the Chicago Vasculitis Symposium via webinar

[Palmyra]

I hope this translates for those that might be interested:

2012 Vasculitis Symposium Webinar -- Select Chicago Sessions Online


Participate in the 2012 Vasculitis Symposium via webinar. The webinar will
offer some of the sessions from the 2012 Vasculitis Symposium. Please
note, you will need to register for each session you want to attend. The
sessions and registration links are below. Space is li...mited.

MORNING SESSION: 8:30 a.m. - 10:00 a.m. CDT
Register at: _https://www4. gotomeeting. com/register/ 694259583_ (https://www4.gotomeeting.com/register/694259583_)
(https://www4. gotomeeting. com/register/ 694259583 (https://www4.gotomeeting.com/register/694259583))

What Is The "State of the Art" for Treatment of Vasculitis?
Peter A. Merkel, MD, MPH
Division of Rheumatology, University of Pennsylvania

What Does The Future Hold That Is Even Better?
Gary S. Hoffman, MD, MS, Center for Vasculitis Care and Research,
Cleveland Clinic

The VCRC Vasculitis Illness Perception (VIP) Study: Illness Perception,
Fatigue, and Function in Systemic Vasculitis
Peter C. Grayson, MD, Boston University Vasculitis Center

MORNING BREAKOUT SESSIONS: 10:30 a.m. - 12:00 p.m. CDT

Breakout Session 1A: The Newly Diagnosed Patient with Any Form of
Vasculitis
Register at:
_https://www4. gotomeeting. com/register/ 298475287_ (https://www4.gotomeeting.com/register/298475287_) (https://www4. g (https://www4.g/)
otomeeting.com/ register/ 298475287)
Dr. Phillip Seo, The Johns Hopkins Vasculitis Center, and Professor
Wolfgang Gross, University of Luebeck, Clinic for Rheumatology, provide an
overview of Vasculitis in general, including understanding treatments, tests and
procedures, and medications and side effects.

Breakout Session 1B: Small Vessel Vasculitis
Register at:
_https://www1. gotomeeting. com/register/ 315413312_ (https://www1.gotomeeting.com/register/315413312_)
(https://www1. gotomeeting. com/register/ 315413312 (https://www1.gotomeeting.com/register/315413312))
Small Vessel Vasculitis [Churg Strauss syndrome, Granulomatosis with
polyangiitis (Wegener's) and Microscopic polyangiitis]

Breakout Session 1C: Behcet's, Cryoglobulinemia, Polyarteritis nodosa,
Central nervous system vasculitis and hepatitis-associate d vasculitis
Register at:
_https://www1. gotomeeting. com/register/ 817031297_ (https://www1.gotomeeting.com/register/817031297_)
(https://www1. gotomeeting. com/register/ 817031297 (https://www1.gotomeeting.com/register/817031297))
Dr. Kenneth J. Warrington of the Mayo Clinic discusses Behcet's,
Cryoglobulinemia, Polyarteritis nodosa, Central nervous system vasculitis and
hepatitis-associate d vasculitis.

Breakout Session 1D: Large Vessel Vasculitis (Giant cell arteritis,
Polymyalgia rheumatica and Takayasu's arteritis)
Register at:
_https://www1. gotomeeting. com/register/ 942372952_ (https://www1.gotomeeting.com/register/942372952_)
(https://www1. gotomeeting. com/register/ 942372952 (https://www1.gotomeeting.com/register/942372952))
Dr. Antoine G. Sreih of the Rush University Vasculitis Clinic and Dr.
Curry L. Koening of the University of Utah discuss Large Vessel Vasculitis
(Giant cell arteritis, Polymyalgia rheumatica and Takayasu's arteritis).

AFTERNOON SESSION: 12:45 p.m. - 1:45 p.m. CDT

Afternoon Session: What is remission?
Register at:
_https://www4. gotomeeting. com/register/ 153226191_ (https://www4.gotomeeting.com/register/153226191_)
(https://www4. gotomeeting. com/register/ 153226191 (https://www4.gotomeeting.com/register/153226191))
Dr. Carol A. Langford of the Center for Vasculitis Care and Research
discuss what remission means to a vasculitis patient.

AFTERNOON BREAKOUT SESSION: 2:00 p.m. - 3:00 p.m.

Breakout Session 2A: Vasculitis Fall-Out
Register at:
_https://www1. gotomeeting. com/register/ 988828185_ (https://www1.gotomeeting.com/register/988828185_)
(https://www1. gotomeeting. com/register/ 988828185 (https://www1.gotomeeting.com/register/988828185))
Dr. Philip Seo of the Johns Hopkins Vasculitis Center explains the
fall-out associated with symptoms and treatment of vasculitis.

