SITE RESOURCES 

This list is of files and links from my WG web page at http://www.wegenersgranulomatosis.net that are relative to WG & Vasculitis.  The files have been updated when needed.  I can't guarantee that all the links are still good, but most are.

Notes:  Last update 11 February 2010

 HTML (html/htm) files shown in bold, underlined blue are viewed by web browser.

WORD (.doc) files (shown in bold, underlined blue) have to be downloaded to view

 # Identifies files the content of which was created by myself. (I have no medical training.)

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THE FOLLOWING ARE EXTERNAL LINKS FROM MY WEBSITE AT VASCULITIS-PATIENT.com  

Andrew MacLean Exodus web hosting

  http://www.andrewmaclean.com

Antibodies - Monoclonal  - List of Monoclonals in development (out of date?)

  http://www.bitsplace.com/bitsplace/Autoimmunediscomp.html

Bactrim Desensitization - Univ. of Washington

  http://depts.washington.edu/madclin/providers/protocols/bactrim.htm

Clinical Trials

  Nat'l. Institute of Health

  http://www.clinicaltrials.gov
  http://clinicaltrials.gov/ct/screen/AdvancedSearch

  European Clinical Trials

  http://www.med.cam.ac.uk/nephrology/research/vasculitis.html
  http://www.vasculitis.org/progress.htm

  CTLA-4 - Abatacept

  http://clinicaltrials.gov/ct/show/NCT00482066?order=1

  Rituxan/Rituximab]

  http://www.immunetolerance.org/RAVE/

      Possible side dangerous side effect

      http://www.rheumatology.org/publications/hotline/0107leuko_email_20070102.asp

Contact patients

  Chat - Web page access to IRC -  9 PM EST/1 AM GMT Monday

    http://www.newnet.net/newnewnet/jirc/chatme.html

  Email Client Program for on-line chat

  For IRC on PC - mIRC

    http://www.mirc.com/

  For MacIntosh

    http://www.ircle.com/

  Facebook

    http://www.facebook.com/

  MySpace - Health and Wellness Blogs

    http://searchresults.myspace.com/index.cfm?fuseaction=groups.ListGroups&categoryID=17

  Yahoo Groups

    http://groups.yahoo.com/  Search for desired subject group

  Health & Wellness Groups

    http://health.dir.groups.yahoo.com/dir/Health___Wellness

  Guidelines on use

    http://www.wegenersgranulomatosis.net/Email_Guidelines.html

  Vasculitis Foundation Area Contacts

    http://www.vasculitisfoundation.org/support/domestic North American

    http://www.vasculitisfoundation.org/support/international  International

Exodus Web Hosting - Hosts Vasculitis-Patient.com

  http://www.exoduswebhosting.com

European Immuno-absorption  Devices and Practices

  http://www.uninet.edu/cin2000/conferences/braun/braun.htm  May be out of date

FAX - How to send fax from your computer

  http://www.protus.com
  http://www,efax.com

Glossary of Medical Terms

  http://vasculitis.med.jhu.edu/whatis/glossary.html/

Hemaphereis (Plasmapheresis)

  http://www.wegenersgranulomatosis.net/Hemapheresis Guidelines.pdf

Medical tests

  ANCA Testing and Interpretation - Laboratory standard in the diagnosis and therapy monitoring of autoimmune disease-vasculitis

    http://www.ifcc.org/index.php?option=com_content&task=view&id=346&Itemid=31

  Autoimmune Panel of Tests

    http://depts.washington.edu/labweb/Divisions/Imm/ImmTesting/index.htm

  Laboratory Tests - Standards - Autoimmune Diseases

    http://www.ifcc.org/index.php?option=com_content&task=view&id=346&Itemid=31

Nasal Irritagion

    http://www.wegenersgranulomatosis.net/ - 36_-_NASAL_HEALTH
    http://www.sinusitisfaq.org

  Breathease Irrigation Fluid

    http://www.pharmacy-solutions.com/  %5Bpg 50%5D

  InterPlax

    http://www.conair.com/conair/products/detail.jsp?product=128

  Information on

    http://www.nasalrinse.com

  Items

    http://www.naturalsinushealth.com

    http://www.pharmacy-solutions.com/

  HydorMed

    http://www.hydromedonline.com/

  Hydropulse

    http://www.pharmacy-solutions.com/hydropulse.pdf

  Mayo Clinic Video

    http://www.mayoclinic.com/health/nasal-lavage/MM00552

National Center for Biotechnical Information (NCBI)

    http://www.ncbi.nlm.nih.gov/

National Institutes of Health (U.S.)

