the therpy ^treatment im on. Im still on cellcept during rituxan too.. all my specialist are at University of Miami Sylvester. There all amazing and very forward thinking :)

[dawncelest]

I get relapsing /remitting vasculits in the nasal tissue,you know when the doc looks up your nose with the magnification tool with the light on the end.. both specialist agree its the bone and cartilage around the nose that is causing the pain and squishyness

[renidrag]

After Cytoxin and " Rituxin" that's your answer for "squishiness" with no other reply for other symptoms?

[renidrag]

So who is the "off label" Rheumy?

[JeanMarie]

Dawn, At this time I'm not sure if I have RP. At the beginning of my last wegs flare, my ear turned red & was very painful. My Rheumy upped the pred dose & the inflammation went away. I was subsequently treated with RTX for wegs. I haven't had any other signs of RP since then, so we are keeping our fingers crossed. That was July 2014. I've been decreasing the pred since then & I'm down to 5mg a day. Have you checked this site?
Relapsing Polychondritis Awareness and Support Foundation (http://www.polychondritis.org/)

[dawncelest]

My rheumatologist is Christine Savage at university of Miami Sylvester. Off label is a term used for medication being used for a different illness /symptom than originally approved and intended for. My symptoms of the chronic mastoiditis are tinnitus, stabbing temple pain, dizziness and light headed. It all started with an severe painful left sinuse nose bleed in October

[dawncelest]

Hi JeanMarie :) yes i have this site on my Facebook actually. . It's been almost impossible to find recent communications with others with RP . their face book page is more informative and not patient interactive .the do have a yahoo group that is up to date but every time I've tried to join it keeps rejecting my info or says the page is down ,it's very buggy. . My polycondritus is unfortunately systemic, it's hit all my large joints and the text book upper respiratory system and ears. . It took about 6 months from the first time the top of my ear inflamed to it actually reabsorbing and forming nodules. I was having deep inner ear pain ,press and the occasional stabbingwe temple headache 6 months before the first flare so a year of ear symptoms in total before a firm RP diagnosis. I was already diagnosissed with severe SLE and vasculits of the lungs /airway then. I hope you don't have RP but if you do at least it seems like you have an attentive dr that has you on all the right meds :)

[BookNut]

A belated welcome to the group. I am sure you will find a great deal of help here. I have found many ideas to help with my chronic sinusitis, asthma and bronchitis. Even if no one has exactly the same issues as you..I am sure there will be enough overlap to be helpful. And these folks are amazingly sympathetic when you become frustrated with your symptoms and doctors that are sometimes less than helpful! Again...welcome to a really awesome group!

[dawncelest]

Thank you BookNut :) love this group, everyone is super nice and definitely sympathetic. . I understand all about overlapping symptoms lol

[drz]

Yeah can't forget lupus lol. .. hum basically the septum is looks good the sinuse spacing was normal but the polycondritus is causing serious inflammation and damage to the mastoid bone. . The rheumy and ENT said RP can attack the mastoid and i already have the text boox deterioration and reabsorbing of the cartilage on the top of my left ear. That's how i was firmly diagnosed with RP. We can seem to get the inflammation under control no matter how strong the therpy ^treatment im on. Im still on cellcept during rituxan too.. all my specialist are at University of Miami Sylvester. There all amazing and very forward thinking :)

Sounds like a tough problem. Infections tend to make Wegs worse and our broken immune system makes it hard for us to recover from infections. Surgery is also generally out when Wegs is active but getting rid of mastoiditis often requires surgery. I had this surgery several decades ago and it helped clear up the mastoiditis.

[dawncelest]

Yeah tough for sure. . The ENT and Rhuemy say there's no infection but the fluid is from severe chronic inflammation and my mastoid and inner ear symptoms will persist until it gets under control . . I just haven't had much luck controling my systemic inflammationwith with any medicines , dite and holistic included.. i really hope the Rituxan /cellcept combo will at least stall my disease (s) progression