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Relapsing Polychondritis

October 5, 2014

About 12 years or so ago, I had this bizarre phenomenon begin. At random times one of my ears would turn beat red and begin hurting. It only lasted about 15 to 30 minutes at a time and I never really gave it too much thought, but I thought it curious that I couldn’t find anyone who knew what it was. I had asked my PCP, the kid’s pediatrician, an allergist, really any medical person that I came across. None of them had an answer for me, and some of them looked at me as if I was crazy. I was beginning to think it was something I was imagining. The only problem with that was that others had seen it happen.

Approximately 5 years ago, I had an injury that left me in a tremendous amount of pain and ultimately believing that a normal lifestyle was out of reach. Through the process of seeing doctors of various specialties, I happened into the office of a world-renowned rheumatologist. While there, I asked him the question… Without hesitation, he told me that what I have is relapsing polychondritis. In a nutshell, any of the cartilage in my body can suddenly become inflamed, including my nose, ears, joints, trachea, mitral valve, etc. For years I had thought the red ear thing was amusing. My doctor warned me that if my airway becomes involved, I shouldn’t hesitate to call 9-1-1. Shortly after my diagnosis, I had a new experience when my nose, only the right half, became inflamed and painful. This time, instead of lasting only a little while, it lasted 3 days before I sought medical attention. I was put on a ten day prednisone taper. After a day or two, the swelling began subsiding, then on day 5 or 6, the swelling increased again. Eventually it did clear up with prednisone.

Over the next year, I would have multiple flares, usually not requiring prednisone, until August of 2013. I had a flare with my nose, but I also felt as though I had an elephant sitting on my upper chest. Scared, I had Jeff take me to the emergency room. Unfortunately, the doc I saw there was not familiar with my disease. He looked it up and put me on 60 mg of predisone. I had never had more than 20 mgs and my body immediately went haywire. I could barely get out of bed, I had no interest in anything, I sat and cried for no reason, and I thought about the many ways that I could just simply end it all. Jeff, recognizing that something was very wrong wouldn’t leave me alone. If he couldn’t be there, he would make sure the girls were with me. That lasted about 2 weeks, but then as I began feeling somewhat more normal, I felt disconnected from everything going on around me. The only way I can describe it is that state just before you fall asleep or just as you wake up, when you can hear what is going on but you can’t really interact with other people or things around you. I saw 3 different doctors before it was recognized as a form of dissociative disorder brought on by the prednisone. Rest and a slower taper eventually put me right.

By the time I saw my rheumatologist again, he was rather concerned about the flare I had experienced, particularly since it involved my airway.  I had previously refused to go on an anti TNF drug, for another suspected rheumatological disease, but now it seemed wise to go on something to try to prevent further flares. So, I began taking methotrexate. From August through October of 2013 I was on both MTX and a very low dose of prednisone, while the MTX built up in my system. I also needed to come slowly off of the prednisone to prevent further dissociative symptoms.

I have been fully on MTX for about one year now, and the side effects suck! I am frequently exhausted, in a brain fog, and I struggle to feel normal. In addition to the MTX I have to take folate to minimize side effects (haha), vitamin B to keep me as even keeled as possible, and biotin to keep my hair from falling out (a nasty side effect of MTX). In addition, I have to go for blood work every 8 weeks to make sure my liver is okay.

At the end of August this year, I hit the proverbial wall and decided it was time for a change…

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