Wednesday, November 26, 2008

Relapse or Systemic Lichen Planus?

I've been off the prednisone for nearly two weeks now. The symptoms are creeping back at an alarming rate. My mouth flared up the evening after my appointment. I attributed it to the poking and prodding that occurs during examination and photographing my mouth. I told myself it would calm down and be better in a day. It improved slightly, but since then I am having to apply clobetasol every day. Some people get a bit of a rest between flare ups. And I used to in the past. But, at this point it looks like I will not get a rest.

What I wonder is if there is such a thing as systemic Lichen Planus. I have been on steroids since the end of July and had some reasonably good health in general while my mouth was slowly healing. Through those months I was not as aware of the additional symptoms that disappeared as I am now that those symptoms have recurred.

My eyes are all inflamed. There are big black sunken circles under my eyes. I look unwell. I feel unwell. My throat hurts in the back making it difficult to swallow. There is swelling and pain under my right jaw. My allergies and asthma have returned (to be expected when coming off the prednisone). Surprising to me,though, the GERD has returned and bowel problems. My arthritis is flaring up again. Pain is tolerable, but walking is difficult. Fatigue is tremendous.

I was feeling so well for so long, I had almost forgotten what it was like to have this combination of symptoms to balance in my daily life. And here they are again!

I struggled to drive home from a day on the other side of the county. I was so exhausted, all I could do was lie down and stay there, not having the energy to get up for a glass of water for at least an hour. All these things make me wonder if LP is systemic. Or perhaps I have more than one auto-immune disease happening.

So, today I went back on Acidophilus and Aloe Vera to help my innards.

I called the Rheumatologist's office but it being the day before Thanksgiving, of course there was no answer. I left a message. I am supposed to get a prescription from her for Cellcept.

I couldn't call UCSF doctor to report to her what is happening. I will try her on Friday, in case she goes in on that day.

I am returning to low dose prednisone until I can get a chance to talk with either of them.

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