Ear inflammation!!! Relapsing polychondritis symptom

Hi. How are you?? I hope you all are having a good night and a better day and might tomorrow ..

I have a question for you., I have severe relapsing polychondritis and am in lung failure with trachealbronchialmalacia with a permanent tracheostomy.

I was diagnosed last week with 20% bilateral nerve damage/deafness in my ears (no wonder I was "yelling" at everyone when I thought I was speaking in a notn tone of voicemail.

Last night, for the First! Time, I noticed that my right ear was bright red, inflamed and also was beginning to curl inward; looking line the cauliflower shape of the relapsing polychondritis ear. The ears are usually the first sign if this disease and the trachea is the last. My doctors have never seen a patient have the pulmonary system collapse first.

Today was the day I took my Prednidjbe pill; I take kne every other day; my ear is not so inflamed today.

Has anyone had this ear inflammation?,

Report post

7 replies. Join the discussion

If so,shag were your experiences??? How long did this inflammation last? Did it reoccur?? How much, if any,Prednisjbe, did you take??

Thanks for your support !!! It means sooo very much for me...

Peace, Stacey

Blessings snd and Joy always!!

Report post

Stacy, after I read your posting I realized how lucky I am. You sound as if you are going thru so much and at a young age. I hope you get the answers you need to your questions. Good luck with the ear situation. There should be someone on this site who can point you in the right direction.

Mary

Report post

Stacey , did u google relapsing polychondritis.? Thought that was interesting. I didn't know what it was and I'm soo sorry you re having to fight that as well as everything else. You've proved yourself strong with all your lung issues so hang in their! We will be praying for you. God bless and lots of hugs, too.

Report post

Hi! Thanks for your suggestions and prayers. RP is constant inflammation that happens to different body parts and continually changes from knee to back for example. The blood tests do not show much of anything, which is one indicator of this disease.

It is such a drag, all if our diseases are. However, this forum really helps me be connected to others who have similar problems ... So the" I am the the only one" feeling is gone.
I hope you have a terrific weekend.

Peace and Joy.
Stacey ;)

Report post

Sometimes large doses of steroids IV are used to shut down the process then tapered. Cytoxin and other drugs are used in conjunction for control.

Report post

Thanks for your suggestions and much needed advice...
I do appreciate it very much.

Take care,
Stacey :)

Report post

i'm a relapsing polychondritis survivor. the disease manifested when i was 18 and the cartilage of my nose collapsed. i had many many relapses over the years and was not correctly diagnosed until 1995 when i was 43 yrs old. the good news for you, stacey, is that you have a correct diagnosis and are being treated with the proper drugs. i used conventional medicine, alternative care therapies and yoga and meditation to conquer the last severe relapse i had in 1995 when i was given 5 years to live. you are being very brave! and i respect you for standing up to this disease, and reaching out and seeking information and advice. having all the mercury fillings removed from my teeth, cutting out sugar and gluten and alkalizing my diet were some of the things i did to overcome this threatening condition. i lost all my hearing in 1997 in the course of 13 rounds of cytoxan chemotherapy being administered in a attempt to suppress my immune system that was attacking me. i also had lots of eye involvement (iritis/episcleritis), trachea, intercostal cartilage, outer ear involvement and bilateral vestibulopathy (the balance loops in my ear are destroyed). let me know if i can help you; my contact info is at yogic-tools.com where you will find my story

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Pulmonary Fibrosis Foundation

Help the Pulmonary Fibrosis Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Pulmonary Fibrosis Foundation

Discussion topics

Pulmonary Fibrosis Awareness Day

Pulmonary Fibrosis Awareness Day

PFF Summit 2015

PFF Summit 2015

PFF Care Center Network

Links and Resources from the PFF

Community leaders

Disclaimer

The Pulmonary Fibrosis Foundation (PFF) would like to remind visitors and group members that information found in the PFF Support Community should not be considered a replacement for a consultation with a qualified healthcare professional. Please consult your personal physician regarding any medical information that is shared on this site. Any views or opinions expressed on this site are not necessarily those of the PFF.