Pemphigus Vulgaris: What treatment helps you?

Welcome, @raypauls1. I'm tagging other members like @darden708 @cicimee2 @darden708 @glongdmd @barbarajesse to join this discussion about pemphigus vulgaris and treatment. They can share their experiences and what has helped them.

Many people with pemphigus get better, especially if treatment is started early. But it may take years and can require taking medicine for a long time.

Raypauls, is this a new diagnosis for you? What treatment has been recommended?

I have bullous pemphigoid and muscus membrane pemphigoid. My skin is doing good at the present time. For my mouth, I had a tray made for my upper and lower gums. I use Clobetasol Propuonate gel. My mouth is a lot better. My gums are also improving. Good Doctors really help.

Hi raypauls1 and anyone else dealing with Pemphigus Vulgaris. I was 49 and it started with a few bloody nose episodes. I went to an Ent who cauterized the spot and I felt okay. A few weeks later I was on vacation in Spain when sores appeared in my mouth. It was very difficult to eat especially hot or crunchy food. I suffered through the vacation and on arrival home, I went back to the Ent with my sore mouth. Ent knew I had Pemphigus Vulgaris and immediately took a biopsy and sent it off to Yale University. To my surprise, I needed to see a dermatologist and made an appointment with a well known doctor who treated this immune disorder. Anyone finding out they have an immune disorder is life changing when you are told there is no cure. I was put on 60 mgs of prednisone once a day which didn’t work. Then I was put on 100 mgs and my heart was pounding out of my chest. I personally lowered my dose back to 60 mgs as I felt hopeless and had to hold down a job at the same time. IVIG had just been discovered and my doctor arranged for me to receive this treatment at NYU Langone Hospital for 5 days in a row. It didn’t make a difference. I decided to change doctors and went to Yale University, My new dermatologist prescribed Imuran and I lost a significant amount of my hair with no change. He then put me on Cyclosporin and that didn’t work either. Prednisone was lowered to 20 mgs and this new doctor scheduled me for IVIG once a month for 3 days. The sores improved in my mouth but never gone completely. I had sores in my esophagus and luckily, never on my skin. I did this treatment, all the while decreasing prednisone down to 5 mgs for 3 1/2 years. I left the Yale doctor and finally had a dermatologist suggest I try the monoclonal antibody infusion called Rituxan. Before I agreed to this treatment, I went to Johns Hopkins in Baltimore to see the doctor who was using Rituxan on his Pemphigus Vulgaris patients. . He was very positive I would have no side effects and that it would work for me. I went back to my home in Connecticut and my dermatologist set up the Rituxan infusions, once a week for 4 weeks. By second week, my mouth sores were healing and by the end of my fourth week they were gone. 6 months later, I had the infusions one last time while weaning off of prednisone. That was May 2005 and I have been in remission since November 2004. I am telling you my story to give you hope and determination to cope with and get yourself into remission. I went through 3 dermatologists until I found the doctor who had faith in Rituxan working for me. Good luck and hope my story helps you. If you have any questions, please let me know.

Welcome, @raypauls1. I'm tagging other members like @darden708 @cicimee2 @darden708 @glongdmd @barbarajesse to join this discussion about pemphigus vulgaris and treatment. They can share their experiences and what has helped them.

Many people with pemphigus get better, especially if treatment is started early. But it may take years and can require taking medicine for a long time.

Raypauls, is this a new diagnosis for you? What treatment has been recommended?

Hi raypauls1 and anyone else dealing with Pemphigus Vulgaris. I was 49 and it started with a few bloody nose episodes. I went to an Ent who cauterized the spot and I felt okay. A few weeks later I was on vacation in Spain when sores appeared in my mouth. It was very difficult to eat especially hot or crunchy food. I suffered through the vacation and on arrival home, I went back to the Ent with my sore mouth. Ent knew I had Pemphigus Vulgaris and immediately took a biopsy and sent it off to Yale University. To my surprise, I needed to see a dermatologist and made an appointment with a well known doctor who treated this immune disorder. Anyone finding out they have an immune disorder is life changing when you are told there is no cure. I was put on 60 mgs of prednisone once a day which didn’t work. Then I was put on 100 mgs and my heart was pounding out of my chest. I personally lowered my dose back to 60 mgs as I felt hopeless and had to hold down a job at the same time. IVIG had just been discovered and my doctor arranged for me to receive this treatment at NYU Langone Hospital for 5 days in a row. It didn’t make a difference. I decided to change doctors and went to Yale University, My new dermatologist prescribed Imuran and I lost a significant amount of my hair with no change. He then put me on Cyclosporin and that didn’t work either. Prednisone was lowered to 20 mgs and this new doctor scheduled me for IVIG once a month for 3 days. The sores improved in my mouth but never gone completely. I had sores in my esophagus and luckily, never on my skin. I did this treatment, all the while decreasing prednisone down to 5 mgs for 3 1/2 years. I left the Yale doctor and finally had a dermatologist suggest I try the monoclonal antibody infusion called Rituxan. Before I agreed to this treatment, I went to Johns Hopkins in Baltimore to see the doctor who was using Rituxan on his Pemphigus Vulgaris patients. . He was very positive I would have no side effects and that it would work for me. I went back to my home in Connecticut and my dermatologist set up the Rituxan infusions, once a week for 4 weeks. By second week, my mouth sores were healing and by the end of my fourth week they were gone. 6 months later, I had the infusions one last time while weaning off of prednisone. That was May 2005 and I have been in remission since November 2004. I am telling you my story to give you hope and determination to cope with and get yourself into remission. I went through 3 dermatologists until I found the doctor who had faith in Rituxan working for me. Good luck and hope my story helps you. If you have any questions, please let me know.