Last update - 9 August 2008
(Please notify blades49456@sbcglobal.net of non-working web pages listed below)
|
5. GETTING IN
CONTACT -
MESSAGE BOARDS, LIVE CHAT AND WEB PAGES |
| 16. CLINICAL TRIAL INFORMATION |
| 17. SPECIAL
EDUCATIONAL NEEDS |
1. WEGENER'S GRANULOMATOSIS WEB PAGES
Vasculitis
Foundation, International Web
Page (The best place to
start)
http://www.vasculitisfoundation.org
or http://www.wgassociation.org
Cleveland
Clinic - Wegener's granulomatosis - Medicine Index
http://www.clevelandclinicmeded.com/diseasemanagement/rheumatology/wg/wg.htm
German
Patient's WG page
http://www.vaskulitis.org
Mike Clay's Web
Pages
http://www.weareb.org/WG
http://www.weareb.org/mailman/listinfo/wg-discussion (WG e-mail group)
http://www.weareb.org/WG/chat.jsp
(Info
on Internet Relay Chat)
http://www.weareb.org/WG/help.html
(Mailing
list hints and tips)
New Zealand
WG Web Page
(Under
Construction-come back later)
http://canterbury.cyberplace.org.nz/environment/wgsupportgroup/
Nowegian
Wegener's Granulomatosis Page
http://home.c2i.net/flatens/index.html
Wegener's
Granulomatosis - Audio MP3 Recording
http://www.jon-strickland.com/downloads/Jon-Strickland-Vasculitis.mp3
Wegener's
Granulomatosis - Therapeutics 2006
http://www.medscape.com/viewarticle/529310_1
Wegener's
Granulomatosis - emedicine.com
http://www.emedicine.com/med/topic2401.htm
(Click here to return to Index)
2. RELATED VASCULITIS & WG WEB SITES
Akron
Children's Hospital Vasculitis Clinic
https://www.akronchildrens.org/cms/site/97e4e21057a40be6/index.html
Autoimmune
Blood Test Chart - Univ. of Washington - Immunology [Currently not
available]
http://depts.washington.edu/labweb/dept/div/imm/refchart.html
Autoimmune
Diseases - NIH
http://www.niaid.nih.gov/dait/pdf/ADCC_Report.pdf
Autoimmunity & Nervous System (Involvement of vagus
nerve in inflammation cascade)
http://www.eurekalert.org/pub_releases/2007-10/nsij-sda102307.php
Bactrim Desensitization Protocol
http://aidsetc.org/aetc/pdf/cm-1001_sulfa.pdf
German Vasculitis
Support Group
http://vaskulitis.org
Immune System Description
http://www.merck.com/mmhe/sec16/ch183/ch183a.html#sec16-ch183-ch183a-10
Immunology - Molecular
http://www.mi.interhealth.info/
Management
of Herpes
Zoster (Shingles)
http://www.aafp.org/afp/20000415/2437.html
Nephrology
& Dialysis
http://kidney.niddk.nih.gov/kudiseases/pubs/hemodialysis/
The
Netherlands Vasculitis Page
http://www.vasculitis.nl
Plasma
Exchange
http://www.mdausa.org/publications/fa-plasmaph.html
http://arar.essortment.com/plasmapheresis_rdqq.htm (Risks of apheresis)
http://www.regence.com/trgmedpol/medicine/med05.html
Peripheral
Neuropathy
http://www.medicinenet.com/Peripheral_Neuropathy/article.htm
Vasculitis -
Self-help booklet (British)
http://www.lupusuk.com/selfhelpinvasculitis.asp
Vasculitis -
Addenbrooke's Hospital, U.K.
http://www.addenbrookes.nhs.uk/serv/clin/med/vasculitis1.html
Vasculitis,
Amyloidosis, Immunodeficiency
http://www.pathguy.com/lectures/imm-iii.htm (With Drawings,
scroll down)
Vasculitis - Great
Ormand Street Hospital -
U.K.
