ANCA Vasculitis International Conference Updates 2017

By Anisha Dua, MD, MPH Assistant Professor of Medicine Program Director The University of Chicago Medicine, Rheumatology Research in ANCA vasculitis has gained significant momentum in the last decade with the discovery of new insights into disease mechanisms, targets for therapy, and it has resulted in better outcomes for patients. We have made great advances more »

Qualifying for Social Security Disability Benefits with Vasculitis

By Deanna Power Director of Outreach, Disability Benefits Help Email:  [email protected] Vasculitis comes in a variety of forms and severities.  While some people with the disorder experience mild, manageable symptoms, others with widespread or severe vasculitis may find it hard to work or complete daily tasks. If your vasculitis prevents you from working, then Social more »

Pregnancy Possible for Women with Vasculitis

As treatments for vasculitis have improved, more and more younger patients are healthy enough to have children. There is little guidance to either the doctor or the Mom-to-be on what happens during pregnancy in these women. Megan E. B. Clowse, MD, MPH from Duke University and colleagues from the University of Pennsylvania asked patients to more »

Trying to Understand Giant Cell Arteritis Relapse

  Giant cell arteritis (GCA) is a chronic condition with frequent relapses. A better understanding of why relapses occur might help identify patients who would benefit from longer treatment duration. Tanaz A. Kermani, MD, MS, Director of the Vasculitis Program at UCLA and others from the Vasculitis Clinical Research Consortium (VCRC) studied the frequency, timing, more »

Biomarkers Not Helpful in EGPA Treatment Decisions

Eosinophilic granulomatosis with polyangiitis (EGPA) is a disease that can be hard to manage. Certain blood tests (also known as biomarkers) have been used to follow disease activity and predict relapse. How well these markers actually work in patients hasn’t been rigorously tested. Paul A. Monach, MD, from the section of Rheumatology at the Boston more »

EGPA Management and Treatment Recommendations Issued

  Eosinophilic granulomatosis with polyangiitis (EGPA), also known as Churg-Strauss Syndrome, is a rare form of vasculitis affecting small-to-medium sized blood vessels. Although the number high-quality clinical trials have been increasing over the years, there remains a need for consensus recommendations to help with evaluation and management of the disease. To address these concerns, a more »

Illness Perception Impacts on Vasculitis Symptoms, Especially Fatigue

How a person perceives their illness can be an important part of staying with treatment and continuing recovery of function over time. In addition, a person’s outlook on their disease may have an impact on symptoms such as fatigue. Peter C. Grayson, MD, and others studied the differences in illness perception to identify risk for more »

VF’s Monday Question: We ask. You answer. We all Learn.

Using social media to connect, share, and support patients living with vasculitis and their families. The Vasculitis Foundation strives to connect our community to share knowledge, experiences and to offer encouragement to each other. Our patients and families have shared their experiences through our Vasculitis Stories Project. The responses were thoughtful and wide-ranging, proving that vasculitis more »

Planning Ahead for Emergency Visits

I work as an RN in an emergency department in downtown Cleveland and I see people on a daily basis who through no fault of their own, end up in one of our rooms needing medical attention. Whether it be an accident or some other medical emergency, the doctors and nurses need to know medication allergies, medications and more »

Going Beyond the Physical: The Mental and Emotional Toll of Rheumatic Diseases

Rheumatic diseases can be physically devastating. They often cause pain and disability – leading those who suffer from rheumatic diseases to make drastic lifestyle changes. A once spotless house is covered in dust. Running shoes languish in the closet. A toolbox sits unopened. Rheumatic diseases can be physically devastating. They often cause pain and disability more »

Successfully Manage your Vasculitis

  Receiving a diagnosis of vasculitis can be overwhelming. The Vasculitis Foundation encourages patients, their family members and caregivers to learn as much as possible about vasculitis so they can effectively manage the disease. Assemble your medical team. Patients with vasculitis often have multiple specialists treating the disease. It is very important that your medical team be experienced more »