  Institute Of Infectious and Allergic Diseases  (NIAID) 

      http://www.niaid.nih.gov

  Division of Allergy and Immunology Testing

      http://www.niaid.nih.gov/cgi-shl/contacts/contacts2.cfm?abbreviation=DAIT

  Laboratory of Immunoregulation

      http://www/niaid.nih.gov/dir/labs/snelle

National Library of Medicine

  Clinical Trials

    http://clinicaltrials.gov/

  Directory of Health  Organizations

    http://dirline.nlm.nih.gov/

  Gateway Access

    http://gateway.nlm.nih.gov/gw/Cmd
    http://gateway.nlm.nih.gov/rd/www.nlm.nih.gov/medlineplus/healthtopics.html
    http://gateway.nlm.nih.gov/rd/www.nlm.nih.gov/medlineplus/encyclopedia.html
    http://gateway.nlm.nih.gov/rd/www.nlm.nih.gov/medlineplus/newsbydate.html

  Genetics Home Reference

    http://gateway.nlm.nih.gov/rd/ghr.nlm.nih.gov

  MedlinePlus

    http://www.nlm.nih.gov/medlineplus/
    http://www.nlm.nih.gov/medlineplus/druginformation.html
    http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
    http://www.nlm.nih.gov/medlineplus/directories.html
    http://www.nlm.nih.gov/medlineplus/libraries.html

  PubMed Centeral - Free archive of medical journals

    http://www.pubmedcentral.nih.gov/

National Center for Biotechnical Information

    http://www.ncbi.nlm.nih.gov/

Osteoporosis Tutorial

  http://www-medlib.med.utah.edu/WebPath/TUTORIAL/OSTEO/OSTEOPOR.html

Patient Records - Forms for AV

  http://vasculitis.med.edu/resources/forms.htm

Pharmaceuticals - Information

  http://www.rxlist.com
  http://www.nlm.nih.gov/medlineplus/druginformation.html

  Methotrexate and Folic Acid

  http://www.aafp.org/afp/20001001/1607.html

Physicians - How to Talk to Physicians

  http://elfstrom.com/arthritis/appointments.html

Sinusitis FAQ

  http://www.sinusitisfaq.org

Stem Cell Transplant and Autoimmune Vasculitis

  http://www.nature.com/nature/journal/435/n7042/full/nature03278.html
  http://www.nmff.org
  http://arthritis-research.com/content/2/4/276

Symposium Information - VF/WGA 2010

  http://www.vasculitisfoundation.org/2010vasculitis-symposium010

Urine Dipsticks-Test for protein & blood

  http://www.wgassociation.org/aboutwg/dipsticks.jsp

Vasculitis

  Autoimmune Types

  Behcet's disease

    http://www.vasculitisfoundation.org/behcetsdisease
    http://www.mayoclinic.com/health/buergers-disease/DS00807
    http://vasculitis.med.jhu.edu/typesof/behcets.html
  

  Buerger's disease

    http://www.mayoclinic.com/health/buergers-disease/DS00807
    http://vasculitis.med.jhu.edu/typesof/buergers.html

  Central Nervous System

    http://www.vasculitisfoundation.org/centralnervoussystem
    http://vasculitis.med.jhu.edu/typesof/cns.html
    http://www.clevelandclinic.org/arthritis/treat/facts/cns.htm

