We have a rare disease and it is up to us to make sure we get the best medical care and part of that is self education. IF you read only one thing about your ANCA related Vasculitis all year… then THIS should be it. Seriously, not kidding.
First off Granulomatosis with polyangiitis (GPA, Wegener’s granulomatosis), microscopic polyangiitis (MPA) and eosinophilic granulomatosis with polyangiitis (EGPA, Churg-Strauss syndrome) are termed the antineutrophil cytoplasmic antibody (ANCA)- associated vasculitides. Even IF you are ANCA Negative (50% of CSS/EGPA patients you are still considered to have an ANCA Associated Vasculitis.
On June 23rd, 2016 a new document was published that updated the guidelines for treatment of ANCA Associated Vasculitis. This was the first major revision of treatment guidelines since 2009 and in many ways it is a game changer because of the newer biological medicines. It was created by European League Against Rheumatism (EULAR). Which includes doctors, nurses, researchers and even a patient.
Fifteen recommendations were developed, covering general aspects, such as attaining remission and the need for shared decision making between clinicians and patients.
Most of our doctors who oversee our Vasculitis diseases may have not come across this paper yet. It is up to us, as a community that fight this illness every day to make sure our doctors know of the existence of this document and read it. Please make copies, ask your doctor if they have seen it, hand them a copy… leave them a copy, mail them a copy. Many doctors do not have time to research and see the newest guidelines because they are too busy having to a patient every 15-30 mins. It is really up to us, as educated patients to put this in out doctors hands. I KNOW this is asking a lot but you may be helping yourself and others in the process. Plus you owe it to yourself to read it… and maybe reread it a few days later so things make sense.
What is reading and comprehending is Not you ‘thing’? (gotta love brain fog) Well, Great News then. The Vasculitis Foundation offered an amazing Webinar last week in which Dr Richard Watts goes over the Guidelines for treatments and offers more background on the treatments with some very informative slides.
I had some misunderstanding about the EULAR report and Dr Watts really gave me more insight. (one was that things may have been rated a ‘C’ — not because they are unimportant but that there is lack of research on it). These guidelines are not common practice yet and maybe by us, as patients, understanding them we can ask the questions that need to be asked and obtain better outcomes for ourselves or our loved ones.
So you should READ the EULAR report AND WATCH the Webinar. Seriously… get yourself some popcorn. Also ASK questions if you are having trouble understanding the contents of the webinar. There are many very helpful groups on FaceeBook that can help or call / email the VF if you need help in seeking the best medical care or you just want to Thank them for the Webinar. If you have ideas for future Webinars let the VF know too.
The Vasculitis UK has on their website a laymen’s guide to the new guidelines. John Mills was the patient that participated in developing these guidelines. Thank you Susan Mills for sending me this link.
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