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Do you suffer from severe limitations in your dai- ly activities because of your disease? Then you are among the 11% who are able to minimally per- form regular, daily routines. And if you suffer from any limitations in your daily activities as a result of your medication or treatment, you are among the 68% who said they have mild, moderate, or severe limitations. We know because over 700 people told us so! The IPPF Registry (www.pemphigus.org/registry) provides us with a patient’s diagnostic and treat- ment experience information. With more data, the IPPF will be in an influential  position with policy makers and insurance providers. During the 2012 Annual Meeting, IPPF President Dr. David Sirois said, “The thing that empowers an organization is information.” This simple statement captures the IPPF’s goal of advocacy and awareness: providing information to clinicians, researchers, and insurance providers to make more informed de- cisions with regards to pemphigus and pemphigoid patients. Dr. Sirois challenged attendees to join the Regis- try. Now, I am asking you to do the same: JOIN THE REGISTRY. We need your help. “That registry is vital to our organization’s posi- tion, and our next step is to publish these findings in peer-reviewed journals, such as the Journal of In- vestigative Dermatology.” Once we do that, other scientists, researchers, and clinicians can use this important data so we can change perceptions and practice to benefit patients everywhere. Yet we have not reached our magic number of 1,000. We have 721 — out of thousands of patients around the world — who stood up and said, “I want to make a difference!” YOU can change how pemphigus and pemphigoid patients are diagnosed and treated in just 15 min- utes. Remember, your personal information is NEV- ER shared with anyone for any reason. The information we have is great, but without more involvement from pemphigoid patients, IVIg users, and men in general, we are only seeing part of the picture that could change everything.

Here are some Fast Facts from the Registry:

• 73% of all P/P patients are female

• 65% of all P/P patients have PV (11% have BP) • 11% also have thyroid disease (5% have rheu- matoid arthritis)

• 70% see only a dermatologist — even though 41% have current lesions in their throat/mouth.

As you can see, the information is compelling, but if this does not reflect you, then we need your data! The data can be segmented by gender, age, and disease type (see A Look at PV from Inside the Regis- try on the previous page). The goal of 1,000 will make our Registry the largest collection of pemphigus and pemphigoid data available to researchers. Please do your part to help patients everywhere. For more information, or to participate, please visit www.pemphgius.org/registry.

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Will Zrnchik, IPPF CEO, along with former board member Dr. Sahana Vyas, kicked off the weekend late Friday afternoon. Will provided an overview of the weekend to come and emphasized the importance of community participation in the IPPF. Volunteerism, fundraising, and participation in programs are all ways everyone can show support.

Dr. Animesh Sinha (University of Buffalo) began with his session on pemphigus. He discussed the clinical features of the disease, and how the specific antibodies that attack the glue in your skin cells are formed, as well as what it looks like when the cells come unglued under a microscope. Dr. Sinha talked about the genetic markers for pemphigus and how the incidences are seen more often in certain groups of people than others. He gave newly diagnosed patients a really good picture of what it looks like to live with the disease. In closing, Dr. Sinha encouraged patients and their relatives to donate blood to further his research on the causes of pemphigus and to create better treatments.

Dr. Amit Shah (University of Buffalo) presented on the IPPF Registry and what the data tells us. Pemphigus and pemphigoid are rare diseases so having a registry helps promote better understanding of the diseases around the world. A primary goal of the study is to investigate different characteristics of patients enrolled. The registry shows gender prevalence, average age, and racial/genetic breakdowns are. The registry data tells us more women diagnosed, and the average age of onset is 40-60 years. The data indicates women have mucosal activity more than men, while men are more prone to skin lesions. These findings will help researchers and physicians expand their knowledge of the disease.

Dr. Razzaque Ahmed (Boston Blistering Disease Clinic) rounded out the evening with an overview of pemphigoid. He explained how pemphigoid was different from pemphigus by location and look of the blisters. He said mucous membrane pemphigoid (MMP) and cicatricial pemphigoid (CP) typically affect middle-aged (and older) individuals. He explained the differences between bullous pemphigoid (BP) & MMP stating with ocular MMP the trachea can also be affected. Dr. Ahmed emphasized that early diagnosis and treatment is essential, especially with MMP (individuals can lose their sight or breathing capacity due to scarring).

Sahana and Will opened Saturday’s session with a warm welcome and were followed by IPPF Board President, Dr. Badri Rengarajan. Badri began with the importance of the IPPF to people with P/P – newly diagnosed, in a flare, in remission, and everywhere in between. He told the audience the Foundation makes all its resources available to patients, caregivers, family members, and medical professionals free of charge. Knowing this, it is equally important for the Foundation going forward to continue to help others for years to come. Badri mentioned four ways the Foundation helps patients: improving quality of life; reducing diagnostic time; understanding and coping with flares; and supporting new diagnostic methods and research. The asked the audience to reach out to the Foundation when they need help and to support the Foundation to increase our services.

Dr. Sergei Grando (University of California – Irvine) discussed prednisone (what corticosteroids are commonly known as) and how steroids work. He mentioned side effects of steroids and affects on patients. He suggested the treatment process should be a team effort. Dr. Grando also spoke on adjuvant drugs (to reduce steroid doses) and the use of IVIg and an immunosuppressive to reduce disease activity.