  Churg-Strauss Syndrome

    http://www.vasculitisfoundation.org/churgstrausssyndrome
    http://www.mayoclinic.com/health/churg-strauss-syndrome/DS00855  

    http://vasculitis.med.jhu.edu/typesof/churgstrauss.html

    http://www.clevelandclinic.org/arthritis/treat/facts/churg.htm

  Cryoglobulinemia

    http://vasculitis.med.jhu.edu/typesof/cryoglobulinemia.html

  Giant cell arteritis aka Temporal arteritis

    http://www.vasculitisfoundation.org/giantcellarteritis
    http://www.mayoclinic.com/health/giant-cell-arteritis/DS00440
    http://vasculitis.med.jhu.edu/typesof/giantcell.html
    http://www.clevelandclinic.org/arthritis/treat/facts/polymyalgia.htm

  Henoch-Schonlein purpura

    http://www.vasculitisfoundation.org/HenochSchonleinpurpura
    http://www.mayoclinic.com/health/henoch-schonlein-purpura/DS00838
    http://vasculitis.med.jhu.edu/typesof/hsp.htm

  Hypersensitivity vasculitis

    http://www.vasculitisfoundation.org/hypersensitivityvasculitis

  Kawasaki's disease

    http://www.vasculitisfoundation.org/kawasakidisease
    http://www.mayoclinic.com/health/kawasaki-disease/DS00576

  Microscopic polyangiitis

    http://www.vasculitisfoundation.org/microscopicpolyangiitis
    http://vasculitis.med.jhu.edu/typesof/polyangiitis.html

  Polyarteritis nodosa

    http://www.vasculitisfoundation.org/polyarteritisnodosa

    http://vasculitis.med.jhu.edu/typesof/polyarteritis.html

  Polymyalgia Rheumatica

    http://www.vasculitisfoundation.org/polymyalgiarheumatica
    http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441
    http://vasculitis.med.jhu.edu/typesof/polymyalgia.html

  Rheumatoid Vasculitis

    http://www.vasculitisfoundation.org/rheumatoidvasculitis
    http://vasculitis.med.jhu.edu/typesof/rheumatoid.html

  Takayasu's arteritis

    http://www.vasculitisfoundation.org/takayasusarteritis
    http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833
    http://vasculitis.med.jhu.edu/typesof/wegeners.html

  Wegener's granulomatosis

    http://www.vasculitisfoundation.org/wegenersgranulomatosis
    http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833
    http://vasculitis.med.jhu.edu/typesof/wegeners.html
    http://www.clevelandclinic.org/arthritis/treat/facts/wegener.htm

  Vasculitis Booklets/brochures/tutorial

    Arthritis Research Campaign - U.K. - Vasculitis

      http://www.arc.org.uk/arthinfo/patpubs/6047/6047.asp

    Cleveland Clinic's Vasculitis Brochure

      http://www.clevelandclinic.org/arthritis/vasculitis/Vasculitis Center Brochure 2005 FINAL.pdf

    Living with Vasculitis

      http://webrheum.bham.ac.uk/Vasculitis/Booklet/LivingWithVasculitis.pdf

    U.K. National Health Service Brochure - Wegener's granulomatosis

      http://www.wegenersgranulomatosis.net/vasculitis-NHS-Patient-brochure.pdf

    University of North Carolina –

      http://www.unckidneycenter.org/vasculitis_brochure.pdf

    U.S. National Library of Medicine - Patient Education Institute

  http://www.nlm.nih.gov/medlineplus/tutorials/vasculitis/htm/index.htm  English

  http://www.nlm.nih.gov/medlineplus/spanish/tutorials/vasculitisspanish/htm/index.htm  Spanish 

 Vasculitis Centers

  Addenbrooke's Hospital - Cambridge, U.K.

