Category Archives: Issue 75 – Winter 2012

To Anna, the IPPF means hope when all hope was gone. For Steve, the IPPF means discovering hundreds of other patients when he thought he was alone. And Jack — Jack says he owes the IPPF his life. To me, the IPPF means helping my ‘pem-family’ find comfort, strength, and support through our dedicated staff and volunteers. Phone calls and emails come in to our offices every day. Between the new patient calls and flare-up questions, there are little rays of sunshine that bring hope. Thousands of people around the world re- member their first call, how the IPPF was there for them, and what the IPPF means to them. Now it’s your turn. Please contribute to the IPPF this Holiday Season. Your donation funds essential, life-saving programs and services such as the Regis- try, Peer Health Coaches, Awareness, and more. And now you can be a Sustaining Donor! Our organization is lean, so a higher percent- age of your money goes directly to the programs we offer and the re- search initiatives we sponsor. You can safely donate online at or use the form below. As I look back over the past year, I remember how many members of my pem-family I have talked with and helped with the gift of hope. I know for our Peer Health Coaches that number is even higher. This holiday season give the gift of knowledge, support… and hope. Happy Holidays and Happy New Year!
A diagnosis of pemphigus or pemphigoid typically means some sort of systemic medication. Many doc- tors 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 start- ing to become very popular in the ar- ea. I was having difficulty handling prednisone so I started augmenting my healing with Chinese medicine, Bio- feedback, Linseed oil, and soybeans. I tried tea that tasted and smelled horri- ble (my roommates were not too hap- py about that). I drank a tablespoon of Linseed oil every day, and cooked raw soybeans that I made into soybean pat- ties 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 im- mune system and can negate the ef- fects of immunosuppressive drugs being used to get disease activity under control. Typically a person uses alter- native medicines and diet to try and stabilize the immune system. My per- sonal 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 mak- ing 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 gar- lic. Mediterranean countries tend to eat a lot of onions and garlic, so deter- mining 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 no- ticed I had a couple of new lesions. I stopped eat- ing the garlic and two days later the lesions disap- peared. 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, sour- dough bread. I discovered testing foods myself less- ened 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 bio- feedback and Transcendental Meditation. Before I was diagnosed with PV, I went to the Transcenden- tal 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 cer- tified 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 Direc- tors 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 ma- ny different methods of stress reduction so finding one that fits into your life is a key to effective heal- ing 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 yo- ga, 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.