My RP started with the red, swollen, painful ears. In fact, I had it for almost 2 years before I even went to a doctor. I probably wouldn't have gone then except the pain was so bad it was keeping me awake a night. I was one of the lucky ones, my GP knew exactly what it was the minute she saw it.

My first symptom was a sore throat and laryngitis that wouldn't get better two years ago. I was about five weeks with a whispy voice. Constant sinus infections with serious nose aches. I thought I broke it. The antibiotics made it worse. I even asked a doctor once if there was a connection between inflammation and woman's monthly cycles. I was getting sinus infections monthly. He just gave me prednisone and I got better. Next step: developed vitilago. Then the red ears, started when I was tired. Mysteriously at 3 p.m every day I was getting red ears and strange bumps on my face and forehead. Finally, developed a blood clot: they found anticardiolipin enzyme syndrome. Which is sticky platelets. Aspirin was a wonder drug for this condition. I felt like a tin man from the Wizard of Oz. The worse the weather got -- the stiffer I got and redder my ears. The next step: huge ear infection which came on real fast with hearing difficulty. Then eye pain with seeing problems. Mind you these waxed and waned and the only factor that was stable was the 3 p.m. timeframe. I got worse at the end of the afternoon.

.As far as my symptoms first appearing it was in 1993 that I had a cold that developed into a raging cough(cracked two ribs with cough)that started it all. It was first diagnosed as the flu then pneumonia, and on and on...then finally sent to a specialist and then he looked at me and said...perhaps we should explore the lungs for ;Hello..."Cancer"; which they did..operated and clear as a bell....hmmmmmm next 'probable cause' something rare called Relapsing Polychondritis..hmm still not sure... heavy doses of Prednisone..bingo...Instant response, NO cough...extremely high energy and all the fun stuff associated with Pred...have lived with that asssumption for the past 6 years, 99% verified at the University of Washington in Seattle in Jan of 1998 with a rigid bronscopy and a battery of tests..stenting an option for the future, left mainstream bronchus closed, trachea completely calcified...my peak flow is at a steady 300, on Pred this week 325..and off on Thursday. Only on Pred for 1 week, because of flare up in legs pain, also chest sore...ear has been painful in past but just right ear and the top half of it.

In 1991, Dad went to an Ear, Nose and Throat specialist because of an inflammation of his ears - swelling, redness and severe pain. That Dr., while intrigued, did not recognize the disease. However, he did prescribe Prednisone which abated the symptoms. He referred Dad to a dermatologist who diagnosed RP.

I probably started with symptoms in 1969. I had an eye flare of episcleritis
and the hospital tested me for different things since episcleritis is not a
common eye condition but at that time found nothing. Through the years I have
had various joint pain and swelling particularly of the neck and knees. I had
a nose flare and the doctor thought it was a very bad sinus infection, and
treated it accordingly. I began to suffer miscarriages and still no one made
any connection to autoimmunity. In 1989 my ears flared and the doctor thought
it was an insect bite that got infected, several weeks later and countless
antibiotics that didn't help I went to an ENT. with bag of pills in hand he
looked at me and immediately knew what it was RP. He ordered a biopsy of the
ear and the results were confirmed. He introduced me to prednisone.

My mother had symptoms about 10 yrs. ago, starting with hearing loss. They linked that to something else. The doctors then thought she had allergies and even asthma. It wasn't until two years ago they started seeing redness in her ear. By then she started having breathing difficulties.

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