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Sunday, September 12, 2010

Update from Marilyn - Addition of Prednisone

Hi, this is Marilyn updating:

I started 30mg/day prednisone this past Tuesday, and this morning for the first time I think I am seeing a bit of improvement.

One thing I have noticed is that I have had no "new" outbreaks of erosions for a while. The ones I have are so painful that I forgot to pay attention to the fact that there have been no "new" eroded areas.

I plan on dropping down to 25mg/da of prednisone beginning this coming Tuesday, then waiting 2-3 weeks to go down to 20mg, etc. My NP and I decided I really need a very long tapering off the pred this time in order to let the Cellcept get a good grip. I don't mind being on a low dose of pred as a maintenance if necessary, just to get controlled.

I realize the biggest mistake made was by the dermatologist I was seeing last Spring when I came off the pred completely and the rebound had started. She should have stepped in immediately to address the rebound before it got so out of control and my auto immune system went on such a rampage. I am going to pay the price for that lack of intervention for the rest of my life. 

The past 6 months of chronic erosion(s) has left permanent damage to my left side cheek area, and there is no doubt I will have significant scar tissue. I need some dental work, too...mostly an intense prophylaxis and my perio pockets checked and cleaned out. Fortunately, I've never had periodontal problems, but this last 6 months of very poor dental hygiene may cause some. Hopefully, no decay has started anywhere, either.

I sympathize with Elizabeth on the wisdom teeth. I still have all 4 of mine. They are all in a difficult position to extract, and all of them are deeply embedded in heavy bone. Removing them would be a nightmare for both the oral surgeon and me, not to mention healing and possibly initializing another horrible OLP flare up.

I am concerned about my ability to open my mouth, however. I am assuming that when more of the erosions, swelling and inflammation goes away, I'll be able to at least get my mouth open enough to eat normally. When I try and open to a more normal width right now, I feel pain and "pulling" on that tissue. I know I'll always have to cut most of my food into small pieces, but I don't want to live on soup and ice cream for the rest of my life!

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