Reservoirs of Staph can Lurk Deep within the Nose

Scientists at the Stanford University School of Medicine have revealed that formerly overlooked sites deep inside the nose may be reservoirs for Staphylococcus aureus, a major bacterial cause of disease. The results of the study were published in Cell Host & Microbe. The Stanford investigators further found an inverse relationship between the presence of S. aureus at these more »

Natural Treatments for HSP

Henoch Schonlein Purpura, otherwise known as HSP, is a type of vasculitis that occurs largely in the pediatric population. In fact, HSP is the most common type of childhood vasculitis, and it often occurs following an upper respiratory infection. Like all vasculitis syndromes, HSP is characterized by inflammation in the walls of the blood vessels. Some physicians may more »

Using Complementary Health Practices (Time to Talk Tips)

When patients tell their providers about their use of complementary health practices, they can better stay in control and more effectively manage their health. When providers ask their patients, they can ensure that they are fully informed and can help patients make wise health care decisions. Here are 4 tips to help you and your health care providers more »

Hospital Stays and ER Visits

Talking with a doctor during a hospital stay or in the emergency room (ER) can be stressful. Hospital Schedules Most hospitals have a daily schedule. This means that things like your doctor visits, medical tests, and meals will be at a similar time each day. It may be helpful to know this schedule and talk more »

Caregiver stress: Tips for taking care of yourself

Caring for a loved one strains even the most resilient people. If you’re a caregiver, take steps to preserve your own health and well-being. With an aging population and changes in health care, such as shorter hospital stays, more and more caregiving is being provided by people who aren’t health care professionals. A caregiver is more »

Abatacept and Non-severe relapsing GPA

An open-label trial of abatacept (CTLA4-IG) in non-severe relapsing granulomatosis with polyangiitis (Wegener’s)  Authors:  Langford CA, Monach PA, Specks U, Seo P, Cuthbertson D, McAlear CA, Ytterberg SR, Hoffman GS, Krischer JP, Merkel PA; for the Vasculitis Clinical Research Consortium. Abstract Objectives:  To determine the safety and efficacy of abatacept in non-severe relapsing granulomatosis with more »

Rheum to Heal – A New Initiative from The Hospital for Special Surgery

Rheum to Heal is the first ever narrative medicine journal in rheumatology. This is a place for patients, family members, physicians and all those whose lives are influenced by and those who influence the field of rheumatology to share their stories, their artwork, and their inspirations. Please join us on this journey into the lives and narratives of more »

Beyond the Negative

Dissertation investigates depression, anxiety and life satisfaction in vasculitis patients. A York St. John University student’s dissertation investigates the role of metacognitions in adapting to living with vasculitis. Helen Mayor, who did the research as part of her psychology degree, identified higher levels of depression and anxiety and lower levels of life satisfaction in vasculitis more »

The Social Cost of Vasculitis

Over the past 10 years I have watched my mother struggle with an autoimmune disease. She has gone from a vibrant, energetic woman who rearranged the living room furniture every two months to someone who relies on my father to bathe and dress her. She has had a hard time accepting her multiple sclerosis (MS), more »

Lessons Learned

If you’re a fan of Westerns, you may recall the movie Open Range starring Robert Duvall and Kevin Costner. In one of my favorite scenes, their crusty cowpoke characters peer together over the rolling prairie during a typically sparse but profound conversation: Duvall: “How long we been ridin’ together Charlie? “ Costner: “Nigh on 10 more »

The Real Promise of Mobile Health Apps

Mobile devices have the potential to become powerful medical tools As a volunteer in a trial of mobile health technology, I can attest that it’s incredibly cool to pick up your iPhone, fire up an application to monitor your heart rate and rhythm, and then beam your ECG reading to a cardiologist halfway around the more »

Before Leaving the Hospital, Consult Your Checklist

When checking into a hospital, patients naturally worry whether their visit will go well. But leaving the hospital safely can sometimes present an even trickier challenge. Patients are going home sooner and sicker than ever before. And without clear and comprehensive instructions about what to do after a hospital stay, they may wind up back more »

NIH-supported scientists find genes influence susceptibility to problems from vitamin D deficiency

An international team of researchers has found that the vitamin D receptor gene (VDR), which senses and communicates the presence of vitamin D to the body, influences the chance that people with vitamin D deficiency develop negative health outcomes. Some variants of VDR may have a protective effect, while others might increase these people’s predisposition for the more »

Do you always follow your physician’s advice?