http://www.gosh.nhs.uk/factsheets/families/F040127/vasculitis.pdf
(Web Page)
http://www.ich.ucl.ac.uk/factsheets/families/F040127/
(Brochure)
Vasculitis -
MedlinePlus tutorial on vasculitis
http://www.nlm.nih.gov/medlineplus/tutorials/vasculitis/htm/index.htm
(Click here to return to Index)
3. MEDICAL RESOURCES ON-LINE
Advocacy for Patients ACR Booket
on Vasculitis
http://www.arc.org.uk/about_arth/booklets/6047/6047.htm
American
College of Rheumatology-Patient information on autoimmune diseases
http://rheumatology.org/public/factsheets/index.asp?aud=pat&CFID=4274348&CFTOKEN=59301871#2
Accessing
Health Care in Europe
http://www.eccdublin.ie/publications/leaflets/subject_guides/health.pdf
http://www.oasis.gov.ie/health/hospitals/hospital_treatment_abroad.html
Angel Flight
- air service at no cost for patients
http://www.angelflightmidatlantic.org/
(MidAtlantid U.S.)
http://www.angelflightne.org/
(Northeast U.S.)
http://www.angelflight.org/
(West U.S.)
Autoimmune
Diseases (On-line, open access journal)
http://www.jautoimdis.com/content/pdf/1740-2557-1-1.pdf
Autoimmune
Glossary
http://pre-pg.blogspot.com/2007/07/glossary-of-immunology.html
Best Doctors
- Online Brochure
http://www.bestdoctors.com/en/default.htm
Best
Hospitals - U.S. News and World Report
http://www.usnews.com/usnews/nycu/health/hosptl/tophosp.htm
Biology Pages - Searchable
http://biology-pages.info/
Diagnostic Criteria
http://www.medicalcriteria.com
European Vasculitis Study Group (EUVAS)
http://www.vasculitis.org
Groupe Francais d'Etude de Vascularities
http://www.vascularite.com
Guidelines to Clinical Practice
http://www.guidelines.gov/
How
to check out your physician
http://www.quackwatch.org/04ConsumerEducation/QA/mdcheck.html
How Your
Immune System Works
http://www.howstuffworks.com/immune-system.htm/printable
Immunology
and Immune Defense against Microbial Pathogens
http://www.bact.wisc.edu/Bact303/Immunology
Insurance Codes (Used to code procedures and conditions-ICD9)
http://icd9cm.chrisendres.com/
International
Network for the Study of
Systemic Vasculitides
http://www2.ccf.org/inssys/INSSYSsites.htm
http://www2.ccf.org/inssys/addressllist.htm
(Click here to return to Index)
4. GETTING CONNECTED - E-MAIL GROUPS
http://www.weareb.org/mailman/listinfo/wg-discussion
wg-discussion@weareb.org
(Wegener's granulomatosis, non-moderated)
http://groups.yahoo.com
Search for Yahoo Groups
http://www.medportal.com/dejanews.html
(Search
Google for Medical Newsgroups)
(Click here to return to Index)
5. GETTING
CONNECTED - MES'G. BOARDS/LIVE CHAT/WEB PAGES
Brian's WG Web Page
with Live
Chat
(Live chat requires JAVA enabled)
http://www.wegenersnet.org/index.jsp
CaringBridge
- a way to communicate with others with similar afflictions.
