Category Archives: Issue 53 – Summer 2008

A research team, led by Janet Fairley, M.D., at the University of Iowa, is investigating the role of IgE-type antibodies in bullous pemphigoid. Most of the previous work in pemphigoid has focused on IgG antibodies and while the presence of IgE in pemphigoid has been known for many years, Fairley and her group have recently shown that the IgE antibodies contribute to lesion formation in pemphigoid.

Dr. Janet FairleyBased on these finding, the group has initiated a trial studying the safety and effectiveness of omalizumab (Xolair), an anti-IgE medication, in bullous pemphigoid. Omalizumab is currently approved for the treatment of asthma and the hope is that in pemphigoid it will minimize or eliminate the need for steroids

This trial is truly translational research that aims to bring findings from the laboratory into the clinical setting in order to improve patient care. The pilot trial will compare the use of omalizumab to standard prednisone treatment in 12 patients and will last for 24 weeks. Carrying out the trial at the University of Iowa will be greatly facilitated by the fact that Iowa is one of 24 institutions in the nation recently awarded a $33.8M Clinical and Translational Science Award (CTSA). These awards are designed to help researchers bring new diagnostic methods and treatments to patients by assisting in the design, execution and data analysis of research studies. Genentech will be providing the medication for patients in the trial.

Patients are still being recruited for the study and may contact Deb Brandt at 319-353-6439 or debra-brandt@uiowa.edu. The IPPF encourages you to support this important clinical trial work.

When it comes to action, this group definitely puts the pedal to the metal… I am so grateful to all of you that offered me input about Dr. Grant Anhalt, getting around the Baltimore area, lodging suggestions, and most of all encouragement. When I was flying the friendly skies, all of you were with me. I could feel your love, support and cheering me on as I approached the city of Baltimore. It’s difficult enough finding a local doctor, giving him your trust and praying that his treatment will be successful. Traveling 1500 miles away is a totally different story. Hopefully,

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this story will have a happy ending. I was very impressed with Dr. Anhalt, his staff and the Johns Hopkin’s facility in Baltimore, Maryland. His knowledge, enthusiasm, and willingness to move on to Plan B made the trip all that I had hoped it would be. I am now on Cellcept and awaiting my first infusion of Rituxan on June 6th in my home town of Lake Charles, Louisiana. Dr. Anhalt is always willing to share his expertise with other physicians and responds to email in a timely manner. My local rheumatologist will be consulting with Dr. Anhalt, so I feel confident in the new treatment plan. I want to once again thank all of you for being in my corner. Our group definitely pays it forward. From welcoming new members, to answering the craziest of questions, to responding to someone in need, you are the very best.

The PEM Friends 2008 away weekend here in sunny Ashton-under-Lyne, Gtr. Manchester, will take place over three days and two nights, June 27th-29th, 2008. Happily, Janet Segall, founder of the International Pemphigus & Pemphigoid Foundation in America, is expecting to come over from California to join us.

Dave from America is also going to be with us this year. On Saturday evening, there will be a gala dinner in our house – fancy gowns ladies and smart casual for the men. There will be a whole dressed salmon delivered, vegetarians will be catered for, wine and non-alcholic drinks provided. For more information contact Carolyn at carolynblain77@hotmail.com.

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Our shining star, Carolyn Blain came to Providence, Rhode Island for Thanksgiving this past year to take part in a family event. This happy circumstance became the occasion to get together with some of our community in Rhode Island and Massachusetts to sit down for a lively lunch. So on November 24, 2007, the Saturday following the big feast day, a few of us gathered at the ZBar on Wickenden Street in Providence for yet more wonderful food, and we had the place almost all to ourselves. We took full advantage of that to make ourselves right at home. Carolyn brought many requested items from England, and even a marvelous gift or two.

Once again, I am reminded that the International Pemphigus & Pemphigoid Foundation has had many terrific outcomes. One in particular is the almost immediate links of friendship.

Around our table were, Linda and Merv McKee, Gloria and Alan Papert, Carolyn Blain, Dieter and Yvette Nachmias-Baeu, and Ellen Levine.

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