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Holding Pattern

April 20, 2016

I had an appointment with my rheumatologist today and the short version is: nothing happened.  We agree that I had a rough winter and we both hope that things will continue to improve for me.  All is not rosy, though:

  1.  Because my medications suppress my immune system, I got sick a lot this winter  A Lot.  A LOT!  If this keeps up, we might have to adjust meds to somehow keep me healthier without letting the Relapsing Polychondritis win.  How we do this, however, is still a mystery to me.  Hopefully the doctor has some excellent ideas.
  2. I had a brutal Relapsing Polychondritis flare up after my trip to Japan.  That eventually calmed down, but I’ve been having mild flares most of the last 3 months.  We are hoping that was just the stress on my body of all of the winter illnesses.  If my Relapsing Polychondritis is running amok, though, we might have to change meds.  To what?  We do not know.  I know that my current drug won’t work forever, but I was hoping it would give me more than a year.  Please?  2015 was rather nice and I’d love to have another year as good as that one.
  3. Other parts of my body are falling apart, just a little bit.  I should visit another specialist or two to see if they can help alleviate pain and increase mobility.  This is actually a back-burner item and I’ll only address it once the bigger issues have been resolved.

For now, I am continuing on.  I am treating everyone I meet as a plague carrier and being ridiculous with my hand-washing.  I am trying to regain some of the strength and endurance I lost due to months of respiratory illnesses (ridiculously awful chest colds, bronchitis, etc.).

Putting one foot in front of the other…


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  1. Cyn permalink

    I hope you continue to get better and that the current meds will keep working. I was diagnosed with RP 2 weeks ago so I’m a newbie to all this and still stumbling around the reality of it. So far, I’ve had 3 flareups and the last 2 were treated with prednisone so I feel very lucky that I was diagnosed less than a year after the initial flare up (thank you Google) due to having a doctor who listens. If you don’t mind telling me, how long did you go before the flareups became serious and you had to advance to other meds?

    • I got sick all at once, so there was no progression for me. I hope in my writing you read that I still have a pretty great life. Don’t give up!

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