View Full Version : Links to Wegener's Granulomatosis Resources

08-09-2008, 07:29 PM
Post links here in this thread to any WG resources that you find. These could be informatoinal websites, discussion groups, blogs etc etc.

08-09-2008, 07:32 PM
A great WG discussion group that I'm a member of. I believe Marcy may also be a member: wgdiscussion : WG General Discussion (http://health.groups.yahoo.com/group/wgdiscussion/)

My personal blog: Wegener's Granulomatosis, Wegener's Disease Blog (http://www.andrewmaclean.net)

Vasculitis Foundation Website: Front Page | Vasculitis Foundation (http://www.vasculitisfoundation.org/)

A peachy little WG Handbook: http://www.vasculitis.org/download/WG.pdf

12-17-2008, 06:30 AM
Sangye's Blog: Sweet Not Always (http://sweetnotalways.blogspot.com/)

12-18-2008, 06:47 AM
Twice's Blog: The Rognon (http://therognon.livejournal.com/)

02-18-2009, 02:44 PM
i have found that a group on www.wegenersnet.org (http://www.wegenersnet.org) is very supportive an informative. not docs but people like you and me that are weggies and are living and dealing with it daily. lots of great info.:)

04-16-2010, 04:24 AM
Welcome to Tracheal Stenosis (http://www.tracheal-stenosis.com) for those with Subglottic Stenosis. :-)

04-23-2010, 12:43 PM
This is very useful: Vasculitis Patient Information (http://www.vasculitis-patient.com/)

06-22-2010, 09:48 AM
WegenersDisease.org : Lists top Wegner's hosptitals, FAQ, news, information regarding medications and treatments.

06-25-2010, 07:00 PM
Copy pasted Sangyes' informative post (lessons learned) here to save trawling for it later.

Other info from Dr Seo:

1) About 35-40% of Weggies never go into remission.

2) People who flare tend to have repeat flares

3) The longest most people are able to stay in remission is 10 yrs.

4) Weggies with kidney-only involvement (even very severe) are easy to get into a solid, lasting remission.

5) Those with sinus involvement have the most difficulty controlling symptoms and disease activity in that area.

6) I asked about a trend I've noticed in our group. Many people with severe kidney (and sometimes lung) involvement who received pheresis seem to have gone into remission faster than others who didn't. He said he thinks it's due more to the ctx/pred they got along with the pheresis. Hitting the disease hard with major ctx and major pred is the best way to get Wegs into a solid remission (versus stringing it along with mtx or other mild treatments). The downside--incredible toxicity and risks of that treatment.

7) Study on using pheresis for moderate disease activity involving kidney and lung will be starting late this year. Pheresis is usually only used for kidney involvement.

There was more... I'm just pulling all this out of my head.

Carly Hedge
07-13-2010, 02:35 PM
Vasculitis Clinical Research Consortium - Take Action (http://rarediseasesnetwork.epi.usf.edu/vcrc/takeaction/studies/WGMPA-5505.htm)

A study that is currently recruiting.

Carly Hedge
07-13-2010, 02:37 PM
Genetic Defect Tied To Autoimmune Diseases - Science News (http://www.sciencenews.org/view/generic/id/60330/title/Genetic_defect_tied_to_autoimmune_diseases)

think its interesting.

08-26-2010, 04:22 AM
Has anyone read the books i can see on Amazon called Eye on the Prize: Fighting past Wegeners Granulomatosis and There must be a reason: My daughters battle with Wegeners granulomatosis...cos there arnt any reviews and are quite expensive...especially when my mum got her arthritis books very cheaply.

08-26-2010, 12:08 PM
Has anyone read the books i can see on Amazon called Eye on the Prize: Fighting past Wegeners Granulomatosis and There must be a reason: My daughters battle with Wegeners granulomatosis...cos there arnt any reviews and are quite expensive...especially when my mum got her arthritis books very cheaply.

I have the EYE on the Prize book written by Candace Ross. She is from my area and was actually one of the first people to contact me when I was diagnosed. Her journey is interesting because of her determination and strength she was able to over come many obstacles that most people would not. She fought and won many battles. She is a wonderful lady.
There is also supposed to be a network library but I can't get into it. Maybe someone else can have better luck. I guess it was started because of the limited info out there and books, videos, whatever are donated and you can "rent" for the price of postage. the link is: pansupportnetwork.org/html/learn/pan.library/library.html

08-27-2010, 04:58 AM
that link isnt working for me...so i'll take that as a reccomendation then? lol.

08-27-2010, 11:34 AM
:confused1:I dunno....I think that link might have been from a few years ago. Maybe it didn't do well and is no longer around.
I did however enjoy reading Eye on the Prize:thumbsup:

08-27-2010, 08:27 PM
well i've just ordered them both so i'll let ya know how i get on! :wink1:

01-24-2011, 05:02 AM
Necrotizing vasculitis is a rare condition that involves inflammation of the blood vessel walls.


