Seriously!? I’ve got what?
I had to ask the Doctor to spell Relapsing Polychondritis. It sounded serious because of all the syllables, but I had no idea what any of it meant, except the Poly bit, because I went to a good school 🙂
Just to set some context, here’s a quick overview of what I was experiencing with my RP: swelling (I mean noticeable from a distance) combined with a lot (and I do mean a lot) of pain (I couldn’t touch or sleep on the swollen area and it throbbed like a headache for up to a full week) and redness in my ears (only the cartilage, not the lobe or the inner ear), then the same in the bridge of my nose, and then (and this is what pushed me over the drug taking edge) impact on my hearing from swelling because the inner ear also has cartilage. This had been going on in varying degrees of severity since 26th August 2016, but I had no idea what it was. Since the initial ear symptoms were similar to unpleasant bug bites, that’s what I assumed they were (I’d been in Houston a fair bit and there are plenty of unpleasant bugs there that would take a nibble). The nose swelling I thought was an allergy combined with a head-butt trauma inflicted by my 2-year-old daughter. It was only after I had repeat ‘bug bites’ on my ears and that the bugs were biting one side and then the other in identical locations that I thought something was a bit off and sought out medical attention.
Anyway, back to my diagnosis. The Doctor told me that I’d won the auto-immune lottery and that I should immediately start taking Naproxene (in large, hospital doses) to control the inflammation when it occurred. The inflammation causes either floppiness or hardening of the cartilage, which would result in floppy elephant ears or cauliflower ear (just like a rugby player) or a saddle nose (like cocaine users can get), or more seriously a potentially collapsed trachea or damaged heart valve. Of course, I would rather not have any cosmetic issues to deal with and then clearly would prefer not to be intubated or to have a tracheotomy should the RP feel the need to attack my more material bits. So, I was pretty thrilled about the Naproxene.
The Doctor also suggested that I start a course of Methotrexate, which is an immunosuppressant. I asked about evidence that this course of action works and he couldn’t point to anything other than how it has a positive outcome for patients who have inflammatory disease, i.e. rheumatoid arthritis. So, not in any way shape or form proven for RP, but my Doctor said “it’s your best option”. With the lack of evidence of success for RP and also the potential side effects of the drug, as well as having to inject myself every week, Methotrexate wasn’t such a thrill, so I declined that particular drug for as long as I could. That duration turned out to be 5 months.