http://www.caringbridge.org/about.htm
Johns
Hopkins Autoimmune Message Board (No longer available as of 20 April 2008)
http://pathology.jhu.edu/autoimmune_chat/
Lupus and
Autoimmune Message
Board
(Rarely
has messages pertinant
http://members4.boardhost.com/sblrd/
to Wegener's Granulomatosis)
WG Live Chat
on Monday's 9 PM Eastern
Time
(Requires
IRC client program
http://www.weareb.org/WG/chat.jsp
such as mIRC or IRCLE or use newnet.net)
(Click here to return to Index)
6. PERSONAL WG WEB PAGES
Arnie's WG
Web Page
http://arniemarge.tripod.com/arnieepistle.html
Sandra
Baruta's Web Page on WG
http://www.angelfire.com/ga/wegeners/
(Last
updated 22 Feb. 1999)
(Click here to return to Index)
American Society of Health System Pharmacists -The consumer siteCyclophospamide (Cytoxan)
http://www.safemedication.com
Drug Interactions - checking for (MacIntosh users may only see a limited list of medications)
http://www.drugdigest.org/DD/Interaction/ChooseDrugshtml
ExpressScripts (a big pharmacy benefits manager) - The consumer site
http;//www.drugdigest.org
Federal Drug Administration (U.S.)
http://www.fda.gov/cder/consumerinfo
Herbs and supplements - Independent testing
http://www.consumerlab.com/
Immunomodulatory xenbiotics/Immunomodulators/immune response modifiers.
http://focosi2.altervista.org/immunomodulatory.html
Institute for Safe Medication Practices
http://www.ismp.org
Medical Necessity for Rituximab (Rituxan)
http://www.omsusa.org/pranzatelli-insurance-Rituximab.htm
Mesna
http://www.patient.co.uk/showdoc/30003790/
Methotrexate
http://www.aafp.org/afp/20001001/1607.html
National Library of Medicine - Chose "Medications"
http://www.medlineplus.gov
Pharmaceuticals (Links to Drugs and Medications)
http://www.pharmacychoice.com/resources/drugdata.cfm
Physicians Desktop Reference Ad supported site (Thompson Healthcare)
http://www.drugs.com
Prednisone and other glucocorticoids
http://www.uspharmacist.com/NewLook/CE/glucocort/lesson.htm
Prescription Drug Monographs - Keyword Search
http://www.rxlist.com (Drug Information)
http://www.cancer-info.com/rituxan_info.htm (Rituximab/MabThera/Rituxan)
Rituximabe (MabThera) - Patient Information
http://groups.yahoo.com/ group/wgdiscussi on/files/ Patient%20Info% 20on%20Rituximab
Sharp Foundation and San Diego Cardiac Center - Schedule
http://www.mypillbox.org
Steroids - Use & Abuse in Rheumatology - Arthritis Research Campaign - 2004
http://www.arc.org.uk/about_arth/med_reports/series3/pp/6338/6338.htm
WebMD (Search Drug and Herb section)
http://my.webmd.com/medical_information/drug_and_herb/default.htm
Worst Pills Web Page
http://www.worstpills.org
(Click here to return to Index)
8. FINANCIAL ASSISTANCE FOR MEDICATIONS
Almost all of the drug companies have programs to make free medications available to patients under so-called "Patient Assistance Programs".
Each company is different on their specific requirements, most are based on financial need. Some manufacturere's require only a letter from the patient's physician. Others require substantial back-up information on rather lengthy forms.
Some will mail the medication to your home, more commonly to your physician's office, or sometimes to your pharmacy with a drug card to be used when picking up prescriptions.
All medications supplied under a P.A. program require a prescription and most require your physicans signature.
Physician's offices do considerable paper work for patient assistance programs for patients. This is time comsuming for the office staff. Preparing the paper work is a gift. The physician receives no compensation to reimburse the cost of assisting the patient.
Because it is a free service by the physician and his staff, the patient needs to take responsibility of notifying the office when the next renewal needs to be submitted. Usually it is needed every three months.
Some applications can be done on the internet. Many applications must be on forms from the drug company although some of these may be printable off the internet. If possible, the patient should obtain the forms from the manufacturer's web page or via mail to save the physician's office unnecessary work.
