The future of Vasculites: Part 1

[Wegetarian]

Interesting video by the Laurie Curie Twilight Foundation



http://vimeo.com/117666255

The Future of Vasculitis - Part 1 on Vimeo (http://vimeo.com/117666255)



The Future of Vasculitis is an online webcast funded and produced by The Lauren Currie Twilight Foundation. The webcast guest panel of vasculitis experts included Dr Alan Salama and Dr Neil Basu. The webinar is presented by Grant Currie, Co-founder and Trustee of The Lauren Currie Twilight Foundation. The presentations from our vasculitis experts focused on the development of vasculitis outcomes and treatments in the last few years and the future objectives and direction from research.For more guidance videos and webcasts please visit:
thelaurencurrietwilightfoundation.org (http://www.thelaurencurrietwilightfoundation.org/)
vasculitis.tv (http://www.vasculitis.tv/)

[gilders]

Thanks for posting this. It's almost an hour long, so for those that don't have a spare hour I'll note down some of the info that I personally found interesting -
Interesting points-
Before any treatment regime had been made 80% of patients died within 12 months and within 4 years it was virtually 100%.
With modern medicine 11% die within 12 months (50% of these due to effects of the treatment, e.g. an infection whilst patient is in drug induced immuno-suppression). I think an 11% death rate is much better than previously, but still HIGH.
Only 14% (of the 11%) die from active WG. This indicates that far more people die from having too much/strong treatment than those that haven't had a strong enough dose of treatment.
High dose steroids can also mask symptoms and assessments which can make it more difficult to determine how active the disease is and how to treat it.


Rituximab supperior for manitenance therapy than Azathioprine


Questions are asked about the use of steroids beyond the first 2 weeks? Some eveidence suggests that they play litle helpful
role beyond initial high dose.


Vasculitis patients have 11x poor quality of life compared to general population.


Approx 1/3 of WG patients are ANCA negative (I think this was "active" WG)


Many patients in remission still have a positive ANCA (which most of us know). But the Drs on this webinar think a lot of these people
are then left on long term treatment that, perhaps, they do not need.




Wegeners correlation with cardiac involvement. Uncommon, but because your body is going through a lot of stress with WG/vasculitus
it can cause other medical manifestations such as the heart. I found this interesting as I have cardiac issues.

[Pete]

Gilders,

Thanks for the summary. I have the webinar bookmarked and will view it my leisure.

[Wegetarian]

Yeah, the part where the first doc discussed how most people die from the medication due to the weakened immunesystem was quite interesting. It was also nice to see how good the predicictions for Wegs have gone.
I think the graph shown there looked quite good after the first year, better than the ones I've seen before. I mean when looking at these 20 year graphs we should take into account that the average age for diagnosis is fairly high (about 55 if I remember correctly) so for someone dx'd at 80 a 20 year graph might not look that nice even without a serious disease. Dunno if they had made any corrections for that.

I have that article about Aza vs RTX for maintenance, I think it said along the lines that 30% relapsed within 2 years of using Aza while only 5% of the RTX group relapsed. A quick google would probably find the summary.

[mrtmeo]

Yeah, the part where the first doc discussed how most people die from the medication due to the weakened immunesystem was quite interesting. It was also nice to see how good the predicictions for Wegs have gone.
I think the graph shown there looked quite good after the first year, better than the ones I've seen before. I mean when looking at these 20 year graphs we should take into account that the average age for diagnosis is fairly high (about 55 if I remember correctly) so for someone dx'd at 80 a 20 year graph might not look that nice even without a serious disease. Dunno if they had made any corrections for that.

I have that article about Aza vs RTX for maintenance, I think it said along the lines that 30% relapsed within 2 years of using Aza while only 5% of the RTX group relapsed. A quick google would probably find the summary.

That's a huge difference when it comes to relapse.