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VASCULITIS (vas que LY tis)

VASCULITIS (vas que LY tis). Inflammation of blood vessels September 5, 2006. THIS PRESENTATION. PURPOSES PATIENT SUPPORT INFORMATION INCREASED PUBLIC AWARENESS 45 SLIDES - ONLY AUTOIMMUNE VASCULITIS 3 SLIDES - ON-LINE SUPPORT GROUPS 12 SLIDES - E-MAIL SUPPORT GROUPS

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VASCULITIS (vas que LY tis)

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  1. VASCULITIS (vas que LY tis) Inflammation of blood vessels September 5, 2006

  2. THIS PRESENTATION PURPOSES • PATIENT SUPPORT INFORMATION • INCREASED PUBLIC AWARENESS 45 SLIDES - ONLY AUTOIMMUNEVASCULITIS 3 SLIDES - ON-LINE SUPPORT GROUPS 12 SLIDES - E-MAIL SUPPORT GROUPS VASCULITIS AWARENESS: SEPT 24-30, 2006

  3. KINDS OF VASCULITIS • HYPER-SENSITIVIE Body responds to allergens - multiple factors Exposure to medications Genetic Predisposition Environmental causes Usually stops when allergen is removed • INFECTIOUS Various viruses and bacteria • AUTOIMMUNE Malfunction of immune system - multiple factors Exposure to medications Genetic predisposition Environmental exposures Often chronic (permanent change in immune system)

  4. WHAT TO DO FIRST? If you have been diagnosed with or suspect vasculitis, for early patient support: VASCULITIS FOUNDATION Kansas City, MO http://www.vasculitisfoundation.org 1-800-277-9474 U.S. 816-436-8211 Foreign & Fax

  5. INTRODUCTION TOAUTOIMMUNE VASCULITIS(Abbreviated as “AV”) • NEVER HEARD OF AUTOIMMUNE VASCULITIS ? • WELL, THAT’S BECAUSE IT’S RARE

  6. HOW RARE? • INCIDENCE OF AVs RANGES FROM ABOUT 1 IN 10 THOUSAND TO ABOUT 1 IN 50 THOUSAND PERSONS • YOU MAY KNOW SOMEONE WHO HAS AUTOIMMUNE VASCULITIS

  7. WHAT IS AUTOIMMUNE? THE IMMUNE SYSTEM CONSISTS OF A WIDE VARIETY OF CELLS AND ANTIBODIES THAT GUARD AGAINST INFECTION • AUTOIMMUNITY IS A MALFUNCTIONING IMMUNE SYSTEM • THE BODY’S IMMUNE SYSTEM MISTAKES THE BODY’S TISSUES FOR BACTERIAL OR VIRAL INVADERSAND ATTACKS IT’S OWN TISSUES!

  8. COMMON AUTOIMMUNE DISEASES • RHEUMATOID ARTHRITIS • LUPUS ERYTHEMATOSIS • HYPOTHYROIDISM • AUTOIMMUNE LIVER DISEASE THESE ARE NOT VASCULITIS [Although vasculitis can happen in RA and SLE]

  9. WHAT IS VASCULITIS? • INFLAMMATION OF THE WALLS OF BLOOD VESSELS • CAN BE ANYWHERE IN THE BODY • DAMAGES VESSELS AND ADJACENT TISSUES • CAN BE PRIMARY OR SECONDARY TO ANOTHER MEDICAL CONDITION

  10. WHAT BLOOD VESSELS ARE AFFECTED? • IT VARIES GREATLY, BUT ANY BLOOD VESSEL CAN BE AFFECTED: • ARTERIES • ATERIOLES • CAPILLARIES • VENULES • VEINS • CAN DAMAGE VIRTUALLY ANY ORGAN OR TISSUE

  11. VESSEL SIZE & TYPE OF AV

  12. THINGS TO KNOW ABOUT AVs • AUTOIMMUNE VASCULITIS OFTEN GOES UNDIAGNOSISED FOR MONTHS AND YEARS • EVENTUALLY A CRISIS FORCES PATIENTS AND PHYSICIANS TO SEEK MORE EXPERT HELP • AUTOIMMUNE VASCULITIS IS NOT CONTAGIOUS

  13. MORE ABOUT AUTOIMMUNE VASCULITIS • AUTOIMMUNE VASCULITIS IS NOT DIRECTLY INHERITABLE • THE TENDENCY TO DEVELOP AN AUTOIMMUNE DISEASE IS INHERITABLE • THERE ARE ABOUT 15 KINDS OF AVs NOTE - PLURAL OF VASCULITIS IS VASCULITIDES “VAS-QUE-LIT-I-DEEZ”