    http://www.addenbrookes.org.uk/serv/clin/renal/services/vasculitis_lupus.html  

   University of Alabama-Birmingham

    http://www.health.uab.edu/default.aspx?pid=82347

  Boston University - Vasculitis Center     (Boston, Massachusetts)

    http://rarediseasesnetwork.epi.usf.edu/vcrc/centers/boston.htm

  Cleveland Clinic Center for Vasculitis Research and Treatment [pg 4]

    http://www.clevelandclinic.org/arthritis/vasculitis/default.htm

  Emory Vasculitis clinic-Atlanta

    http://www.medicine.emory.edu/immuno/clinic/what_is_vasculitis.cfm

  Johns Hopkins Vasculitis Research & Care Center

    http://vasculitis.med.jhu.edu/
    http://vasculitis.med.jhu.edu/resources/forms.htm

  Mayo Clinic - Rochester, MN

    http://www.mayo.edu/  (Contact-Dr. Ulrich Specks)

  Mt. Sinai Hospital, Toronto, Canada -  Rebecca MacDonald Centre for Arthritis & Autoimmune Disease

    https://www.mtsinai.on.ca/rmcad/contact.htm

  Pennsylvania State University Vasculitis Center

    http://www.hmc.psu.edu/rheumatology/aservices/vasculitis.htm

  Univ. of Utah [Select "Rheumatology"� and then Dr. Curry L. Koening M.D.,M.S.

    http://healthcare.utah.edu/FindADoc/index.cfm

Clinical Reasearch Consortium

    http://rarediseasesnetwork.epi.usf.edu/vcrc/index.htm

European Vasculitis Study Group - Progress Report

    http://www.vasculitis.org/progress.htm

Mayo Foundation

    http://www.mayoclinic.com/health/vasculitis/DS00513

MedlinePlus

    http://www.nlm.nih.gov/medlineplus/vasculitis.html

Overview

    http://www.clevelandclinic.org/arthritis/vasculitis/default.htm Cleveland Clinic Center for Vasculitis
    http://vasculitis.med.jhu.edu/index.html Johns Hopkins
    http://www.mayoclinic.com/health/vasculitis/DS00513 Mayo Clinic
    http://patients.uptodate.com/topic.asp?file=arth_rhe/4492 UpToDate
    http://www.nlm.nih.gov/medlineplus/vasculitis.html National Library of Medicine

Patient Support

    http://www.vasculitisfoundation.org/support  Vasculitis Foundation
    http://health.dir.groups.yahoo.com/dir/Health___Wellness Yahoo groups search
    http://www.wegenersgranulomatosis.net/Vasculitis_and_Autoimmune_E-mail_Groups.html
    http://www.wegenersgranulomatosis.net/Email_Guidelines.html

 Guidelines for email and message board posts
    http://www.wegenersgranulomatosis.net/Email for new AV patient.doc
    http://searchresults.myspace.com/index.cfm?fuseaction=groups.ListGroups&categoryID=17  MySpace
    http://www.facebook.com/  You have to be a "friend"� to AV patient(s)
    http://www.churgychums.co.nr  Web-based chat for Churg-Strauss syndrome patients
    http://www.pansupport.org  Polyarteritis nodosa patients.  Click on "JOIN"�, then click on "Chat"

 PowerPoint Presentations

    http://www.wegenersgranulomatosis.net/Vasculitis Primer.ppt

Reading List

    http://www.wegenersgranulomatosis.net/AV_Reading_List.html

Research Consortium

    http://www.rarediseasesnetwork.org/vcrc/index.htm  Eight centers studying six vasculitides

Tutorial

    http://www.nlm.nih.gov/medlineplus/tutorials/vasculitis/htm/index.htm (English)
    http://www.nlm.nih.gov/medlineplus/spanish/tutorials/vasculitisspanish/htm/index.htm (Spanish)

Vasculitis Foundation - Patient Support

    http://www.vasculitisfoundation.org
    http://www.vasculitisfoundation.org/donate Donations

WGA Association (Replaced by Vasculitis Foundation)

    http://www.wgassociation.org

 

