Links for good over view on what GPA is and how it is treated.

[drz]

Granulomatosis with Polyangiitis (Wegener's) - Diseases and Conditions | Aetna InteliHealth (http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/1182361.html)

Vasculitis Clinical Research Consortium - Learn More (http://rarediseasesnetwork.epi.usf.edu/vcrc/learnmore/definitions.htm#wg)

Granulomatosis with Polyangiitis (Wegener's) | American College of Rheumatology | ACR (http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Granulomatosis_with_Polyangiitis_%28Wegener_s%29/)

How it compares to MPA:
Microscopic Polyangiitis - Types of Vasculitis (http://www.hopkinsvasculitis.org/types-vasculitis/microscopic-polyangiitis/)

Granulomatosis with Polyangiitis: Vasculitic Disorders: Merck Manual Home Edition (http://www.merckmanuals.com/home/bone_joint_and_muscle_disorders/vasculitic_disorders/granulomatosis_with_polyangiitis.html)

http://bestpractice.bmj.com/best-practice/monograph/327/diagnosis/step-by-step.html

Granulomatosis with polyangiitis (Wegener's granulomatosis) - NHS Choices (http://www.nhs.uk/conditions/wegeners-granulomatosis/Pages/Introduction.aspx)

Granulomatosis with polyangiitis (Wegener's granulomatosis) - - - University of Utah Health Care - Salt Lake City, Utah (http://healthcare.utah.edu/geninternalmedicine/rheumatology/vasculitis/granulomatosis.php)

Wegener's granulomatosis: Symptoms - MayoClinic.com (http://www.mayoclinic.com/health/wegeners-granulomatosis/DS00833/DSECTION=symptoms)

Last one that I just found is impressive on dept but can be discouraging or depressing too as it points out the high range of various symptoms people with GPA are likely to experience or can experience as part of the disease:

http://www.gpa-mpaclinical.com/overview/introduction

Some links also list providers at their place. The content is very similar on symptoms and treatment which is good sign for us.

[JeanMarie]

Thank you--good info!!!!

[pwc51]

Please can I add the following, produced by Vasculitis UK? It summarises all types of vasculitis which some may find useful. So far over 300 physical copies have been delivered to doctors and consultants.

Vasculitis Routemap - A Guide for Patients & Professionals (http://www.vasculitis.org.uk/about/routemap)

[annekat]

Really great list of links, drz and pwc51. Thanks! It would take some time I don't have to read through them all, so I've bookmarked them in my "health" folder on my browser. It's great that there's all that info from trusted sources on this weird thing we all have!

[marylz]

Thanks for the links_ very good information.

[chrisTIn@]

Very good overview!
Maybe this thread can be made sticky?

[andrew]

Very good overview!
Maybe this thread can be made sticky?

Done! :)
Great links thanks!

[mishb]

Done! :)
Great links thanks!

You ask.........and the Chief delivers.

He is awesome :thumbsup:


And thanks drz and Peter - terrific links

[Reetsky]

:biggrin1:Thank you for taking the time to list these websites: you are a real Gem.

[Wegetarian]

Fairly interesting comparison of treatments: Treatment of ANCA-Associated Vasculitis in Adults (http://www.intechopen.com/books/updates-in-the-diagnosis-and-treatment-of-vasculitis/treatment-of-anca-associated-vasculitis-in-adults)

Treatment of ANCA-Associated Vasculitis in Adults | InTechOpen (http://www.intechopen.com/books/updates-in-the-diagnosis-and-treatment-of-vasculitis/treatment-of-anca-associated-vasculitis-in-adults)

They refer to quite many trials, and its published in February.

[Wegetarian]

This paper had some interesting things:
Treatment of ANCA-associated vasculitides (AAV) (http://www.sciencedirect.com/science/article/pii/S1568997212001711)



Unfortunately access is limited, so I suppose you need to be on a university computer or such to be able to retrieve it.

It mentioned MTX could be used for remission induction in non-organ threathening conditions and as maintenance.

It mentioned that the main cause of death is infections (about 50% of deaths) instead of active vasculitis. They refered to this study about it:
Early mortality in systemic vasculitis: relative contribution of adverse events and active vasculitis. (http://www.ncbi.nlm.nih.gov/pubmed/19574233)

Early mortality in systemic vasculitis: relati... [Ann Rheum Dis. 2010] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19574233)

If I understood correctly it also said that RTX isn't necessary safer than Cyclos (something about safery profile?) but had some other benefits.

You do really have to take my comments with a large grain of salt. I mean I've read my share of academic papers in the past, but none of them have been related to medicine and I had a hard time understanding many of the comparisons since I know so little about all of this. Also I wasn't particularly interested in reading abotu RTX or cyclos since there are no plans for me to use either.

I did find it really interesting to know that infections kill more of us than the actual disease (assuming I understood that correctly).

Maybe a bit off-topic but I'm not really sure how much time I want to spend reading scientific articles about this disease though. While I do think its important for me to know how this disease works and what to expect, but then again the comparisons of different studies doesn't really give much to me. I suppose I'll just continue browsing the forums hoping for some interesting tid-bits and hope the facts have been at least somewhat peer-reviewed by member here who have a better understanding about the subject than I do. Also I think practical guides are much more beneficial for me, like the advice given by many of the members who have had this condition for years.

[drz]

Our broken immune systems and the immuno-suppressant drugs we take for treatment do make any infection very dangerous for us.

[Wegetarian]

For those of you that are on Facebook, consider joining the closed group "Vasculitis: More Common Than You Think. More Serious Than You Know."

It seems to have quite a lot of interesting links and info related to vasculites and currently almost 300 members. with more being added all the time.

[Wegetarian]

Found a really nice overview of Weg, so I'll put it here so noobs at the forum can find it easier :)

Vasculitis: Granulomatosis with Polyangiitis and Microscopic Polyangiitis (http://www.gpa-mpaclinical.com)

[annekat]

For those of you that are on Facebook, consider joining the closed group "Vasculitis: More Common Than You Think. More Serious Than You Know."

It seems to have quite a lot of interesting links and info related to vasculites and currently almost 300 members. with more being added all the time. Thanks! I just joined it.

[pberggren1]

A friend of mine started that group. He is very funny.

[Alysia]

For those of you that are on Facebook, consider joining the closed group "Vasculitis: More Common Than You Think. More Serious Than You Know."
.

Hi, there are more groups on fb:
https://www.facebook.com/groups/2254691112/
https://www.facebook.com/groups/wegenersgranulomatosis/
https://www.facebook.com/groups/180399172072972/


but I must say that this forum is the best.
thank you so much Andrew :thumbsup:

[annekat]

I agree that this forum is the best. I always wonder about all the people with WG I see on FB and wonder why they aren't here with us.