Over the years, the American Autoimmune Related Diseases Association (AARDA) learned in conversations with our members and others that they might or might not follow their doctor’s recommendations for treatments and might or might not share their decisions with their doctors. Why is that? Does it matter? Delving into these questions, we found that, not more »

Eating to Beat Inflammation

Last Saturday, I spoke at a conference at Emory for the Vasculitis Foundation on anti-inflammatory foods. Like me, you may be asking, “What is vasculitis?” Vasculitis is a group of diseases involving inflammation of the vascular system (or blood vessels). Although there is very little research on nutrition and vasculitis, because it’s an inflammatory condition, more »

Vasculitis Related Genes Cause Inflammation of Blood Vessels

Medical scientists at Trinity College in Dublin, in a pan-European collaborative study, have discovered genes that contribute to the condition vasculitis, causing the inflammation of blood vessels. The findings have been recently published in the leading international publication The New England Journal of Medicine. Vasculitis can affect all sizes of blood vessels, including tiny vessels more »

Lancet Article Investigates Primary CNS Vasculitis

An article in the Lancet (2012, 380: 767–77) provides an overview on the current state of diagnosis and treatment of primary CNS vasculitis. It was written by Carlo Salvarani, Department of Internal Medicine, Azienda Ospedaliera ASMN, Istituto di Ricoveroe Cura a Carattere Scientifico, Reggio Emilia, Italy; Robert Brown Jr., Department of Neurology, Mayo Clinic, Rochester, more »

PEXIVAS Study Update

March 2013:  This clinical trial is enrolling patients. PEXIVAS: An International Randomized Controlled Clinical Trial Assessing Plasma Exchange and Steroid Dosing in the Treatment of Severe Anti-Neutrophil Cytoplasm Antibody (ANCA) Associated Vasculitis Introduction: The PEXIVAS study is the largest clinical trial ever to be conducted for vasculitis. The study will study 500 patients with ANCA-associated more »

Treat-to-target in vasculitis: is this a sensible approach?

January 2013:  An article in Clinical and Experimental Rheumatology (2012,30,4,Suppl.73, Pg. 0149-0153) provides an overview of the pathophysiological drivers that may lead to the identification of specific targets that can “turn off “ the disease. The article is written by Prof. Raashid Luqmani, NIHR Musculoskeletal Biomedical Research Unit, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal more »

Disease and the Public Eye

June 2013:  I’m in line at the supermarket holding three items close to my chest. But I might as well be juggling my Kleenex box, toothpaste tube and an orange. Because — as you’d surely notice if you were behind me in line — I‘m bent forward at a sharp angle, which makes holding things more »

The Chronically Collegiate: Making College Accessible to Chronically Ill Students

January 2013 By Nikki Crouse Managing chronic illness for anyone can be a struggle. As a college student, there are a few more challenges associated with chronic illness; the biggest one is fitting into a world of academia developed for everyone else but someone capable of an education who just also happens to be chronically more »

Shaking Out Clues to Autoimmune Disease

Researchers gained new insight into how an immune cell involved in several autoimmune disorders is regulated. Among their findings was a potential link with salt consumption. Autoimmune diseases arise when the immune system, which normally protects the body from invading microbes, mistakenly attacks the body’s own tissues. These diseases include type 1 diabetes, inflammatory bowel diseases and multiple more »

Cogan’s Syndrome

March 2013 Cogan’s syndrome (CS) is the combination of hearing loss, vertigo, and inflammation in the eyes of uncertain cause, which can be associated with a large-, more often than medium-, size vessel vasculitis in 10-15% of patients. It is not clear that Cogan’s syndrome is a primary vasculitis. Large vessel vasculitis predominates in the more »

