Peer Coach Spotlight: Scott Taub

Our Peer Coach Spotlight section features one of our IPPF Peer Coaches, volunteers who have learned to manage living with pemphigus and pemphigoid (P/P). Peer Coaches share their tips and tricks, as well as IPPF resources and educational materials that help people affected by P/P to have meaningful discussions with their healthcare teams. Learn more at pemphigus.org/peercoaches. This issue, we asked Scott Taub to share more about himself.

Scott Taub became an IPPF Peer Coach in 2020. He was diagnosed with pemphigus vulgaris in 2013 by the eleventh doctor he saw after his symptoms started. Scott achieved remission in late 2016 with prednisone and azathioprine and has maintained remission without any systemic medications since 2017. Scott is an accounting and financial reporting consultant, helping large companies deal with complex transactions and accounting standards. He has been able to continue having a successful career while dealing with PV. He lives in the Chicago area with his wife and two sons.

How did you become involved with the IPPF?

When I was finally diagnosed after three months of suffering from painful lesions in my mouth that made it difficult to eat or sleep, I looked for ways to find out more about PV. I found a Facebook group for those dealing with PV and saw postings from the IPPF, including announcements about the upcoming annual Patient Education Conference, which happened to be close to my home. I learned more from the conference than I had learned from my doctors or any other sources. I decided to help others with PV by discussing my experiences and answering questions in the Facebook group. I was glad to be offered the opportunity to continue helping others suffering with P/P as a Peer Coach.

What is something that community members with P/P can do to better advocate for themselves?

Don’t be scared to ask your provider questions and engage with them in conversations about questions or concerns regarding the disease and your treatment. Utilize the IPPF resources, including the IPPF Guide to Pemphigus and Pemphigoid (pemphigus.org/patient-resources/) and archive of Patient Education Series webinars (pemphigus.org/patient-education-webinars/). You can then bring up things you learned about with your provider. They are there to help you, and you shouldn’t feel like you need to wait for them to bring something up.

Which treatment(s) did you take in your rare disease journey?

I started with prednisone, as most of us do, and it gave me a lot of relief somewhat quickly. I also used a dexamethasone mouthwash to help and took doxycycline for a while. Of course, I quickly started looking for something that would allow me to get off prednisone, and the first drug I tried was mycophenolate (Cellcept®). After about one year, my doctor and I decided that wasn’t working, so I switched to azathioprine (Imuran). I made steady improvement on azathioprine and prednisone and went into remission. I then very slowly tapered off prednisone, and eventually dropped azathioprine as well. I’ve been in remission for over seven years and off all medications for over six years.

What is something fun or interesting about yourself?

I work as a financial accounting expert, have served on many national and international accounting working groups, and am the author of two very long accounting books.