Accessing
Patient Assistance
Programs
http://www.rxassist.org/
American
College of Rheumatology - Patient Assistance Programs
http://www.rheumatology.org/public/acrast.asp?aud=pat
Directory of
Patient Assistance Programs
http://www.helpingpatients.org/
The Financial Assistance Network
http://www.financialassistancenetwork.org/prescrip.htm
Government.
Accounting Office Report on P.A. Programs
http://www.elderweb.com/default.php3?PageID=2303
Healthcarecoach
http://www.healthcarecoach.com/resources/index.php?view=detail&id=85&node=23
Manufacturer's Patient Assistance Programs
http://www.needymeds.com
Medication ^ health insurance resources - Dr. Koop's web page
http://www.kspope.com/medications/index.php
Nat'l.
Organization for Rare
Diseases - P.A. Programs
http://www.rarediseases.org/other/other.htm
Our Chronic
Pain Mission
http://www.cpmission.com/gallery.html
Partnership
for Prescriptions
http://www.pparx.org/
Patient
Assistance for Psychologically Active Drugs
http://www.nami.org/helpline/freemed.htm
(Click
here to return to Index)
9. SOCIAL SECURITY DISABILITY
There
may be better recovery if you can prove your disability was "work
related". You
might want to consult with a lawyer to consider filing
for "third-party"
Benefits
Checkup - U.S. National Council on Aging
http://www.benefitscheckup.org/
Disability
Secrets - Tips, Secrets, & Advice
http://www.disabilitysecrets.com/
Private
Assistance Filing Disability
Claims
http://www.allsup.com
Federal
Poverty Guidelines
U.S. 2002
guidelines to determine eligibility for certain programs
http://www.rxassist.org/federal.htm
SSD
Assistance
http://www.ssa.gov/disabilityformhelp/
http://www.ssdisability.net
http://www.ssdisability.net/medical.html
http://www.ssdisability.net/arthritis.html
http://www.4socialsecuritydisability.com/
SSI
Disability Qualifications
http://www.ssa.gov/disability/professionals/bluebook/
(For all
disabilities)
http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm
http://www.ssa.gov/disability/professionals/bluebook/114.00-Immune-Childhood.htm
Social
Secruity On-line Forms
http://www.ssa.gov/online/forms.html
(Click here to return to Index)
10. HOW TO TALK TO YOUR PHYSICIAN
Be assertive and take an active role to improve your health care.
Good communication makes for good medicine)
http://elfstrom.com/arthritis/appointments.html
Be Your Own Advocate
http://www.webmd.com/healthy-aging/guide/be-your-own-health-advocate
Columbia
Medical
School
(New York City)
http://cpmcnet.columbia.edu/
Duke
University Rheumatology
Clinic
(Chapel Hill, North Carolina)
http://www.dukehealth.org/Services/Rheumatology/index?search_highlight=rheumatology_and_immunology
Emory
University Vasculitis Clinic
http://medicine.emory.edu/immuno/clinic/what_is_vasculitis.cfm
Massachusetts
General
Hospital
(Harvard Univ.,
Boston, MA)
http://www.mgh.harvard.edu/
Mayo Medical
Center
(Rochester,
Minnesota)
http://www.mayo.edu
Mount Sinai
Hospital
(Toronto,
Ontario, Canada)
https://www.mtsinai.on.ca/rmcad/contact.htm
National
Jewish Medical and Research
Center (Denver, Colorado)
http://www.njc.org/
Rheuma-Klinik Bad Bramstedt
http://www.rheuma-zentrum.de
Rheumatology
and Autoimmune
Clinic
(Toronto, Canads)
Mount Sinai
Hospital - Rebecca MacDonald Centre
http://www.mtsinai.on.ca/rmcad/Default.htm
http://www.mtsinai.on.ca/Rheumatology/default.htm
Vasculitis
Service and Vasculitis
Clinic
(Cambridge, U.K.)
http://www.addenbrookes.nhs.uk/serv/clin/med/vasculitis1.html
University
of Alabama Hospital - Vasculitis
Clinic
(Birmingham,
Alabama)
http://www.health.uab.edu/12247/
University
of
Birmingham (Birmingham, U.K.)