Mark Your Calendars for Vasculitis Awareness Month- May, 2012
"helping extra ordinary people live extra ordinary lives."


(http://us.mg205.mail.yahoo.com/dc/blank.html?bn=708&.intl=us&.lang=en-US#toc)

[pberggren1]

I wonder what day it is?

[Red]

Saturday,April 21 i think

[Debbie C]

I'll have to remember to register in the a.m. I want to hear what Dr. Hoffman has to say since I'll be seeing him Monday. It looks like it going to be a good seminar...covering alot of topics. Thanks for the info Palmrya

[Palmyra]

YEP! sign in one and all early....if you cannot make it to the meeting in person, this is the next best thing! I have signed up for a max of four events, and look forward to them all. The webinar is first come/first serve what ever that means.

Go for it Weggies!

~Jane

[pberggren1]

I would if I had audio.

[Debbie C]

I signed up for them just now..didn't want to take a chance and not get in. I hope it will be good

[Red]

let me ask a stupid question phil why do you need audio ?

[Trudy]

I am so disappointed that I am not able to go tomorrow. I am still having difficulty walking, and everytime we lower the Prednisone all the inflammation starts back up. I gave away my tickets and signed up for online. Hope someone enjoys what I picked for lunch!

Think I need to replace my snowpeople

[Debbie C]

I forgot they are on a different time zone then I am on. I got up early and logged in but know was there !! I have time for breakfast and steroids now.

[Debbie C]

well I have been listening to the seminar most of the day and it was somewhat interesting.I was getting so tired of listening I was fighting to stay awake at times. Dr. Seo from John Hopkins and Carol Langford from CC were the most interesting I thought.But they really didn't have anything "new" to say. No new meds on the horizon ,just the same old treatment. I think I am going to take a nap now.

[Palmyra]

I took a lot of notes, well, because thats what I do~:wink1: I do agree w/ Debra that from the lectures I listened to, I did not hear a lot of new information. Just some little tid-bits of things that were either polished in a manner that brought about new meaning, or small messages about every day quality of life issues.

I plan on posting a digested version of information tomorrow. I certainly hope those of you that might have listened to other lectures (ie, I did not listen to Dr Langford,) will do the same.!

Phil, sorry you lacked the audio to listen. I hope that was due to computer inadequacy, not due to your own hearing ability. I hope those implants are working well!

[pberggren1]

My brother wrecked our speakers.

[julia]

I attended the seminar, interesting, nothing really new. I am tired. Appreciate the speakers coming to Chicago.
Vasculitus Foundation wants to really start getting the word out about the disease.

I think I may be in love with Dr. Seo.

[Sangye]

LOL Julia, isn't Dr Seo a riot? He is so doggone funny.

[Sangye]

Will they be posting the lectures online anywhere? Can someone who's there ask about it?

[pberggren1]

Will they be posting the lectures online anywhere? Can someone who's there ask about it?

I think it will be on the VF website but not totally sure.

[Trudy]

Will they be posting the lectures online anywhere? Can someone who's there ask about it?
I was supposed to attend, but physically unable. I did listen to the lectures live online. Not much new, but Dr. Seo was funny. He said since he is not a cardiologist that to him a Big Mac and fries would be a better source of calcium than alot of tofu. They were asking people to do a short tape of testimony that will be aired, I believe, next month on the Vasculitis Foundation site. Do you know if May is vasculitis month? I can try to email the person from the symposium who contacted me to see about the lectures being aired. They were just audio with slides. I was disappointed in not seeing the speakers. I did take some notes, but have not gone over them yet. Not much new was said, but there may be some a few things to share.

[Sangye]

I did listen to the lectures live online. Not much new, but Dr. Seo was funny. He said since he is not a cardiologist that to him a Big Mac and fries would be a better source of calcium than alot of tofu.
I will have a little talk with him about that comment the next time I see him! (Even though I agree that tofu is not a good thing to eat)

[Palmyra]

Ahhem...It is woefully easy to fall for a smart, funny doc that really has a big heart!:drool:

So here are a few things that were new to me or expounded upon regarding via Webinar:

1. Biggest news, that there is recent evidence that giant cell arteritis may have its start via infection with a bacterium Burkholderia - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Burkholderia) (it has actually been cultured from biopsies of the vessels involved). The doc speaking (name? He spoke in a morning session) actually said that it would be really exciting if this form of vasculitis might be treated with something as simple as a targeted antibiotic.

