Vickinyc

Close Pemphigus

I was diagnosed shortly after 9/11. Blisters in mouth, scalp, everywhere but face. It took time to balance meds but I've been stable for 5 years on combination of low dose Prednisone and 1000 mg Cellcept. I worked with ENT to solve mouth sores: numbing with lidocaine and injection into sores with Kenalog solution. Clears sores in matter of days. I write Patient Education materials for pharmaceuticals.

Treatments

Prednisone Working / Worked

In addition to fast and alarming weight gain (90 lbs/5 months) the worst side effects at 80 mgs were sleeplessness and jitters. I now take only 5 mgs per day. During the weaning process, Dapsone was substituted. Unfortunately, I had a very severe allergic reaction to Dapsone and needed to stay on Prednisone.

Cellcept Working / Worked

I began on 4000 mgs per day. Today I take only 1000 mgs per day. At first I developed fuzzy facial hair like a preemie has. This disappeared. The most lingering effect is a distended abdomen. I routinely have blood work every 6 months and take calcium supplements folic acid and Valtrex for shingles which developed about the same time as the Pemphigus.