  14. EVEN MORE ABOUTAUTOIMMUNE VASCULITIS • CAN BE LOCAL OR SYSTEMIC • SYSTEMIC CAN INVOLVE MANY ORGANS AND TISSUES. • UNTREATED LOCAL AV MAY BECOME SYSTEMIC

  15. NAMES OF AUTOIMMUNE VASCULITIDES • Behcet’s Disease • Buerger’s Disease • Central Nervous System Vasculitis (CNSV) • Churg-Strauss Syndrome (CSS) • Cryoglobulinemic vasculitis • Giant Cell Arteritis (GCA) • Henock-Schonlein Purpura (HSP) • Hypersensitivity Vasculitis (MORE)

  16. MORE NAMES OFAUTOIMMUNE VASCULITIDES • Kawasaki’s Disease (KD) • Microscopic Polyangiitis (MPA) • Polyarteritis nodosa (PAN) • Polymyalgia rheumatica (PR) • Rheumatoid vasculitis (RV) • Takayasu’s arteritis (TAK) • Wegener’s granulomatosis (WG}

  17. ABOUT AUTOIMMUNE VASCULITIS • MOST UNTREATED AUTOIMMUNE VASCULITIS IS FATAL SOONER OR LATER • VASCULITIS CAN ALMOST ALWAYS BE CONTROLLED (Remission) • KEY TO CONTROL IS EARLY DIAGNOSIS

  18. AUTOIMMUNE VASCULITIS CAUSES • ENVIRONMENTAL EXPOSURES Silica, Organic compounds, ? • GENETIC PREDISPOSITION Family members with autoimmune diseases • INFECTION Bacterial, Viral, Parasitical ? No clear proof yet although in some cases hepatitis B and C are associated with vasculitis

  19. WHO GETS AUTOIMMUNE VASCULITIS? • INFANTS • CHILDREN • ADOLESCENTS • ADULTS • SENIORS • FEMALES • MALES ANYONECAN DEVELOP AN AV!

  20. HOW DOES AV SHOW UP? • IN A VERY WIDE VARIETY OF SYMPTOMS • TWO PEOPLE WITH THE SAME AUTOIMMUNE VASCULITIS MAY HAVE SIGNIFICANTLY DIFFERENT SYMPTOMS

  21. ABOUT SYMPTOMS OF AUTOIMMUNE VASCULITIS • AUTOIMMUNE VASCULITIDES MIMIC OTHER MORE COMMON DISEASES • RARELY ARE SYMPTOMS ALONE ENOUGH TO DIAGNOSE AN AV

  22. AUTOIMMUNE VASCULITIS SYMPTOMS • RASH • FATIGUE • UNEXPLAINED FEVER • WEAKNESS • HEADACHE • UNEXPLAINED WEIGHT LOSS • PAIN IN MUSCLES &/OR JOINTS (More)

  23. MORE AV SYMPTOMS • CHRONIC COUGH • BLOOD IN URINE • BLOODSHOT EYES • FLUID IN EARS • CHANGES IN MEMORY, COORDINATION, BALANCE • CHANGES IN VISION • And … , and…. , and…..

  24. COULD I HAVE VASCULITIS? • ANY TIME YOU GET SICK, IT IS UNLIKELY YOU HAVE AN AV • AVs ARE RARE AND MIMIC MANY OTHER ORDINARY DISEASES • CHANCES ARE YOU HAVE ONLY SOME ORDINARY TREATABLE CONDITION

  25. TESTS FOR AUTOIMMUNE VASCULITIS? • MOST AUTOIMMUNE VASCULITIDES DON’T HAVE SPECIFIC TESTS THAT CAN DIAGNOSE THE AV WITHOUT DOUBT • THERE ARE A VARIETY OF TESTS THAT CAN INDICATE AN INFLAMMATORY CONDITION • OFTEN BIOPSY IS REQUIRED • SOME ANTIBODY TESTS CAN HELP • SOME RADIOGRAPHIC STUDIES CAN HELP • ANGIOGRAPHY, MRID, CT SCANS

  26. HOW IS AUTOIMMUNE VASCULITIS DIAGNOSED? • DIAGNOSIS IS MOSTLY BY ELIMINATING ALL OTHER POSSIBLE CAUSES. • DIAGNOSIS CAN BE DIFFICULT, EXPENSIVE AND LENGTHY

  27. WHO DIAGNOSESAUTOIMMUNE VASCULITIS? • OFTEN A RHEUMATOLOGIST • CAN BE ANY PHYSICIAN, OR MEDICAL PROFESSIONAL WHO SUSPECTS AUTOIMMUNE VASCULITIS

  28. WHO TREATSAUTOIMMUNE VASCULITIS? • RHEUMATOLOGISTS • NEPHROLOGISTS • PULMONARY SPECIALISTS • NEUROLOGISTS • DERMATOLOGISTS • MANY OTHER SPECIALTIES DEPENDING ON WHAT ORGANS AND TISSUES ARE AFFECTED.