THE FOLLOWING ARE FILES FROM MY WEB SITE AT VASCULITIS-PATIENT

FILE NAME	SIZE: KB	SUBJECT
Abbreviations_&_Acronyms.htm	224	Three sections of medical abbrev. and acronyms
Advances_in_therapy-wegener's.pdf	452	2006-Remission/Maintenance/States/States/Definitions
ANCA-Detection.htm	64	Why and How to test for ANCA
ANCA-diagnosing.html	32	Graphic on ANCA interpretation
ANCA-disease_associations.html	4	Table of vasculitides vs. ANCA test results
ANCA Test Interpretation.gif	12	ANCA Interpretation GIF
# Antifungal handout.pdf	296	List of antifungal medications
# Anti-Inflammatory Foods.html	32	Listing of foods, both good and less good- Cyndi Olsen’s material as edited.
Autoimmune Vasculitis Recommended Reading List	20	Vasculitis Foundation List with additions
Avascular Necrosis and Glucocorticoid Use.html	56	Femoral head damage
# Baseline Tests.html	36	Medical Tests when first diagnosed
# Biological Drugs in Development.html	36	Most not commercially available
Biphosphonate Tabel-2004.html	8	2nd and 3rd generation biphosphonates
Blood_Vessel_Damage.jpg	8	Graphic X-section of 3 damaged vessels
# Cytoxan_and_Fertility.htm	28	Discusses effects of Cytoxan and preserving fertility
Dealing_with_people_in_pain.html	8	Suggestions
DEI_SCORE.html	8	Disease Extent Index
Diagnosing_Autoimmune_Diseases.html	56	AARDA Diagnostic guide for autoimmune diseases
Disease_&_Dental Health.html	24	Gum and teeth disease can have systemic affects
# Email for new AV patient.doc	48	Introduction to AVs for patients/carers
# Email for new WG patient.doc	52	Introduction for WG for patients/carers
# Email_Guidelines.html	16	Good manners for email groups and message boards
# Fructose_Dangers.html	36	Fructose is a sugar common in fruits.  Cane sugar is half fructose/half sucrose.  High fructose corn syrup (HFCS) is the product of extensive chemical processing
Hemapheresis Guidelines.pdf	204	Plasmapheresis/Hemapheresis guidelines
Herbs_&_Alternative Meds.html	108	Links for information on herbs and alternative medicine
Hospital-Stay Alive.html	48	How to leave hospital alive
ImageBOU.JPG	16	Illustration of usual WG targets
ImageRJN.JPG	28	Illustration of blood vessel sizes vs AV
Immunosuppressives - the first 50 years.html	8	First 50 years and look forward
Immune System Ablation.html	12	Immune Ablation as therapy for AV
Inflammations_of_the_Eye.html	8	Brief description of some conditions
IVIgp-Off Label Use	120	11 Slides in pdf format on 3 pages
Lab Conversion Table.html	104	Converts U.S. to Standard International
# List_of_Slide_Shows.html	24	Vasculitis and WG related
Medical_Information_Bureau.html	8	Medical Records for U.S. patients
# Medical-Search.html	36	Finding medical information via internet & other ways
Osteroporosis_Update.htmlÂ	24	Current Osteoporosis Therapy (2004)
Patient_Fact_Sheet.html	20	Tips to prevent medical errors
# Peripheral Neuropathy.htm	8	Treatment of P.N. Edited from a D.O.
Pharmalogical Therrapy – Wegener’s	780	WG Medications 2006 Article
# Questions_&_Background.html	44	76 questions about vasculitis & why ask
Recommended Reading List	16	VF list of books on vasculitis and autoimmune diseases
Rocognizing_a _Stroke.html	4	Simple 3 step test
# Side_Effects.html	41	Cytoxan and prednisone side effects - Compiled and edited by patient
# Students & Medications.doc	996	Tri-fold brochure on effects of medication on learning
Take-Along Medical Info.htm	12	Info. an AV patient should carry
Talking_About_Symptoms.html	12	Some suggestions on how to
Testing & reporting ANCA	96	Authoritative paper on interpreting ANCA results
# Tips to prevent medical errors.html	24	From National Institute of Medicine (edited)
# Vasculitis_and_autoimmune_Email groups.html	24	Partial List of  AI and AV Email Groups
Vasculitis - Causes.html	8	Edited from Clin Exp Rheumatol.  2006
Vasculitis Distributions.gif	8	Types of Autoimmune by vessel size-Falk et al
# Vasculitis_and_WG_Tests.html	84	Tests in SAV/WG – Seven Sections
# Vasculitis Primer.ppt	1.5 MB	Download forty-six slides for general public
# Vasculitis Slide Presentations.html	20	List of Vasculitis related slide shows
Vasculitis-NHS-Patient-brochure.pdfÂ	268	Great Ormond Street Hospital – 13 pages.
Vasculitis-URLS.html	120	Vasculitis & WG Related Web Pages
VF Brochure.pdf	70	Vasculitis Foundation English language brochure
VF International Consultants.html	8	Vasculitis Foundation Consultants
VF_Recommended_Reading_List.html	16	Vasculitis Foundation Reading List
# WG_&_AATD.html	24	Alpha-1 anti-trypsin deficiency (AATD)
WG Powerpoint-1999-37 slides.pdf	1.6 MB	Slide show on WG
Your_Medical_Records.html	12	Importance of having your own records