Update: The new, 2012 Revised International Chapel Hill Consensus Conference Nomenclature of Vasculitides

January 2013 By Eric L. Matteson, MD, MPH, Mayo Clinic The new nomenclature for the various forms of systemic vasculitis has just been released. This system of naming vasculitis is an update of the vasculitis nomenclature, first published in 1994 as a result of work of the first International Chapel Hill Consensus Conference on the more »

Five Tools to Cope with Invisible Illness

January 2013 By Lisa Copen “You look so good! You can’t be as bad as you say. You look perfectly healthy.” “You think you have fatigue? Try working full time plus having four children! Then you’ll know what chronic fatigue is.” “I think you’re spending too much time thinking about how you feel. You need more »

Farewell to House

January 2012 Raising awareness of vasculitis takes many forms and for the past eight years, the VF has had assistance from House, M.D., an American television medical drama that debuted on the Fox network on November 16, 2004. The show’s central character, Dr. Gregory House (played by Hugh Laurie), an unconventional and misanthropic medical genius, headed a team of diagnosticians at the fictional Princeton-Plainsboro Teaching Hospital more »

Nutrition and Vasculitis

January 2013 By Aimee Shea, MPH, RD, CSO, LDN, Outpatient Oncology Dietitian, NC Cancer Hospital  Most people diagnosed with vasculitis will likely agree – nutrition is complicated.  Both the symptoms and the treatment of this disease can significantly influence nutritional status.  While at the same time, what you do (or don’t) eat can impact the more »

Types of Blood Tests

January 2012 Some of the most common blood tests are: A complete blood count (CBC) Blood chemistry tests Blood enzyme tests Blood tests to assess heart disease risk Blood clotting tests Complete Blood Count The CBC is one of the most common blood tests. It’s often done as part of a routine checkup. The CBC more »

Ocular Side Effects of Various Medications (Drops, Pills and Injectables)

January 2012 By James A. Garrity MD Whitney and Betty MacMillan Professor of Ophthalmology Mayo Clinic, Rochester, MN One of the functions of the Vasculitis Foundation has been to provide information to patients regarding the various types of vasculitis and its treatment. We have never considered organ-specific effects of treatment on the eye. The following more »

Your Health Depends on Good Communication

December 2011 Asking questions and providing information to your doctor and other care providers can improve your care. Talking with your doctor builds trust and leads to better results, quality, safety, and satisfaction. Quality health care is a team effort. You play an important role. One of the best ways to communicate with your doctor more »

Placebo Improves Asthma Symptoms, But Not Lung Function

July 2011 By Allison Bierly, Ph.D. Placebo treatment may make asthma patients feel better but not actually lessen disease, according to a new study. The finding helps clarify the benefits and limitations of the placebo effect. It may also influence how doctors measure successful treatment. The placebo effect is a well-known phenomenon in which patients’ more »

Deep Vein Thrombosis

July 2011 Deep vein thrombosis (DVT) can be a killer. Here’s how to understand and prevent DVT—at any age. What Is Deep Vein Thrombosis? Deep vein thrombosis (DVT) is a blood clot that forms in a vein deep in the body. Blood clots occur when blood thickens and clumps together. Most deep vein blood clots more »

Helping WG and MPA Patients Avoid Cardiac Events

May 2011 A new diagnostic model will help physicians identify those at risk for cardiovascular events among patients newly diagnosed with Wegener’s granulomatosis (WG) and microscopic polyangiitis (MPA). This is particularly valuable because patients with WG and MPA are 3.7 times more likely than those without vasculitis to die from a cardiovascular event in the more »

Vasculitis and Oral Health

May 2011 By John Mills, BDS, DGDP UK, Chairman, Vasculitis UK Vasculitis can affect all parts of the body and the mouth is no exception. Large, persistent and excruciatingly painful mouth ulcers are sometimes a characteristic of active GPA Wegener’s as is severe toothache that moves around the mouth, especially in the upper jaw. When more »

