Cartilage in outer ear

[JeanMarie]

I wonder if anyone has heard of this. I'm currently having a flare. 3 days ago my outer ear lobe turned red & painful. My Rheumy took one look & said "How interesting, you have inflammation in the cartilage of your ear." My experience is whenever a doc says something is interesting you're about to have trouble. :glare:

I'm on 40 mg of pred, waiting for the Rheumy, oncologist & nephrologist to decide on how to proceed with treatment. The flare is so far limited to ears, uveitis, some joint pain, & other assorted stuff. The kidneys & lungs are OK. I've been thinking of getting a consult with Dr. Lebovics but I don't even know if he handles outer ears. I've not had tracheal stenosis or saddle nose in the past (there's always a first time) So my question is has anyone had Wegs in the ear lobe & if so did it clear up with treatment or did it remain a problem like a saddle nose?

Thanks to everyone!

[annekat]

There was someone on here whose whole outer ears, or at least one of them, was completely inflamed. I don't remember her user name, and it might have been as long as a year ago, so you might try some searches on the keywords you think might work.

[mishb]

Wow JeanMarie this is really interesting.

My ears used to always be bright red and burning hot and hurt like crazy.....not anymore, however both of my daughters also have this problem.

I never even thought of inflammation or what it could mean - it's just something we/they have lived with :unsure:

[Alysia]

I also remember that there was someone here with such a problem....
I hope that you will recover soon from the flare and feel better. :hug2:

[annekat]

I remembered the username of that person, it was boonickel. Her last post was in 11/13. You can find her posts by going to her profile under community and member list. She had some trouble posting a pic of her ear but some may have been able to see it.... Anyway, she was started on RTX (rituxan) and we can only hope that cleared things up for her. She might not mind a private message.

[JeanMarie]

Wow, you guys are great, I can't believe your memories. Its good to know there's at least one other like me. She hasn't been here in such a long while, I'm a little reluctant to pm her--still thinking about it.

Many, many thanks!!!

[annekat]

Wow, you guys are great, I can't believe your memories. Its good to know there's at least one other like me. She hasn't been here in such a long while, I'm a little reluctant to pm her--still thinking about it.

Many, many thanks!!! Well, actually, all I remembered was that "boo" was in her username. So I looked at the member list and found boonickel and knew that was it. I don't blame you for feeling reluctant to PM her at this point... although she might not mind a bit.

[Miska]

When I was seeing my Rheumy for the first time I remember him asking this question about my ears being red hot. He said that was a symptom of another form of vasculitis. I can't remember the name though. Selective brain fog I guess. :/

[Alysia]

this is the thread: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3430-help-help-help.html
if you are writing a post on it, it might be a way to ask her, in a way more comfortble... she will prob get notification to her e-mail about posting on her thread. she might be glad to share.
Anne, I am amazed from your memory :thumbsup:

[windchime]

Is this by any chance what you are talking about Anne?

Relapsing polychondritis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Relapsing_polychondritis)

[annekat]

Could be, Cindy.... I only remember the thread and that I actually exchanged a couple emails with her in regard to the picture of her ear... but she stopped posting soon after saying she'd been started on RTX. So we didn't get an answer as to why the ears were so swollen.

Alysia, I should have thought of that.... she would likely get an email notification that someone had replied to her thread. Then she might be motivated to respond.

[JeanMarie]

Thanks for the link. Polychondritis is what I've been worrying about. Right now I'm scheduled to start RTX on 5/29. I think I'll make an appointment with Dr. Lebovics. I'm short of breath & I had a chest xray & it didn't show anything. I had a pulmonary embolism a few years ago so there is lung damage but I'm concerned something new is starting.

My Rheumy is confident that the RTX will kick it down--something new all the time with this wonderful disease!!!

Be well everyone!!!

[windchime]

Thanks for the link. Polychondritis is what I've been worrying about. Right now I'm scheduled to start RTX on 5/29. I think I'll make an appointment with Dr. Lebovics. I'm short of breath & I had a chest xray & it didn't show anything. I had a pulmonary embolism a few years ago so there is lung damage but I'm concerned something new is starting.

My Rheumy is confident that the RTX will kick it down--something new all the time with this wonderful disease!!!

Be well everyone!!!

From experience a chest X-ray doesn't show everything. Try to get a CT if you can. Please keep us posted.

[JeanMarie]

You're right Cindy, but I've had so many CT's, I'm trying to avoid them if I can. :rolleyes1:

[windchime]

You're right Cindy, but I've had so many CT's, I'm trying to avoid them if I can. :rolleyes1:

I know I get them every 6 months one of which was in April and I had another this month for something else. I'm sure I glow in the dark since they were with contrast. :ohmy: But if you are SOB you should get one. Just my two cents worth. :rolleyes1:

[JeanMarie]

Just an update. I had my 1st of 4 RTX treatments on 6/3. All went well other than the usual can't find a vein stuff. I lost track after the 4th stab. My rheumy has a new infusion nurse. She is lovely & sweet, but I'd rather a nasty one who hits the vein on the 1st try. So far so good I am doing well. The ear is better too. I saw my nephrologist on 6/4 & she said she has one other patient who will get inflamed cartilage in her ear when she flares. That makes 2 of us.

The hope now is the RTX + I also get 250 mg solumedrol will knock the wegs back down. Things are looking up!

Be Well!!!!!

[Beverly]

Hi Jean Marie....A few yrs ago I had very red ears, swollen:w00t: and painful. Went to primary care doc who called rheumy. I am pretty sure they upped pred but don't know how much.
I am glad to hear you are doing better after infusion. That should hopefully keep some of the flares from happening. Just wanted you to know there are others to whom flares ear have happened. Look forward to hearing more about your recovery! :thumbsup: