Category Archives: Issue 75 – Winter 2012

A diagnosis of pemphigus or pemphigoid typically means some sort of systemic medication. Many doctors start a patient off with prednisone for the first couple of weeks, and then add another drug to help reduce the dose of prednisone. When I was diagnosed some 30 years ago, prednisone was the only drug being used. Imuran had just started appearing on the scene. My doctor didn’t know if it was an option, so we tried methotrexate; and that caused too many problems.
Being diagnosed with PV at 37 was not something I handled very well. It took time.
A lot of it.
I was living in Berkeley, California, and alternative medicine was starting to become very popular in the area. I was having difficulty handling prednisone so I started augmenting my healing with Chinese medicine, Biofeedback, Linseed oil, and soybeans. I tried tea that tasted and smelled horrible (my roommates were not too happy about that). I drank a tablespoon of Linseed oil every day, and cooked raw soybeans that I made into soybean patties and ate twice a day. I don’t know scientifically if any of the things I did back then worked, but they helped me live better with prednisone. Along the way, I learned some incredibly helpful relaxation techniques I still use to this day.
After many years living and learning as much as I could about the diseases, I know it is important for someone with pemphigus or pemphigoid to avoid things that might enhance the immune system, such as alternative medicines, vitamins, or foods rich in spirulina and echinacea. These boost your immune system and can negate the effects of immunosuppressive drugs being used to get disease activity under control. Typically a person uses alternative medicines and diet to try and stabilize the immune system. My personal advice is that if you decide to try Chinese medicine, make sure none of the ingredients will harm you in some way. A specialist should know the right combinations to use but always discuss this with your physician BEFORE making any changes to your diet.
Dr. Sarah Brenner (Israel) conducted small studies several years ago on certain foods and how they affect pemphigus and pemphigoid patients. Even though they were not double-blind studies and were very small in size, she was able to theorize that foods from the Alum group might cause problems for people with pemphigus. These foods included onions and garlic. Mediterranean countries tend to eat a lot of onions and garlic, so determining if they pose a problem for you might be challenging.
I am very fond of both onions and garlic so I decided I would test myself. At the time I was clear of lesions but still on drug therapy. For three days, I ate two small cloves of garlic a day on “rice cake pizzas”. Three days later I noticed I had a couple of new lesions. I stopped eating the garlic and two days later the lesions disappeared. I waited several weeks (enough time for the garlic to leave my system) and I tried it again. The same thing happened, as well as a third time.
I came to the personal conclusion that eating a large amount of garlic consistently was not a good idea for me. I found the same thing happened with large amounts of onions and, believe it or not, sourdough bread. I discovered testing foods myself lessened my overall disease activity and allowed me to identify what foods and approximate what amounts were going to result in lesions.
One of the most helpful things I tried was biofeedback and Transcendental Meditation. Before I was diagnosed with PV, I went to the Transcendental Meditation Center in San Francisco and learned some methods for relaxation. Biofeedback showed I was able to significantly reduce my stress quotient. Because of that early success, I recently became certified in Hypnotherapy. Now, I use hypnotherapy on myself and to help others reduce stress.
There isn’t any disagreement that stress reduction is an important part of healing from disease — not just pemphigus and pemphigoid, but any disease. Dr. Terry Wolinsky McDonald (IPPF Board of Directors and a regular Quarterly columnist) has written many articles on coping with stress. I strongly agree with her that it isn’t about the stress itself as much as it is the way we deal with the stress. There are many different methods of stress reduction so finding one that fits into your life is a key to effective healing and coping.
Sometimes being proactive with disease can be difficult. Once the medicine starts to work, many people want to pretend nothing was wrong in the first place. Some simply take their medicine, eat whatever they want, and avoid physical activity. I’m guilty! We just pretend we’re fine hoping a positive attitude will be enough. Having a positive attitude is extremely important, but pretending we don’t have to take care of ourselves can be hurtful. The drugs for these diseases can cause damage to our bodies and a proactive, positive attitude can help promote healing faster.
I have been in remission now for about 15 years, 10 drug-free. I watch my eating habits and notice any changes certain foods cause. Taking prednisone off and on for 10 years has had a negative effect on my spine and joints, but I find ways to exercise: mild yoga, walking, hot pool aerobics, and stretching — and last but not least — relaxation.
I believe a comprehensive approach to healing not only helps us heal our disease, but can help us keep a positive attitude as well.
‘Tis the season for giving thanks and celebrating the holidays with those we love. Things  can become so hectic that we forget to thank those around us for being a part of our lives. Personally, I am thankful for my parents and their advice over the years. “Bird” and “Pops,” as they are affectionately referred to, were never short on tough love or supportive words. I thank my love- ly wife, Christina, for her loving support and encouragement that make me a better person. I am thankful for my children, Will, Haley, Alannah, and Noah, and hope each of them support causes dear to their heart. I thank Janet Segall for bringing me into the IPPF and our Board of Directors for giving me the opportunity to work with our won- derful coaches, advisors, and patients around the world. The un- derlying theme: I am thankful for the support of others and do my best to pay it forward. The IPPF does more than support patients — it supports caregiv- ers, family, friends, and physicians. Thank you to Marc Yale and our Peer Health Coaches who collectively have closed more than 500 cases this year answering calls, emails, and postings from people all over the world. Many of our “veteran” patients still remember that scared feeling they had before calling the IPPF and how relieved they felt after receiving support and information. They now pay it forward, helping others in our community. Recently, a newly diagnosed patient’s daughter called the office. You could hear the relief in her voice when I told her, “Your mom will be fine. Now let’s focus on helping you understand the disease and treatments.” After, she sent me an email thanking me for the in- formation, but more for just taking the time to talk to her. I replied: “No, thank you for calling.” Yes, thank you for the calls, emails, and interactions that allow us to support one another. You should feel good knowing your involve- ment helps others at a time when they need the IPPF most. From my family to yours, have a safe and joyous holiday and a Happy New Year! From the Top Will Zrnchik Chief Executive Officer PS: Help us continue our important work by donating today. Contribute online at or use the form on page 13. International Pemphigus & Pemphigoid Foundation2 POSTMASTER: Highway #100, Sacramento, CA 95833, United States of America. The Quarterly is published four times a year in the Spring, Summer, Fall and Winter and provided free of charge to donors as a thank you for their support. The material presented in our journal is not intended as medical advice. Readers are urged to consult their physicians before making any changes in their health regimen. The contents of the Quarterly cannot be reproduced or copied without written permission of the IPPF. All inquiries regarding material from this publication should be directed to: IPPF, Attn: Rights and Permissions, 1331 Garden Hwy #100, Sacramento CA 95833, USA. We are able to reproduce articles and provide electronic copies of issues. The cost for this service varies based on the amount and type of media preferred.  If you are interested in submitting a story for print consideration, please contact the IPPF prior to submitting your story. Our staff will assist you in preparing your article for future publishing in an issue that relates to your topic. BOARD OF DIRECTORS David A. Sirois, DMD, PhD Rebecca Oling, MLS Lee A. Heins William Gerstner Dan Goodwill Badri Rengarajan, MD Sonia Tramel Mindy Unger Terry Wolinsky McDonald, PhD J. Gregory Wright, MBA MEDICAL ADVISORY BOARD Victoria Werth, MD Sergei Grando, MD, PhD, DSci Russell P. Hall III, MD Takashi Hashimoto, MD Michael Hertl, MD Pascal Joly, MD Marcel Jonkman, MD, PhD Neil Korman, MD, PhD M. Peter Marinkovich, MD Dedee F. Murrell, MD Animesh A. Sinha, MD, PhD David Sirois, DMD, PhD Robert A. Swerlick, MD ADMINISTRATIVE STAFF AND SUPPORT William Zrnchik, MBA, MNM Kevin Cruz PEER HEALTH COACHES Marc Yale, Sharon Hickey Jack