Dr. Razzaque Ahmed returned to the stage for a talk on treatment side effects. He commented on how extreme cases of P/P can end up in burn units — not an appropriate treatment. Dr. Ahmed suggested a patient’s treating physicians should be told what drugs are being taken so treatment for additional problems is carefully coordinated. He talked about prednisone side effects and the importance of keeping track of them to share with your physician. He discussed side effects of immunosuppressives (such as Imuran®, CellCept®, and Cytoxan® and their link to cancer), IVIG, Rituxan®, and other treatments. At the end, Dr. Ahmed emphasized open communication with all a patient’s physicians to ensure the best possible care.

Did you know 13 million liters of plasma are collected each year, and the antibodies extracted from this plasma is what makes IVIG? Dr. Michael Rigas (KabaFusion) explained this, and more in his talk. He told the audience how the drug is made, where it comes from, and why it costs what it does. Dr. Rigas then explained how it is administered to a patient, and what patients should expect after the infusion. He said IVIG as a P/P treatment is not approved by the United States FDA. He closed by saying there are many factors to be considered before a patient gets IVIG and to talk with your doctor if you have questions.

Dr. Grant Anhalt (Johns Hopkins University) presented on the physiology of PV. He explained how and why the cells detach from one another. He said many currently-prescribed anti-inflammatory drugs do nothing to inhibit antibody production. He provided a recap of Imuran®, CellCept®, IVIG, and rituximab and how they work on P/P. He has found rituximab has been very successful in the treatment of PV without the side effects commonly found in cancer drugs. Dr. Anhalt described how rituximab destroys maturing B-cells for 6-9 months and how results of several studies showed the success of rituximab in early stages of PV.

Victoria Carlan (IPPF Board member and founder of the Canadian Pemphigus & Pemphigoid Foundation) talked about personal support networks. She opened with her personal PV journey explaining the importance of her support network, and how she used it to live successfully with P/P. This enabled her to find answers and find encouragement. She explained how support networks can build-up physical, mental and emotional strengths.

IPPF Awareness Program Manager Kate Frantz talked about the IPPF’s Awareness Campaign. Building awareness in the medical community is important to reducing diagnostic time for patients. She said we can all help with awareness in our won ways. One way is becoming an Awareness Ambassador in your community. Awareness Ambassadors will go into their community to spread P/P awareness. Others ca write to newspapers, speak at professional gatherings, and engage others in your community. She stressed the importance of spreading awareness through social media to help create a “brand” others can relate to the IPPF and P/P.

One of the IPPF Awareness Campaign’s Patient Educators, Rebecca Strong, discussed additional ways to spread awareness. People can write to their federal, state, and local representatives encouraging them to be involved with improving your health and supporting legislation that benefits all of us. Be your own advocate and ask those you know who might be able to help advocate for you. There really truth to the Power of One.

Dr. Firdaus Dhabhar (Stanford University) presented on stress & autoimmunity. Dr. Dhabhar discussed the biological responses that happen with stress are not always negative, but can be positive. Short-term, acute stresses (such as surgery, vaccinations, etc.) can enhance positive immune response. However, chronic, long-term stresses have negative effects on the body. With long-term stresses, the goal is to minimize their effects with better sleep, nutrition, exercise, calming activities, or whatever works for you.

On Sunday, the patients took center stage for a patient panel discussion. Our panelists included IPPF Senior Peer Health Coach Marc Yale (MMP/OCP), Becky Strong (PV), Peer Health Coach Mei Ling Moore (PV), IPPF Board member Rebecca Oling (PV), and Janet Segall (PV). Questions covered personal best practices, dealing with side effects, and product recommendations.

This successful segment was followed up with a 90-minute teleconference in May 2014 where over 80 people registered with 40 people on the call at any given time.

Following the patient panel, the IPPF hosted several workshops. These smaller, focused sessions were on topics such as different stress reduction methods, diet and nutrition, oral care, ocular concerns, IVIG, and reimbursement issues. There was also a successful focus group centered on the Awareness Campaign.

Once the workshops concluded, attendees gathered back in the main room for a Q&A with some of the weekend’s speakers. Questions were asked, debated, and answered by experts from different specialties.

Will and Badri reminded everyone we all can be involved in making sure newly diagnosed patients get the help they need by participating in IPPF programs and donating to our cause. And during his closing remarks, Will announced the 2015 Patient Conference will be in New York, and information will flow as it is available.

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Rituximab has been reported to be effective in various small case series of patients with severe and/or refractory pemphigus. However, no systematic evaluation is available to corroborate this observation. The aim of this study was to systematically determine efficacy and safety of rituximab in treatment-resistant pemphigus.

Patients and Methods: Multicenter retrospective, observational study of 36 patients with severe pemphigus vulgaris (n = 33) and pemphigus foliaceus (n = 3) treated with rituximab before August 31st, 2008 and enrolled in a national observational registery between December 2008 and June 2009.

Results: Within a mean period of observation of 11 (1–37) months, 21 (58 %) pemphigus patients showed complete, 13 (36 %) partial, and 2 (6 %) no response to rituximab treatment. This correlates with a mean improvement of the visual analog scale for well-being of 34 (20–60) at baseline to 75 (40–95) at the last control visit. In 4 (11 %) patients, severe adverse events were recorded including 1 (3 %) serious infection.

Conclusions: Data collected in this systematic registry indicate that rituximab is an effective and relatively safe adjuvant treatment option for refractory pemphigus. To further extend our knowledge on efficacy and safety of this drug, controlled prospective trials are required.

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from MedWorm Query: Pemphigoid