2. The docs are actually interested in why these diseases can cause significant levels of fatigue, even if medical markers are in the "good: range. Quote: "Fatigue is considered one of the most important disease burdens, and it does not necessarily correlate with clinical illness issues." I am sure there are many on this site that would love to have that burden lifted. He suggested that extreme fatigue may be more related to an inflammatory cascade that was not easily measured with traditional tests, as it seems to be very common to those with MS, lupus, Crohn's, etc....


3. Those with PR3-ANCA did not respond to Rituxin induction therapy as did those with MPO-ANCA. Much to learn about Rituxin treatment, both for induction therapy and long term maintenance.

4. Bactrum appears effective more for those with sinus involvement, and many consider a prophylactic for suppression related pneumonia. (nothing new here...)

5. Dr Seo commented that many with peripheral neuropathy type symptoms may actually be suffering from co-commitant Raynaud's phenom (a separate autoimmune condition) or simple carpal tunnel syndrome. Tingling/numbness is one thing. Visible color change in fingers toes points to Raynaud's. He stated he is careful in making that differential prior to recommending treatment.

6. Dr Seo re: fatigue... look for other contributors; weight gain may be more responsible than the disease. Pred causes muscle loss, and lean muscle mass is critical to fight fatigue. "Eat real food, not too much, mostly plants."

7. He provided information on sleep disorders (it will happen if neck size is above average, resulting in apnea,) to check one's testosterone levels and the sad fact that obesity is actually a significant contributor to low level chronic inflammation :sad: He does not like iron supplements, but he does like fish oil and supplemental calcium. He said one simply cannot consume enough calcium from food sources (he recommended 1,000-1,500mg at 500mg intervals with meals).

Anyone else get any other details? Sadly, I did not hear any mention of new promising drugs coming down the pipeline or of hints of a broad cure on the horizon. Maybe next year!

Hugs to all,
JTF, Alison's mom

[Al]

My brother wrecked our speakers.He tweaked your tweeters and muzzled your woofers? That's disgusting and mean, Phil. Was he trying to transcribe "In a gadda davida" at inhuman levels? How you gonna exact your revenge?

Al

[Al]

Thanks, Jane, for these specifics.
Ahhem...It is woefully easy to fall for a smart, funny doc that really has a big heart!:drool: Er, couldn't say....


1. Biggest news, that there is recent evidence that giant cell arteritis may have its start via infection with a bacterium Burkholderia - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Burkholderia) (it has actually been cultured from biopsies of the vessels involved). The doc speaking (name? He spoke in a morning session) actually said that it would be really exciting if this form of vasculitis might be treated with something as simple as a targeted antibiotic.This is quite interesting, though the vasculitis getting its start from a bacterium in one thing, but what keeps it going? WG itself may often get its start from a bacterium (E. coli is one top contender), but once the disease is rolling, the original trigger is no longer necessary in most cases.


2. The docs are actually interested in why these diseases can cause significant levels of fatigue, even if medical markers are in the "good: range. Quote: "Fatigue is considered one of the most important disease burdens, and it does not necessarily correlate with clinical illness issues." I am sure there are many on this site that would love to have that burden lifted. He suggested that extreme fatigue may be more related to an inflammatory cascade that was not easily measured with traditional tests, as it seems to be very common to those with MS, lupus, Crohn's, etc....The "inflammatory cascade is, indeed, a clearly important, if somewhat enigmatic part of the vasculitis disease cycle. And I can easily believe that it has a lot to do with fatigue. (From an adaptational viewpoint, it seems appropriate that the inflammed body says, "hold on! Give it a rest while I sort out this apparent invasive microbe crap."


3. Those with PR3-ANCA did not respond to Rituxin induction therapy as did those with MPO-ANCA. Much to learn about Rituxin treatment, both for induction therapy and long term maintenance. Very interesting. I saw a note about this in an abstract, but it would be nice to know the full source.


4. Bactrum appears effective more for those with sinus involvement, and many consider a prophylactic for suppression related pneumonia. (nothing new here...)Maybe nothing new, but did he say anything about Bactrim as a prophylactic against Staph?


5. Dr Seo commented that many with peripheral neuropathy type symptoms may actually be suffering from co-commitant Raynaud's phenom (a separate autoimmune condition) or simple carpal tunnel syndrome. Tingling/numbness is one thing. Visible color change in fingers toes points to Raynaud's. He stated he is careful in making that differential prior to recommending treatment.Quite possble, but it can't be the full answer: Many of us with idiopathic PN clearly do not have Raynaud's.

6. Dr Seo re: fatigue... look for other contributors; weight gain may be more responsible than the disease. Pred causes muscle loss, and lean muscle mass is critical to fight fatigue. "Eat real food, not too much, mostly plants." Again, this cannot be the complete answer. Those of us who have lost weight, have gone to great lengths to preserve muscle mass, and have a fetish for "real food" still suffer from fatigue. I suspect that there is a sensor that works like I suggested above.


