Patient Comments: Relapsing Polychondritis - Medications and Treatment


What medications have been effective in treating your relapsing polychondritis? Submit Your Comment

Comment from: Patient in NZ, 35-44 Male (Patient) Published: March 16

I have been living with relapsing polychondritis (RP) for over 20 years. I was diagnosed at a young age, experiencing almost every symptom associated with RP; life was a challenge. It even got so severe I lived with a tracheostomy for half of those years. Now in my 40s RP is managed by a care and treatment plan with my specialist team. But I'm interested in other treatments particularly where it can improve the tracheal damaged by RP, opening up my narrow airway to hopefully giving a full least of life.

Comment from: Pam, 65-74 Female (Patient) Published: May 31

Fifteen years ago my primary care physician sent me to a rheumatologist/immunologist and he quickly made the diagnosis of relapsing polychondritis. He started me on 7.5 mg of methotrexate every Saturday with daily doses of folic acid, pantoprazole, and folic acid to lessen side effects from the methotrexate. I am still on this same regimen 15 years later. Pain levels are generally low and I feel fortunate to have it this manageable.

Comment from: Julie, 45-54 Female (Patient) Published: July 14

I was diagnosed with relapsing polychondritis (RP) about 6 years ago. When I first went to the primary care (PC) office they kept telling me I had cellulitis on my ear and it went from one ear to the other. The PC sent me to an ENT who did a biopsy and determined it was RP and sent me own to a rheumatologist who confirmed it. She also said she thought I had arthritis and a few other immune problems. A few years before, I was diagnosed with gastric cancer and had to have a stomach tumor removed and within 2 years I ended up with RP. I have been on several medications to include prednisone. I was having flare ups every few years and would be on prednisone for months at a time.

Comment from: ChloeFM, 45-54 Female (Patient) Published: April 16

I started to have relapsing poly in 2004, yet I did not know it at the time. I just had some horrible virus for 10 days. I was in bed and could not lift my head from the pillow. I recovered, but was weak. I got married. My young son playfully jumped on me and subluxed my chest area. It hurt, but not horribly. For the next two months, I suffered greatly. I would awaken in the morning screaming in pain because my sternum and rib cage would be so inflamed that I could not move. I tried sleeping on the floor and armchair. Everything hurt. It finally settled down after a few months. I experienced a similar type of pain in both hips, but not from doing anything extraordinary – just walking. In May of 2010 I have a very bad pain incident in my left side as we were about to set sail on a cruise to Bermuda. We almost had to cancel the trip. It was a trying week at sea. I had such pain I almost went to a Bermudian hospital. At the time it seemed gastro-related. Push ahead two years: I have pain in the left side of my rib cage, left hip joint, and left ankle, and my right ear begins to ring and hurt when hearing high-pitched noises. I had to constantly “pop” the right ear. Every time my stomach issue flares, I have pain in my rib, ankle, and hip. This still doesn't paint a picture of something – yet. About two months ago, I started feeling slightly dizzy. I would feel it at various times throughout the day. One time I had to lie down on my kitchen floor. Also, my right ear started to feel swollen and fill up – I had to keep popping it. It hurt to hear high-pitched music. My eyes started to bother me, too. They ached, felt unclear, and looked yellow and bulging. Then my left ear started to get red, painful, and swollen. My ribs and hip started to hurt again. It was so bad I went to urgent care. They diagnosed me with relapsing polychondritis. But my rheumatologist says he doesn't think I have it. He has not seen me since both of my ears flared and the rib pain has become debilitating. I have a hard time breathing when my ribs hurt so badly. The urgent care doctor prescribed prednisone. It has been two weeks and I ended up in the ER twice in four days because of the intense nerve pain in my ribs. I was prescribed Dilaudid and more prednisone. I hope this goes into remission.


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