Initially my dentist consulted with my dermatologist, Dr. Daniel Sauder at Sunnybrook Health Science Centre in Toronto. My dentist suggested that I get my teeth cleaned twice a year and take a mouthwash called "Peridex" to prevent infection. This had no impact. From my participation in the pemphigus newsgroup, I learned that other people had similar problems.

Some people suggested that I purchase a topical steroid and apply it with my finger to the affected areas. I consulted my dermatologist, received a prescription and began to follow this routine. This also produced minimal results.

About a year ago I lost one of my fillings. This caused me to go to another dentist, Dr. Paul Belzycki who is a periodontist and does restorative surgery. He took one look in my mouth and was horrified. He had never treated a pemphigus patient, but he knew that I had a major problem that, if left untreated, could result in infection and the possible the loss of my teeth.

He then consulted with my dermatologist, and with Dr. Jim Main, his former Professor of Dentistry at the University of Toronto, and one of Toronto's leading specialists. Together they came up with the idea of preparing a set of trays. These are plastic moulds that fit snugly over my gums and teeth. This would allow me to apply the topical steroid to the affected areas and then place the trays over the gums so that it would keep the topical steroid in place.

This worked reasonably well and I saw some significant improvement. Once my gums began to look better, I stopped the treatment. The result: Within a couple of weeks, my eroding gums were back.

At this point I asked Dr. Belzycki to consult with Dr. Dominik Ettlin, who is an Assistant Professor, and Director, Division of Oral Medicine/Oral Diagnosis at Northwestern University, and who has considerable knowledge in treating pemphigus patients. I met Dr. Ettlin at the first national conference of the Pemphigus Foundation in Chicago in August. From this conference call I learned the following:

First, to be truly effective, I must dry the affected areas with a tissue before applying the topical steroid. Second, I must follow a consistent pattern during and after my treatment. I must use the trays three times a day, seven days a week. Once the skin tissue on my gums has returned to more normal levels, I can then revert to using the trays three times a day, three days a week. In other words, I must continue this procedure indefinitely and consistently, or risk a relapse. I am now, finally, seeing a significant improvement. While I have a way to go before my gums look the way they did prior to the onset of PV, I am very happy with the progress I am making.

Here are a few other tips I have picked up along the way. Make sure the trays fit very snugly. If they don't come out properly the first time, have them done again. Since my gums have been so fragile, brushing my teeth has been an adventure. To keep your teeth and gums in good shape, use an extra soft toothbrush and use "dental yarn" instead of dental floss. It's much more gentle.

Also, have your teeth cleaned every six to eight weeks. This will prevent the buildup of tartar along the gumline and reduce the chances of infection. It also allows the skin tissue at the gumline to affix itself to your teeth. Ultravate works better than Kenalog in Orabase to treat this type of problem.

The rehabilitation of my gums is still a work in progress. It has been a constant learning experience, with input from four dentists, my dermatologist, and many people on the online pemphigus newsgroup, who have been kind enough to share their experiences with me and the group. I gratefully acknowledge those who have helped me come up this learning curve and have put me on the road to recovery.

Note: As always, check with your medical practitioners before making changes to your health regimen.