7. He provided information on sleep disorders (it will happen if neck size is above average, resulting in apnea,) to check one's testosterone levels and the sad fact that obesity is actually a significant contributor to low level chronic inflammation :sad: He does not like iron supplements, but he does like fish oil and supplemental calcium. He said one simply cannot consume enough calcium from food sources (he recommended 1,000-1,500mg at 500mg intervals with meals).Again, this is all very interesting. (In any case, iron supplements to nothing to combat anemia if the kidneys are stressed.)


Anyone else get any other details? Sadly, I did not hear any mention of new promising drugs coming down the pipeline or of hints of a broad cure on the horizon. Maybe next year!
Thanks again!

Al

[pberggren1]

How come Dr. Seo does not like iron supplements?

[Palmyra]

I am only guessing, but iron is literally a heavy metal and can combine with many other molecules. It can only be processed a small amount at a time. Obviously, if one is anemic, it would be a necessary addition to restore proper red blood cell function. Al's point about poor kidney function and iron supplementation is noted. I have heard for years that men and post menopausal women should not consume iron in multivitamin form. Here's a little blurb from Wikipedia: http://en.wikipedia.org/wiki/Iron_supplements#Contraindications


And as to all of Al's comments above, I think he better get on his lab coat and do some research into these matters! I don't have the necessary equipment! :biggrin1:

[Sangye]

Thanks for these notes, Palmyra!

You should not take iron supplements unless your labs demonstrate anemia, or you are a woman with heavy periods. It's very easy to get too much.

Al, I think the point Dr Seo was making about PN is that it might be Raynaud's in disguise. If a doctor doesn't differentiate it, they might treat the patient as if it were active Wegs. From watching him for over 3 years, I'd say Dr Seo's main focus is differentiating active Wegs from: 1) damage from Wegs, 2) damage from complications, 3) side effects from drugs, 4) damage from drugs and 5) complications. He is always concerned about over-treating for Wegs when symptoms might be due to one of the other factors.

[Al]

Thanks for these notes, Palmyra!

You should not take iron supplements unless your labs demonstrate anemia, or you are a woman with heavy periods. It's very easy to get too much.

Al, I think the point Dr Seo was making about PN is that it might be Raynaud's in disguise. If a doctor doesn't differentiate it, they might treat the patient as if it were active Wegs. From watching him for over 3 years, I'd say Dr Seo's main focus is differentiating active Wegs from: 1) damage from Wegs, 2) damage from complications, 3) side effects from drugs, 4) damage from drugs and 5) complications. He is always concerned about over-treating for Wegs when symptoms might be due to one of the other factors.Good points about the PN.

My comment about kidneys and anemia refers to the fact that such anemia is not related to low iron, per se, but, rather, the more general issue of red blood cell manufacture, the production line of which is inefficient when there is kidney damage. No amount of iron supplementation will help in these cases. Also, there is a condition called hemochromatosis that, ironically, often presents similarly to anemia. But iron supplementation for these sufferers is really bad. Hemochromatosis is a genetic condition where its sufferers absorb too much dietary iron.

Jane: At my age, if I put on a white jacket, I would probably drool all over it. But you have opened up a lot of avenues for study on a rainy day!

Al

[Palmyra]

I don't believe the drooling Al...keep up the active brain. And three cheers to Sangye. We need all of the collective knowledge we can get on this site. Hugs! JTF

[pberggren1]

Sangye, I have taken an iron supplement, 300mg of ferrous sulfate, for about 2 years now. I know I asked my doc at the beginning why he wanted me to take it but for the life of me I can't remember now. Same with Folic Acid. I take 5mg of that. I also usually have blood work done each week and have anywhere from 4 to 8 vials drawn. Maybe it is because my hemoglobin is low?

[Sangye]

Phil, double check that your doctor has the iron listed in your chart. He should occasionally do some labs to check iron levels. He'll know what to do-- this is pretty standard stuff.

[pberggren1]

Phil, double check that your doctor has the iron listed in your chart. He should occasionally do some labs to check iron levels. He'll know what to do-- this is pretty standard stuff.

Thanks Sangye. I'll ask him on Friday. It is so easy to overlook the little things or forget things.

[Shannon]

I am so sorry that I missed this. If you know of anyone that has CD's of these sessions for purchase I would very much be interested in purchasing them. I have wanted to attend this symposium but it has never worked with my calendar.

[Al]

Check with the vasculitis Foundation, Shannon. They will eventually put out videos, though there is a lag.

Al