New Member/ Advice

[Guest guest]

Hi Pat and welcome to the group. Your ears sure sound like it could be RP.

Painful, red, swollen, throbbing, (did I mention THROBBING)LOL

Yes that is what my first symptoms were too. It began in my right ear. Had

a flare that they treated as cellulitis. (with antibiotics, injections

everyday for 3 weeks) Finally it went away. Didn't have any problems until a

year later and the same thing happened. Again they tried the antibiotics. I

couldn't take it any longer and went to an ENT who diagnosed me with RP. He

put me on prednisone and it went right away within a day. He put me on 80mg

a day and then tapered down I think over a 2-3 week period. I do get flares

in my nose and ribs.

It sounds to me like you need to contact the dr and see if you might need

more pred and at a higher dose. You want to knock out a RP flare as soon as

you can so no damage is done. Hope it isn't RP. But Glenda is right. There

are worse diseases. (although Heidi won't agree)LOL

RP is controlable once you get on the right medications. The meds are all

different for all of us as are our symptoms. Strange huh?

I am 50 and live in California with my husband. Have 3 daughters and a

grandaughter. Am trying to come off of the pred SLOWLY after 3 years of

continual use. Am down to 9mg now. Hope to be off of it forever, but will

be glad with just a small dose.

Keep posting and asking questions. This is how we all learn. Keep us posted

as to how you are doing.

[Guest guest]

Hello all!

I've been poking around the posts here and thought I'd ask a few

questions, but first a brief bit about myself-

I'm a 33 year old Hypothyroid male with other very minor health

concerns (Irritable bowels, rosacea and accompanying vessels, slight

hair loss right in the front)who has just had an initial diagnosis of

auricular chondritis. Sound familiar? If so, unfortunately, I've

probably found the right place.<G> I noticed this last summer my ears

would get quite pink when I would come back to work from lunch, but

having rosacea I assumed the ears were related, just blushing like

the red 'racoon' mask gets on my face. Ah, but then came November,

and it certainly wasn't warm out anymore. Almost every night between

November and now, in the say 6:30 PM and 11:30 PM hours, one or both

of my ears has turned a burning throbbing red! Painful and

embarrasing. Did I mention burning and throbbing?

I finally broke down and saw the doc (HMO) in a box. Although

they don't know much about it, I was diagnosed with the auricular

chondritis, and fear I will hear the dreaded RP in 9 days from a

Rheumatologist (spelling?) assuming the Rheumy has heard of RP. My

immediate questions, besides ANY advice anyone has, are in no order-

When you say flare, in relating to ears, do you mean red hot

burning, blood vessels flaring, cartilidge slightly aching ears?

I had been given a 6 day supply of prednisone, first 3 days at 2x20

mg's, next 3 days at 1x20 mg's. It helps somewhat, but not totally.

(Nice immediate side effects though, can't barely sleep and all of a

darn sudden my lower back aches like I've been power lifting or

something, ouch!)

The span between my fist doc's diagnosis and the my appointment

with the Rheumy is 17 days, unfortunately my pills last only 6 days.

How concerned should I be about this? I also have at least 1 very

noticable white spot on the outer upper rim of one of my ears. I have

been slightly dizzy for about half a year now. Not bad enough to

worry too much about, just enough that if I turn around too quickly

of stand up from a stooped or sitting position I need to stand still

or grab onto something till head clears. One more very odd thing-

Several times this summer and fall, but with DEcreasing severity, I

have had several of what I can only describe as mammoth bruises, with

something like a hard blood clot at the center, on my forearms. I

finally figured out that it happens after roughhousing with the pooch

that my wife and I adopted last year. Saw a specialist about it, he

seemed a bit confused but said something in my blood reacted

strangely with something else they had tested it on. (I'm bad at

remembering medical jargon)

Anyway, hello to all and I hope everyone is feeling above average

today tonight and tomorrow. Pat Crowley

[Guest guest]

Welcome, Pat!

I haven't gotten through all of the posts, so I'm sure others have

replied to you, but I'll add my experience. Yes, the pain and

swelling of the ears and nose is part of what I went through. In

addition, I have suffered from vertigo for about a year now, although

it has responded to the Prednisone.

I would be worried about the prednisone and would call to see if you

can get enough to last until your appt. Your flare is probably not

going to go away on its own, otherwise.

Good luck and welcome!

[Guest guest]

Hi Pat, I don't post very often but reading your questions, I just wanted to warn you on the ears. You're pretty much on the money with your definition of 'flare'. The pain and sensitivity can become so intense, you can't stand for someone to put their arm around your shoulder for fear they'll touch the ear. If it goes on to long the cartilage in the ear deteriorates and the ear is severely deformed. I finally gave up- after first realizing I had liked my ears. Never thought about it before. Now the looks aren't so important, it's what happening to the cartilage you can't see.

After the initial diagnosis, via biopsy, finding this website and hearing about the pred- I called the Rheumy and insisted on a quicker appointment-who wants two deformed ears. So now I only one deformed ear and the other is on it's way. Most of the pain has dissipated, but it seems the deterioration of the cartilage continues-ever so slightly. Now this is not that common- most people have the pain also.

Good luck

Kathy C

New Member/ Advice

Hello all!I've been poking around the posts here and thought I'd ask a few questions, but first a brief bit about myself- I'm a 33 year old Hypothyroid male with other very minor health concerns (Irritable bowels, rosacea and accompanying vessels, slight hair loss right in the front)who has just had an initial diagnosis of auricular chondritis. Sound familiar? If so, unfortunately, I've probably found the right place.<G> I noticed this last summer my ears would get quite pink when I would come back to work from lunch, but having rosacea I assumed the ears were related, just blushing like the red 'racoon' mask gets on my face. Ah, but then came November, and it certainly wasn't warm out anymore. Almost every night between November and now, in the say 6:30 PM and 11:30 PM hours, one or both of my ears has turned a burning throbbing red! Painful and embarrasing. Did I mention burning and throbbing? I finally broke down and saw the doc (HMO) in a box. Although they don't know much about it, I was diagnosed with the auricular chondritis, and fear I will hear the dreaded RP in 9 days from a Rheumatologist (spelling?) assuming the Rheumy has heard of RP. My immediate questions, besides ANY advice anyone has, are in no order- When you say flare, in relating to ears, do you mean red hot burning, blood vessels flaring, cartilidge slightly aching ears? I had been given a 6 day supply of prednisone, first 3 days at 2x20 mg's, next 3 days at 1x20 mg's. It helps somewhat, but not totally. (Nice immediate side effects though, can't barely sleep and all of a darn sudden my lower back aches like I've been power lifting or something, ouch!) The span between my fist doc's diagnosis and the my appointment with the Rheumy is 17 days, unfortunately my pills last only 6 days. How concerned should I be about this? I also have at least 1 very noticable white spot on the outer upper rim of one of my ears. I have been slightly dizzy for about half a year now. Not bad enough to worry too much about, just enough that if I turn around too quickly of stand up from a stooped or sitting position I need to stand still or grab onto something till head clears. One more very odd thing- Several times this summer and fall, but with DEcreasing severity, I have had several of what I can only describe as mammoth bruises, with something like a hard blood clot at the center, on my forearms. I finally figured out that it happens after roughhousing with the pooch that my wife and I adopted last year. Saw a specialist about it, he seemed a bit confused but said something in my blood reacted strangely with something else they had tested it on. (I'm bad at remembering medical jargon) Anyway, hello to all and I hope everyone is feeling above average today tonight and tomorrow. Pat Crowley