http://webrheum.bham.ac.uk/vasculitis/
University of
California - Los Angeles, California
http://healthcare.ucla.edu/shared/contact-us-hc
http://rheumatology.med.ucla.edu
(Click here to return to Index)
12. RELATED AUTOIMMUNE DISEASE WEB PAGES
Anatomy of
the Immune System
http://www-micro.msb.le.ac.uk/MBChB/2b.html
Apheresis
(Blood-cleansing)
http://www.baxter.com/services/professional_education/iv_therapy_ce/apheresis/apheresis.html
Autoimmune
Diseases - Nat'l.
Institutes of Health - NIAID
http://www.niaid.nih.gov/publications/autoimmune/autoimmune.htm
Autoimmune
Diseases - Johns Hopkins
http://autoimmune.pathology.jhmi.edu/whatisautoimmunity.cfm
Avascular
Necrosis
http://www.niams.nih.gov/hi/topics/avascular_necrosis/
Bactrim
(Septra) Desensitization
http://www.projinf.org/fs/pcpproph.html#8day
Breast
Abnormalities - Systemic Diseases
http://radiographics.rsnajnls.org/cgi/content/full/19/suppl_1/S11?maxtoshow=#SEC2
Central
Nervous System (CNS)
Vasculitis
http://vasculitis.med.jhu.edu/typesof/cns.html
http://www.cnsv.net/
C-Reactive
Protein Test
http://www.clevelandclinic.org/heartcenter/pub/guide/tests/labtests/crp.htm
http://uwcme.org/courses/rheumatology/rheumlab/crp.html
Dental
Infection and Disease
http://www.rheumatic.org/teeth.htm
http://www.aafp.org/afp/980201ap/taubert.html
EULAR -
European League against Rheumatism
http://www.eular.org/
Immunoglobulin - Warning
http://www.fda.gov/medwatch/safety/1998/igiv.htm
Immune
System - NIAID Net News
http://www.niaid.nih.gov/final/immun/immun.htm
Immune
System -
NIH/NCR tutorial (Excellent, with illustrations in color)
http://press2.nci.nih.gov/sciencebehind/immune/immune00.htm
Immunology -
General
http://www.cehs.siu.edu/fix/medmicro/genimm.htm
Leukocytoclastic Vasculitis
http://www.emedicine.com/derm/topic185.htm
Living with
Vasculitis Booklet - University of Birmingham
(Requires
Adobe Acrobat)
http://webrheum.bham.ac.uk/Vasculitis/Booklet/LivingWithVasculitis.pdf
Mixed
Connective Tissue Disease
http://www.AboutArthritis.com/script/main/art.asp?articlekey=412
Osteoporosis
http://www.nos.org.uk/
http://www.osteoporosis.ca/
(English
and French)
http://www.nlm.nih.gov/medlineplus/osteoporosis.html
Peripheral
neuropathy - Managing the pain, frustration
http://www.ninds.nih.gov/health_and_medical/disorders/peripheralneuropathy_doc.htm
http://www.projinf.org/fs/sneuro.html
Pitfalls in
Diagnosis and Treatment of Systemic Vasculitides
http://www.takayasu.org/Doc14.PDF
(Requires
Adobe Acrobat)
Relapsing
Polychondiritis
http://www.bcm.tmc.edu/oto/grand/111794.html
Rhuema21st
- Physicians Info
on Latest News for Rheumatologists.
http://www.rheuma21st.com/search_index.html
Rheumatology
Web
http://www.rheumatologyweb.com/
Staphilococcus Aureus
http://www.bact.wisc.edu/microtextbook/disease/staph.html
Stem Cell
Transplant to Treat Autoimmune Diseases - A fairly detailed study
http://www.nature.com/nature/journal/v435/n7042/full/nature03728.html
Understanding Autoimmune Diseases
http://www.niaid.nih.gov/publications/autoimmune/autoimmune.htm#preface
Understanding the immune system - National Cancer Institute
http://press2.nci.nih.gov/sciencebehind/immune/immune00.htm
Vasculitis
Center - Johns Hopkins Univ.