Necrotizing vasculitis is common with:

Polyarteritis nodosa (http://www.nlm.nih.gov/medlineplus/ency/article/001438.htm)
Rheumatoid arthritis (http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm)
Scleroderma (http://www.nlm.nih.gov/medlineplus/ency/article/000429.htm)
Systemic lupus erythematosus (http://www.nlm.nih.gov/medlineplus/ency/article/000435.htm)
Wegener's granulomatosis (http://www.nlm.nih.gov/medlineplus/ency/article/000135.htm)

It is very rare in children.
The cause of the inflammation is unknown. It is likely related to autoimmune (http://www.nlm.nih.gov/medlineplus/ency/article/000816.htm) factors. The wall of the blood vessel may scar and thicken, or die (become necrotic (http://www.nlm.nih.gov/medlineplus/ency/article/002266.htm)). The blood vessel may close, interrupting blood flow to the tissues it supplies. The lack of blood flow will cause the tissues to die.
Necrotizing vasculitis may affect any blood vessel in the body. Therefore, it can cause problems with the skin or any of the body's organs.

Fever, chills, fatigue, or weight loss may be the only symptoms at first. However, symptoms may be in almost any part of the body.

Abnormal skin tissue (lesions)

Papules (http://www.nlm.nih.gov/medlineplus/ency/article/003233.htm) (small, solid, and raised lesions)
Red or purple colored
Located on the legs, hands, or other parts of the body

Fingers that change color (http://www.nlm.nih.gov/medlineplus/ency/article/003249.htm) (blue fingers or toes)
Tissue death due to lack of oxygen

Pain or tenderness in the area
Skin redness
Sores (ulcers) that do not heal

Muscles and joints:

Joint pain (http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm)
Leg pain
Muscle contractions
Wasting away of muscles (http://www.nlm.nih.gov/medlineplus/ency/article/003188.htm)

Brain and nervous system:

Pain, numbness (http://www.nlm.nih.gov/medlineplus/ency/article/003206.htm), tingling in an arm, leg, or other body area
Weakness of an arm, leg, or other body area
Pupils that are different sizes
Eyelid drooping
Swallowing difficulty
Speech impairment
Movement difficulty

Other symptoms include:

Abdominal pain (http://www.nlm.nih.gov/medlineplus/ency/article/003120.htm)
Blood in the urine (http://www.nlm.nih.gov/medlineplus/ency/article/003138.htm) or stools (http://www.nlm.nih.gov/medlineplus/ency/article/003130.htm)
Painful menstruation
Hoarseness or changing voice
Symptoms related to damage of the arteries that supply the heart (coronary arteries)

Exams and Tests

The doctor will perform a physical exam. A nervous system (neurological) examination may show signs of nerve damage.
Tests that may be done include:

Biopsy (http://www.nlm.nih.gov/medlineplus/ency/article/003924.htm) of the muscle, organ, tissue, or nerve biopsy (http://www.nlm.nih.gov/medlineplus/ency/article/003928.htm)
Chest x-ray (http://www.nlm.nih.gov/medlineplus/ency/article/003804.htm)
Sedimentation rate (http://www.nlm.nih.gov/medlineplus/ency/article/003638.htm)
Urinalysis (http://www.nlm.nih.gov/medlineplus/ency/article/003579.htm)
Hepatitis (http://www.nlm.nih.gov/medlineplus/ency/article/001154.htm) blood test
Blood test for antibodies against neutrophils (ANCA antibodies)


Corticosteroids (given in low doses) or other drugs that suppress the immune system may reduce inflammation of the blood vessels.
See also:

Henoch-Schonlein purpura (http://www.nlm.nih.gov/medlineplus/ency/article/000425.htm)
Kawasaki disease (http://www.nlm.nih.gov/medlineplus/ency/article/000989.htm)
Polyarteritis nodosa (http://www.nlm.nih.gov/medlineplus/ency/article/001438.htm)

Outlook (Prognosis)

The outcome depends on the location of the vasculitis and the severity of tissue damage.
Possible Complications

Permanent damage to the structure or function of the affected area
Secondary infections (http://www.nlm.nih.gov/medlineplus/ency/article/002300.htm) of necrotic tissues

When to Contact a Medical Professional

Call your health care provider if you have symptoms of necrotizing vasculitis.
Emergency symptoms include:

Changes in pupil size
Loss of function of an arm, leg, or other body part
Speech problems
Swallowing difficulty


There is no known way to prevent this disorder.
Alternative Names

Vasculitis - necrotizing

Cassidy JT. Systemic lupus erythematosus, juvenile dermatomyositis, scleroderma, and vasculitis. In: Firestein GS, Budd RC, Harris Jr. ED, McInnes IB, Ruddy S,eds. Kelley's Textbook of Rheumatology. 8th. Philadelphia, Pa: W. B. Saunders Company; 2008: chap 98.
Update Date: 5/31/2009

Updated by: Mark James Borigini, MD, Rheumatologist in the Washington, DC Metro area. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc

01-24-2011, 05:15 AM
A reference that will help you understand your lab tests and offer email responses to questions about your lab results.