Supporting International Research for Rare Diseases

April 2011 Two recent workshops sponsored by the European Commission, Health Directorate, DG Research and Innovation, and the US National Institutes of Health Office of Rare Diseases Research (ORDR), focused on the development of international research initiatives of rare diseases. The first workshop, Fostering Trans-Atlantic Cooperation on Rare Diseases, was held held on October 26 more »

New Horizons Discovered for GCA Treatment

January 2011 By Cornelia Weyand, MD, PhD New research from Stanford University has identified three molecules that play a role in the abnormal immune responses of GCA. The discovery may lead to more effective ways of measuring disease activity and new GCA therapies. “This opens a whole new world of biology for vasculitis,” says the more »

The Best Kept Secret in Health Care

November 2010 “Collecting your family health history is, indeed, the best kept secret in health care,” according to Dr. Charis Eng, a cancer geneticist at the Cleveland Clinic’s Genomic Medicine Institute. Dr. Eng says, “I view family health histories as back to the future.” Holiday gatherings can be a good chance to gather the information, more »

SED Rate

November 2010 By Mayo Clinic staff Definition Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. A sed rate test isn’t a stand-alone diagnostic tool, but the result of a sed rate test may help your doctor diagnose or monitor an inflammatory disease. Red blood more »

Vasculitis: Possible Mechanisms and Role of Autoimmunity

August 2010 By Nabih I. Abdou, MD, PhD Clinical Professor of Medicine Vasculitis Foundation Medical Consultant Presented at the All Star Vasculitis Symposium Long Beach,California Why do we need to know about mechanisms of vasculitis? To identify and target our treatment towards the main mechanism(s) that lead to vasculitis and be able to have a more »

What is Peripheral Neuropathy?

July 2010 Peripheral neuropathy describes damage to the peripheral nervous system, which transmits information from the brain and spinal cord to every other part of the body. More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend more »

Exercise Takes the Edge off Chronic Pain

May 2010 When you’re in pain, exercise is probably the last thing on your mind. But it may be more important than you think. Regular exercise is a versatile weapon in the fight against chronic pain. The risks of inactivity When you’re inactive, your muscles — including your heart — lose strength and work less more »

Food for Thought: Let’s Defend Against Disease

March 2010 Inflammation, once simply considered the body’s healing response, is now the subject of close study as a key component of many diseases such as arthritis.  Inflammatory response is becoming recognized in heart disease, cancer, diabetes, asthma, and Alzheimer’s disease.  And perhaps not surprising is preliminary research showing a possible association of inflammation with more »

What Role for Acupuncture in Chronic Disease?

February 2010 Scientists aren’t ready to claim that acupuncture works for any specific disease -yet.  But studies supported by the NIH National Center for Complementary and Alternative Medicine (NCCAM) have yielded promising evidence that this ancient practice modifies perception of pain and its processing by the brain and that it may be helpful for pain more »

Protecting Yourself From Shingles

January 2010 “I wouldn’t wish shingles on my worst enemy!” That’s frequently the reaction of those who experience the pain of this common virus. Here’s what you need to know to help prevent or treat the disease. Shingles is a painful skin rash caused by the varicella zoster virus (VZV). VZV is the same virus more »

Optimism and Health

July 2009 Shift from the dark side Did you know that your outlook on life can impact your health and quality of life?  There’s and ever-expanding body of research examining how your outlook may relate to various aspects of health, feelings of well-being, quality of life and even longevity. Consider the evidence Studies have found more »

Wegener’s Granulomatosis: Survey of 701 Patients in North America. Changes in Outcome in the 1990s

January 2002 NABIH I. ABDOU, GLENN J. KULLMAN, GARY S. HOFFMAN,GORDON C. SHARP, ULRICH SPECKS,THOMAS MCDONALD, JAMES GARRITY, JAMES A.GOEKEN, and NANCY B. ALLEN ABSTRACT.  Objective. To study the medical and socioeconomic impact of Wegener’s granulomatosis (WG) in a large cohort (n=701) of patients who are members of the international WG Support Group (WGSG). Methods. more »