There is a natural ebb and flow to this disease.
I know this intellectually and I celebrate the ebbing.
Days with no fatigue.
No autoimmune issues.
No b-symptoms.
But then WHAM, the dragon hits again.
On the good days, I nearly forget that CLL is lurking.
The recent three weeks have been difficult with all the associated issues that a disregulated autoimmune system bring:
fatigue,
gastroenteritis,
migratory dermatitis,
persistent, painful mouth sores.
Tomorrow I see Dr. Bengston at Dartmouth Hitchcock Medical Center. Copies of the excel spread sheet that I use to document autoimmune and b-symptoms was mailed a week ago along with a list of questions for discussion at our meeting. I also proposed that we look at returning to the high dose immunosuppressants used last year for AIHA. One side benefit of that treatment was a knocking back of the autoimmune sequella for about about eight months.