Lab Tests Online: Welcome! (http://www.labtestsonline.org/)

01-24-2011, 08:41 AM
Thanks Drz for the information.

01-29-2011, 06:00 AM
Events listed on Vasculitis web site: Should we post these here on an on going basis?

Upcoming Events | Vasculitis Foundation (http://www.vasculitisfoundation.org/events)

01-29-2011, 06:11 AM
UNC Kidney Center (http://www.unckidneycenter.org/kidneyhealthlibrary/anca.html)

02-05-2011, 04:05 AM
Here's a cool link that Leah posted on Facebook, so I'm stealing it for my blog and also for here. Very interesting representation of what's going on inside. Check out the slideshow AND the animation.

AAV Info || || Home (http://www.ANCAVasculitis.com/index.php)

05-04-2011, 06:34 AM
Another good fact sheet about Wegener's - Wegener's Granulomatosis (http://www.niaid.nih.gov/TOPICS/WEGENERS/Pages/Default.aspx)

05-04-2011, 06:53 PM
I'm looking at setting up a UK based site, after my partner (on here as lili) found out about the cluster of cases here in South Wales. I've only just started looking at links, but have found these so far:

St Thomas' Wegener's Trust (http://wegeners.org.uk/)

Wegener's Granulomatosis Support UK ? Wall | Facebook (http://en-gb.facebook.com/pages/Wegeners-Granulomatosis-Support-UK/174075863730?sk=wall)

Wegeners-UK (http://wegeners-uk.co.uk/)

The last link is my site, which is pretty bare at the moment, so I'll be asking for help with it soon :flapper:

Obviously, I don't want to tread on any toes, but I think that localised information will be very helpful, especially for those of us who like to meet face to face, or know that there's someone else in the same situation nearby :smile1:

05-05-2011, 01:51 AM
That sounds like a good idea Tippon. I always enjoy meeting new Weggies.

05-08-2011, 01:13 AM
This is an excellent website for figuring out what your lab tests mean.
Lab Tests Online: Welcome! (http://www.labtestsonline.org/)

12-28-2011, 02:11 AM
Vasculitis-Education : Vasculitis Education (http://health.groups.yahoo.com/group/Vasculitis-Education/)

This is a great "news" site started by a gentleman named Jim, that suffers from Central Nervous System Vasculitis. He posts news sites and medical posts on a daily basis, as they pertain to Vasculitis. Some are technical, others are anecdotal. Sign up, and you receive a compilation every day.

12-28-2011, 06:26 AM
This reminds me I have a dentist appointment in the new year.

12-28-2011, 07:58 AM
This reminds me I have a dentist appointment in the new year.

you are funny this week phil

12-28-2011, 01:23 PM
you are funny this week phil

Wasn't I funny last week?

12-28-2011, 01:44 PM
Wasn't I funny last week?

You are always funny, Phil. All ways. Not to mention a pretty good chap.


12-29-2011, 03:38 AM
Back on track, please. This is an important thread.

01-18-2012, 04:56 PM
Medical Transportation

I know we had folks asking about medical transportation options before. I found this in the in flight magazine on my way to Florida.

Medical Transportation (http://www.southwest.com/html/southwest-difference/community-involvement/charities/medical_transportation.html)

Anyway you can apply and if accepted they will help you travel to different cities for treatment. For instance the Mayo Clinic and JHU are both members. Cleveland Clinic childrens is, but not the regular clinic (which I find odd). Anyway I wanted to put this out here if anyone might need to try to get to better care.

04-23-2013, 12:09 AM
Wegener's-Tests (http://www.wegenersgranulomatosis.net/Vasculitis_and_WG_Tests.html)

I found this to be very informative about what test should be run.

12-25-2013, 04:17 AM
Here is an update to the link Andrew posted in 2008. It is a great handbook for new Wegs people, families, friends and the more experienced if you need a refresher. Lots of meds, terms, and tests are explained along with the different vascular diseases. Patient Information Book (http://www.vasculitisfoundation.org/mcm_resources/vasculitis-patient-information-resource/)

11-13-2014, 09:29 PM
A good over view of GPA and treatment issues is located on:

Granulomatosis With Polyangiitis (GPA)





https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Granulomatosis_with_Polyangiitis_%28Wegener_s%29/ (http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Wegener%27s_granulomatosis)