  29. WHERE TO GET DIAGNOSED? • PHYSICIANS EXPERIENCED IN DIAGNOSING AND TREATING VASCULITIS • OFTEN AT MAJOR MEDICAL CENTERS AND TEACHING HOSPITALS.

  30. HOW IS VASCULITIS TREATED? • VIRTUALLY ALWAYS WITH PREDNISONE OR SIMILAR GLUCOCORTICOIDS • FREQUENTLY WITH STRONG DRUGS TO SUPPRESS THE IMMUNE SYSTEM • TREATMENT IS LENGTHY, MONTHS OR YEARS • STOP MEDICATIONS THAT CAUSE ALLERGIC & AUTOIMMUNE REACTIONS

  31. WHAT IMMUNOSUPPRESSIVES? CANCER DRUGS USED IN MUCH SMALLER DOSAGES • CYTOXAN • METHOTREXATE • CELLCEPT • IMURAN • LEUKERAN • UNUSUALLY OTHER IMMUNOSUPPRESSIVES

  32. OTHER TREATMENT METHODS • BLOOD PLASMA EXCHANGE CALLED PLASMAPHERESIS THAT REMOVES HARMFUL ANTIBODIES FROM BLOOD • INTRAVENOUS IMMUNOCLOBULIN “G” (IVIg)(INFREQUENTLY EXCEPT FOR KAWASAKI DISEASE) • NEW “BIOLOGICAL” MEDS THAT SELECTIVELY SUPPRESS SPECIFIC PARTS OF THE IMMUNE SYSTEM

  33. INFORMATION ON VASCULITIS • VASCULITIS FOUNDATION IN KANSAS CITY, MO 1-800-277-9474 vf@vasculitisfoundation.org http://www.vasculitisfoundation.org • VASCULITIS CLINICAL RESEARCH CONSORTIUM (VCRC) 1-617-414-2500 acorbo@bu.edu http://rarediseasesnetwork.epi.usf.edu/vcrc/index.htm

  34. MORE INFORMATIONON VASCULITIS • Cleveland Clinic Center for Vasculitis http://www.clevelandclinic.org/arthritis/vasculitis/default.htm 216-445-6996 hoffmag@ccf.org • Johns Hopkins Vasculitis Center http://vasculitis.med.jhu.edu/ 410-550–6825 jstone@welch.jhu.edu

  35. MORE INFORMATIONON VASCULITIS MAYO CLINIC - ROCHESTER MN Dr. Ulrich Specks M.D. 507-284-8450 specks.ulrich@may.edu http://www.mayoclinic.org/pulmonary-rst/diseases.html UNIVERSITY OF NORTH CAROLINA Dr. Ronald Falk M.D. Ronald_falk@med.unc.edu Ph (919) 966-2561 x 224 Office 349 MacNider Hall http://www.unckidneycenter.org/vasculitis_brochure.pdf

  36. INTERNATIONAL CONTACTS FOR AUTOIMMUNE VASCULITIDES BRAZIL ALEXANDRA VILLA-FORTE M.D. Disciplina de Rhumatolgia, Departamento de Mediciana, Escola Paulista de Medicina Universidade Federal de Sco Paulo Brazil E-mail: alexvillaforte@terra.com.br

  37. INTERNATIONAL CONTACTS (continued) FRANCE LOIC GUILLEVIN M.D. Department of Internal Medicine Hospital Cochin, University Paris 5 27 rue du Faubourg Saint Jacques, 75014 Paris, France Phone: 33 158-411321 Email: loic.guillevin@cch.ap-hop-paris.fr (MORE)

  38. INTERNATIONAL CONTACTS (continued) GERMANY WOLFGANG L GROSS M.D., PH.D. Director, Dept. of Rheumatology, University of Lübeck, Clinic for Rheumatology, Bad Bramstedt, Ratzeburger Allee 160, Lübeck, 23538 Germany Phone: 49-451-500-2368 Email: gross@rheuma-zentrum.de (MORE)

