EULAR Report and informative Webinar on ANCA Vasculitis Treatment

We have a rare disease and it is up to us to make sure we get the best medical care and 9f4dfaa85e32a668c3063db2f8cc1833part 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.  b041636c2bce52c57a9149ccbb9487a6Many 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.

14725544_1584574984980762_2908869520809828059_nI 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.

logo-blueEULAR REPORT on ANCA Associated Vasculitis Treatment

vasculitis-uk-logoThe 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.

 

logo1-300x60Webinar by Dr Watts on ANCA Associated Vasculitis Treatment

Webniar Time stamps — so you can go to the section that most interests you.
(thank you VF for publishing the time stamps)
What is ANCA Vasculitis 2:35
Aims of disease management 3:08
Future Challenges: Mortality Relapse 4:16
Background on the two sets of guidelines 5:40
Evidence Strength 7:51
Recommendation 1 9:34
Recommendation 2 10:20
Recommendation 3: 11:11
Cyclophosphamide Classical Approach 13:57
Rituximab–RITUXVAS 14:31
Outcomes based on ANCA Type 18:52
Recommendation 4 19:54
Recommendation 5 20:32
Recommendation 6 Plasma Exchange 21:00
Recommendation 7 23:01
Rituximab for remission maintenance in relapsing AAV 24:16
Recommendation 8 31:05
Conclusion 38:01
Q&A Session
Q: How do we get these recommendations out to the doctors? How do I get my doctor to read them? 40:19
Q: What do these recommendations mean to me as a GPA patient? What do they mean in terms of how my disease is managed? 42:16
Q: Please elaborate on the recommendation that says AAV patients should be treated by centers of excellence in vasculitis. Isn’t that what should be happening now? 46:54
Q: Can you explain what the Level and Grade numbers mean on your slides? 49:12
Q: How safe is it to be on Rituximab beyond the suggested 24 month term 51:40
Q: Are there any research studies that show a significant difference between stopping treatment with steroids and Rituximab after six months vs following up with Azathioprine? 58:52
 
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