http://vasculitis.med.jhu.edu/
Vasculitis - CNN
Health Library
http://www.cnn.com/HEALTH/library/DS/00513.html
Vasculitis -
Difficulties with ACR Standards
http://www.acponline.org/journals/annals/01sep98/acrclass.htm
Vasculitis -
Mayo Clinic
http://www.mayoclinic.com/health/vasculitis/DS00513
Vasculitis -
Power Point Presentation (Adobe Acrobat .pdf file) (Not up-to-date, no "biologicals")
http://intmedweb.wfubmc.edu/download/vasculitis.pdf
Vasculitic
Diseases - Power Point Presentation (Adobe Acrobat.pdf
file) (Black and white)
http://www.kcl.ac.uk/depsta/biomedical/ancehubi/ja3271/2004-vasculitis.pdf
Vasculitis
Diseases - HTML Slide presentation (Same as above but in color)
http://www.kcl.ac.uk/depsta/biomedical/ancehubi/ja3271/2004-vasculitis.html
Vasculitis -
European Union Vasculitis Study Group (EUVAS)
http://www.vasculitis.org/
Vasculitis
EUVAS
- Slide Show - Brief review of "Chapel Hill Nomenclature"
http://www.vasculitis.org/slideshows/sld001.htm
Vasculitis,
Systemic - Pitfalls in Diagnosis and Treatment
http://www.takayasu.org/Doc14.PDF
(Click here to return to Index)
ANCA
Interpretation
Frequency Of cANCA, pANCA,
Anti-MPO &
Anti-PR3 In Vasculitis
http://dpalm.med.uth.tmc.edu/clinicalservices/Interps/anca.HTML
ANCA Tests:
Comparison
of different tests for detection of antineutrophil cytoplasmic
antibodies
http://www.diagnostics.nu/upload/AUTOIMMUNITY/Elias-Journal/WEB_EJE_2_03_Csernok.pdf
ANCA Tests - Methods and Interpretation
http://www.specialtylabs.com/books/display.asp?id=47
Apheresis including plasmapheresis
http://www.baxter.com/services/professional_education/iv_therapy_ce/apheresis/apheresis.html
Blood Test
Tables
- Normal values
http://www.bloodbook.com/ranges.html
Blood Test Table
- Understanding your CBC test
http://www.aidsmeds.com/lessons/CBCtest.htm
Corticotrophin-Releasing Hormone testing (Can be useful to
determine if steroid discontinuance is safe)
http://www.ncbi.nlm.nih.gov/pubmed/10612488?dopt=Abstract
ESR/SED
(Erythrocyte sedimentation rate)
http://www.healthy.net/library/books/textbook/Section2/esr.pdf
ELISA
(Enzyme-Linked Immunosorbent Assay)
http://www.uq.edu.au/vdu/ELISA.htm
How To Read
Laboratory Tests
Includes table of
normal values for blood tests
http://ighawaii.com/naturally/newsletter/lab.html
Lab Test
Common for Lupus
http://www.mtio.com/lupus/lfalt1.htm
Lab Tests
On-Line:
Wonderful World of Tests - Links to
various on-line lab test information
http://www.labtestsonline.org/index.html
Lab Test
- Visual Algorithm - Vasculitis
http://www.arupconsult.com/Algorithms/VasculitisAdults.pdf
http://www.arupconsult.com/Algorithms/VasculitisChildren.pdf
Radioagraphic Tests for WG -
Scroll down to Sections 4-9
Thoracic Imaging of Wegener's
Granulomatosis
http://www.emedicine.com/radio/topic743.htm
Systemic Rheumatic Diseases - Laboratory Testing