Patient Comments: Relapsing Polychondritis - Symptoms

Question:

What symptoms do you experience with your relapsing polychondritis? Submit Your Comment

Comment from: Natalie, 25-34 Female (Patient) Published: February 27

I am having trouble finding a doctor to diagnose me. I have type one diabetes, Hashimoto's thyroiditis, a small cyst on my left hypothalamus, endometriosis, gastroparesis, and a few other issues. Symptoms I have that make me think I have relapsing polychondritis are, inflamed, red, and painful ears since childhood, nose pain that began last June - feels like cartilage ripping away from bone, nose bleeds since childhood, sternum pain radiating through to back, shoulder and jaw - confirmed non-cardiac, throat pain and tightness, regular hoarse voice, and joint pain.

Comment from: Katen, 45-54 Female (Patient) Published: July 31

My ear cartilage bleeds, swells and hurts. Inside my nose I have sores, blood, and scabs. On top of the nose, during flare up, I have bleeding and swelling. I have inner ear problems and times I thought I had strep throat which ended up being my relapsing polychondritis affecting my throat which hurts bad. Sometimes I choke. Brain aneurysms were coiled and/or clamped but they could not reach the one under my left eye. I am having my right eye cataract surgery by the end of August 2019, most likely caused from the prednisone. I also have seizures and take Keppra for breakthroughs.

Comment from: RLC33, 25-34 Female (Patient) Published: August 21

I get the ear, facial, tracheal, and joint swelling and pain from relapsing polychondritis. I also get fevers and my vision is bothered. I get horrible chest pain from the swelling of the cartilage around the sternum and between the ribs, which lowers my oxygen saturation. I also get extremely fatigued. Currently I don't have a doctor for this, mine had to move away, leaving me with just a nurse practitioner to see, to whom I actually had to explain what relapsing polychondritis is.

Comment from: Tracy, 35-44 Female (Patient) Published: November 09

I took Accutane in 2008 for 5 months and now, 8 years later, I finally have a diagnosis of relapsing polychondritis (RP), along with Sjogren’s syndrome. Both I believe may have been a result of the Accutane because Accutane dries. I am now 40 and have frequent red hot burning ears, 24/7 red hot burning eyes, joint pain in the wrists so bad I have had 5 exploratory surgeries and this awful disease has even started breaking down the cartilage in my spine. I have had a level 2 fusion already and my back and neck stay inflamed and in knots. My rheumatologist has tried a few medicines but I have had no symptom relief. I am now working with a holistic practitioner to try and get to the bottom of why my immune system has turned on me.

Comment from: Joy, 45-54 Female (Patient) Published: June 16

My symptoms of relapsing polychondritis are ear swelling and pain, headache, diarrhea, joint pain and swelling, a feeling of bruised ribs and sometimes sternal pain. It surprises me how I can feel kind of okay one day and the next day feel like I was run over by a semi-truck.

Comment from: Bill, 45-54 Male (Patient) Published: February 02

I have had reoccurring polychondritis of both ears approximately 8 times and have used heavy doses of antibiotics including IVs, prednisone which caused a panic attack/mania, and also Dapsone. I have also been using pain medication and icing the ears. All of the treatments are reactionary and episodes last from 3 days to two weeks.

Comment from: April, 55-64 Female (Patient) Published: May 09

With relapsing polychondritis, I have ear and facial swelling, fatigue, diarrhea, arthritis, pain in the back, ribs, knees, and arms.

Comment from: Ireland, 55-64 Female (Patient) Published: April 03

I am a healthcare professional and took the hepatitis vaccine when it was a live virus. Five of us who took the vaccine became severely ill two days after getting the vaccine. We ran high fevers, had severe joint pain, and extreme nausea. Six months later I had a 30-pound weight loss, perirectal abscess and hepatitis. I was in the hospital for seven days with a bilirubin level of 32. I continued to be ill for several months. Then I experienced inflamed ears, joint pain, extreme weakness, and fatigue. I went to doctor after doctor for years and thought I was crazy. I researched and after 15 years found a doctor who was a genius and told me my diagnosis was correct. After years of tests, MRIs, and spinal taps, I was sent to a rheumatologist. I was his first patient with this dreadful disease. I was put on Plaquenil and prednisone. I am currently on purified fish oil, turmeric, and tart cherry. I continue to take Plaqueni and prednisone. It has been a long and difficult road. I have remained optimistic, but my life is far from normal. I have retired from my nursing career which I loved. I have had two hip replacements and thoracic laminectomy. I still remain negative for all types of hepatitis. I just wished someone would have listened from the beginning about the vaccine. You know your body and it seems that if you are knowledgeable in your area you can be shoved under a rug. I have relapses and it affects my husband, children and my grandchildren. I pray for those who have this awful disease. I continue to push forward, keep a healthy weight, and maintain exercise. I wish there was a cure for the fatigue; it's devastating when you want to live life so badly. Please listen to your patients.

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The term arthritis refers to stiffness in the joints. See Answer

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