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Wednesday, September 22, 2010

Seeing Some Improvement

An Update from our guest, Marilyn:

Over the past 2-3 days, I have started to see some improvement in my oral tissue. The more recent ulcerations look like they are beginning to heal a bit, and I have not had any new outbreak of ulcerations for a good while.

Where the ulcerations on the inside of my cheek are healing, they are being replaced by that whitish film that is so indicative of lichen planus, and then sometimes there is an "erosion," not an "ulceration" underneath.

My tongue has been involved more so than before. I have erosions on the top, tip and under on the left side. I find that the "sore" tongue is even more annoying than the inner cheek tissue because the whole tongue muscle is so very painful to move. It makes you not even want to open your mouth for any reason.

Some places along the inner cheek and inside the upper and lower lips are just looking like normal pink oral tissue, and I am so grateful to see that!

I am taking 30mg of prednisone daily along with the Cellcept, and it is obviously the pred that has made the healing process begin. I am going to start to taper down on the pred this next week, maybe on Thursday or Friday, and see if I can still control the healing without the higher dose.

This time, I plan to reduce the prednisone more slowly than before, going down by 2.5mg at a time over weeks and weeks. I think because of the horrible prednisone rebound that caused me to get to this place, I need to taper off over the next 6 months as opposed to 2-3 months. As soon as I see the "rebound" coming back, then I know I need to be on the previous higher dose of pred to control the outbreak. Bad thing is that the pred has so many undesirable side effects that you kind of trade in one problem for potentially another.

The swelling inside my mouth has gone down a bit, however, there is still quite a bit of inflammation, which the prednisone should help. I notice that my need for anesthetic (Viscous Lidocaine) is diminishing slightly.

I have started taking Aleve to control some of the pain systemically. The Aleve works so much better than oxycodone for oral/facial pain. I take it more often than recommended in order to keep the pain cycle from spiking.

I can see that this process will take a while to even remotely become managable, but I feel I may have started climbing out of the deep hole and not descending farther into it. But if it eventually works in conjunction with a reasonably low dose of prednisone, it will have been worth it.

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