THIS SITE

• Intent
  • To assist vasculitis patients in getting early diagnoses, effective treatments, and to advise of patient, organization, and scientific resources concerning vasculitis.
• Sources Used
  • The following information is derived from a variety of sources over some ten+ years and is not to be considered as medical advice, but merely the opinions or experiences or findings of the writer who is not a physician and has no medical training.
  • Much comes from Medline abstracts and medical journal articles on vasculitis.  Some is from autoimmune vasculitis patients and carers, some from newsgroups,  internet web pages, etc. that also deal with vasculitis.
  • The compiler has attempted to use only recent valid medical information regarding vasculitis, but cannot guarantee the validity nor the currency in every case
• Limitations
  • No medical decisions should be made on the basis of information on this web page or on associated linked documents and web pages unless those are from a recognized medical professional or professional medical publication.
  • Limits to this web page concerning vasculitis:
    • The author/compiler/editor of this web page and related pages has had NO medical training.
    • Only autoimmune vasculitides will be considered, not hypersensitivity vasculitis nor vasculitis as a result of an allergic reaction to medication or vaccine..
    • Most sections apply to most autoimmune vasculitides.
      • One refers specifically to Wegener’s granulomatosis.
• Terminology
  • Some abbreviations and equivalencies are:
    • Hereafter, “autoimmune vasculitis” may be abbreviated “AV” or “AVs” for plural.
    • The term “Prednisone” is sometimes used where it or a similar glucocorticoid might be prescribed to treat vasculitis.
    • “Immunosuppressives” used to  treat vasculitis are sometimes abbreviated “ISs”.
• Updates
  • This update was on June 1, 2009 and is a complete rewrite of the former web page at http://www.wegenersgranulomatosis.net that also dealt with vasculitis.
• Files & links – Vasculitis related.
  • Click here to view a web page listing all the links and files from this page.
• Tables & Figures – Vasculitis related
  • Click here to view a listing of the tables and figures in this web page.
• Disclaimer
  • ALL MEDICAL QUESTIONS, SYMPTOMS, CONCERNS AND PROBLEMS SHOULD BE DIRECTED TO APROPRIATE LICENSED MEDICAL PROFESSIONALS.
  • The writer/editor/compiler does not vouch for the accuracy, completeness, nor applicability of the information included on this site to any person, whether a vasculitis patient or otherwise. 

This website and all content - © Copyright 2009, Bruce Macdonald. All Rights Reserved.
Website by Deerpath Web Design - Web Design for West Michigan

Compilations, Observations & Suggestions by a Vasculitis Patient This web page hosted courtesy of Andrew MacLean at www.andrewmaclean.com Please use the SITE PLAN for advanced navigation if slide-out menus do not appear.

See Also: Search Vasculitis-Patient.com

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