  39. INTERNATIONAL CONTACTS (continued) IRELAND GEORGE MELLOTTE M.D. St. James Hospital, James St. Dublin 8, Ireland Ph 3531-410-3000 GeneralEnquiries@stjames.ie http://webrheum.bham.ac.uk/vasculitis/ (MORE)

  40. INTERNATIONAL CONTACTS (continued) SPAIN MARIA C. CID M.D., Department of Internal Medicine Hospital Clinic – University of Barcelona Villarroel 170, Barcelona, Spain 08036, Phone: 34-93-227-9365, Email: mccid@clinic.ub.es (MORE)

  41. INTERNATIONAL CONTACTS (continued) UNITED KINGDOM DAVID JAYNE M.D. The Vasculitis Service and Vasculitis Clinic Box 118, Renal Unit, Addenbrooke’s Hospital Cambridge CB2 2QQ, United Kingdom Phone: 44-1223-217259, Fax: 44-1223-586797 Email: dj106@cam.ac.uk http://www.addenbrookes.nhs.uk/serv/clin/med/vasculitis1.html (MORE)

  42. INTERNATIONAL CLINICS AND ORGANIZATIONS European Vasculitis Study Group (EUVAS): http://www.vasculitis.org Groupe Français d'Etude des Vascularites: http://www.vascularite.com/ International Network for the Study of Systemic Vasculitides (INSSYS) http://www2.ccf.org/inssys/ Rheuma-Klinik Bad Bramstedt http://www.rheuma-zentrum.de

  43. BOOKLETS/BROCHURES University of North Carolina Brochure “What Is Small-Vessel Vasculitis?” http://www.unckidneycenter.org/vasculitis_brochure.pdf Stuart Strange Trust, U.K. Booklet “Living with Vasculitis” http://webrheum.bham.ac.uk/Vasculitis/Booklet/LivingWithVasculitis.pdf “Wegener’s Granulomatosis” http://www.orpha.net/data/patho/GB/uk-WG.pdf (All require Adobe Acrobat Reader) (More)

  44. MORE BOOKLETS/BROCHURES “What you should know about Wegener’s Granulomatosis” http://www.stjames.ie/ClinicalInformation/WegenersGranulomatosisHandbook/file,8398,en.PDF “Wegener’s Granulomatosis” http://www.vumc.nl/aig/onderwijs/ROIG/23112005/ ANCA%20vasculitisgross.pdf (Both above require Adobe Acrobat Reader)

  45. SOURCES FOR INFORMATION ON VASCULITIS • NATIONAL LIBRARY OF MEDICINE (gateway.nlm.nih.gov http://www.ncbi.nlm.nih.gov) • ON-LINE MEDICAL PROFESSIONAL WEB PAGES • HOSPITAL MEDICAL LIBRARIES • ON-LINE EMAIL GROUPS AND MESSAGE BOARDS

  46. VASCULITIS PATIENT SUPPORT ORGANIZATIONS Vasculitis Foundation (All vasculitides) http://www.vasculitisfoundation.org Central Nervous System Vasculitis Foundation Inc. (CNSV) http://www.cnsvfinc.org/contact.php Churg-Strauss Syndrome Assoc. (CSS) http://www.cssassociation.org (More)

  47. VASCULITIS PATIENT SUPPORT(continued) Churg-Strauss Syndrome (CSS) International Support Group http://www.churg-strauss.com/ Giant Cell (Temporal) Arteritis (GCA) http://nmrfoundation.blogspot.com/ Polyarteritis Nodosa (PAN) http://www.pansupport.org/ (More)

  48. VASCULITIS PATIENT SUPPORT(continued) Takayasu's Arteritis Association (TAK) http://www.takayasus.com Wegener’s Granulomatosis (WG) http://vasculitisfoundation.org End Patient Support Groups

  49. SELECTED AUTOIMMUNE E-MAIL GROUPS Autoimmune Diseases E-mail Group http://groups.yahoo.com/autoimmunediseases Auto_immune_diseases E-mail Group http://groups.yahoo.com/auto_immune_disease Autoimmune Disorders E-mail Grouphttp://groups.yahoo.com/autoimmunedisorder (More)

  50. ARTERITIS E-MAIL GROUPS Arteritis – Vasculitis Clinical Research Consortium http://groups.yahoo.com/arteritis Arteritis – Giant Cell / Temporal Arteritis E-mail Group http://groups.yahoo.com/giantcellarteritis Arteritis – Takayasu’s E-mail Group http://groups.yahoo.com/Takayasus_arteritis (More email groups)

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