UCLA Vasculitis Patient Conference
UCLA Medical Center, Santa Monica
October 18, 2014
Part 1 — first two out of 6 talks….
Disclaimer: This is strictly what I took away from the conference. These are not direct quotes unless in “quotation marks”. I may have taken away something different from other attendees since my focus was on CSS and I have 8 years of experience living with this chronic autoimmune illness. Also realize my dry sarcasm may shine through at times 😉 Also remember this is my review of the conference…. Not a transcription of it.
I left my house at 5am to catch a one hour flight to LAX airport. I was excited that a local friend and nurse from Los Angeles was picking me up and going to attend the conference with me. Parking was no problem but finding the conference area and registration was difficult. Signage was no where to be found. The registration table was staffed by VERY friendly and helpful people. It was efficient and quick. Name Tags were optional but I think asking people to also tag their type of Vasculitis if known would have been helpful to us who may have been, “searching for our own kind” The conference room was Very comfortable with ample seating and desktops and wonderful sight and audio of all the speakers.
I was happy to meet an online ‘churgie’ pal while in line and we took a few minutes to converse before the talks started.
Talk 1 – Vasculitis A Year in Review by Dr Tanaz Kermani (UCLA medical center)
Talk was a very general update about Vasculitis and the research and articles that have come out over the past year.
My take away points: comments in ( ) are totally my opinions or rambling thoughts.
- Researchers are looking further into the role of Cytokines
- Researchers are investigating CECR1 – gene mutations and Vasculitis
- Rituxan has become the 1st FDA approved medication for the treatment of ANCA associated Vasculitis (finally….)
- After Active investigations it is being found that Rituxan alone is just as good as the Cytoxan and Imuran combo.
- Looking further into adding additional immunosuppressants to work in combination with Rituxan can lead to better outcomes
- Abatacept used in Wegners for patients with frequent flares with <30mg pred and upper airway and sinus indications
- CSS patients are known to frequently (just over 50% if I remember correctly the bar graph shown was VERY small….) to have 5 more manifestations of active disease after original diagnosis. (this means CSS people be vigilant about going to dr when you know something may be not right)
- Majority of CSS patients will flare in a ‘new’ area than their original CSS manifestation. This is a new finding. Previously it was thought CSS patients usually flare in the same way as their original presentation. (CSS patients need to be vigilant and speak up if they think they are flaring in a new system – some doctors assume we always flare in the same way as original presentation…. New research, new findings… that many of our treating doctors will not know about… just FYI fellow ‘churgies’)
Talk 2 – Interventions for Vasculitis. When to proceed? A Vascular Surgeons perspective on the role of the imaging modalities and interventions that can help our patients with Vasculitis by Dr David Rigberg (UCLA medical Center)
His presentation had lots of fascinating scan pictures of vessels… and pictures of bypass surgery. (Dr Rigberg talked a lot about large vessel Vasculitis…. If I had TAK or other large vessel Vasculitis I would so want him on my team.)
Vasculitis is an obstructive process – vessels balloon, damages and may burst.
*Treatment is based upon patient impact
He sees problems vascular problems as:
- No problem (patient can cope with it, no threat)
- Lifestyle limiting (patient will have to alter his / her lifestyle ex: loss of feeling in one hand… harder to get off chairs due to weakness in one leg…)
- Life threatening (must be treated with medical intervention)
He states the ‘best exams’ are usually the cheapest and easiest and not invasive.
- Pulse exam (just test pulses in areas of the body to compare)
- Ultrasound – to check blood flow
- Treadmill tests
He brought up a really interesting point that Vascular Surgeons do not want to operate during a flare. He had a great chart that showed the greatest chances of a bypass or other vascular surgery working was when a patient was not in a flare and on none or low steroid dose. Basically it showed that if they operate during a flare (aka active disease) they have found they need to re-do (operate again) in 57% – 67% of Vasculitis patients.
He also talked about the fact that stents do not hold or work as well in Vasculitis patients since our problem is inflammation and damage to our vessels. He gets much better results out of bypasses then stents. He knows it means more healing time and is an ‘open’ operation but in the long run the results will be better with less chances of a re-do. He reminded us that doctors have much experience with ‘open’ bypass operations so they are very effective.
Lastly he wanted to emphasize that your Vascular surgeon needs to work VERY CLOSELY with your Rheumatologist for best outcomes!!!
To be continued…..