Relapsing polychondritis

[trebar]

Hello, everyone.

I was diagnosed with MPA ten years ago and have recently had a nasty flare which has been treated with Rituximab but this time does not seem to be working too well. I have had a very inflamed outer ear ( the pinna) which has been itchy and developed nodules along the edge of it. Did a little research on the internet and, apparently, this can be a symptom of another auto-immune disease - often associated with vasculitis - called relapsing polychondritis. Just wondered if anyone had come across this as it seems to be affecting all my joints as well (I am currently waiting a third joint replacement). I believe this is very rare ,3.5 people in a million is quoted but would like to know what the best treatment is if Rituximab is not working.

Thank you.

[AmyS1]

Hello there is information about relapsing polychondritis on the vasculitis website. Yes it is rare you need to see a vaculitis specialist who knows about it. Prof DCRUZ at Guys specialises in it. The treatment is usually high dose steroids and methotrexate. Ritiximab usually doesn't work for RP. Infliximab is used in some cases. Hope this is helpful.

[trebar in reply to AmyS1]

Thank you for your reply AmyS1. Very helpful. Good to know that there is a specialist somewhere. At the moment, I am attending my own local hospital and Addenbrookes but will do some more research on the Vasculitis UK website first. Thank you very much.

[AmyS1 in reply to trebar]

Dr Jayne at Addenbrookes is excellent. He has plenty of patients with relapsing polychondritis he also gets infliximab for them which can be very effective.

[trebar in reply to AmyS1]

Ooh, thank you so much. I will mention it the next time I go to Addenbrookes in August, then. You have been really helpful. Hope you are keeping well yourself. Sending you my best wishes.

[AmyS1]

Nb do NOT wait until August. Phone today and get your appointment brought forward. You need to look after yourself. August is too long to wait.

[trebar]

Once again, AmyS1, thank you for your advice. I have left a message with the vasculitis nurse at Addenbrookes to ask if I could voice my concerns to one of the consultants and bring my appointment forward so am hoping to hear from them about it in a few days.

Hope your illness settles down and gives you as little trouble as possible.

Best wishes,

Trebar