"I Don't Know" - Notes from the VF Symposium

[JanW]

I have once again got access to a laptop, however, I'm not going to have time to transcribe all of my notes because I am on vacation with my family. I will get out bits and pieces in the next week and do something more thorough when I get home. If you want to ask me questions about the conference, I will definitely try to answer them based on what I remember. Let's try to keep all the questions in this thread so that they are easy to find.

A couple of general impressions -- if you can ever have the opportunity to go to one of these conferences RUN DON'T WALK! The docs are accessible, the patients are lovely, the information wonderfully specific to WG. It far, far exceeded my expectations.

Along wtih that -- I'm going to plug the VF. If you've used their info, visited their site, or ever think you might need to benefit from WG research, support them financially. They are the largest private donor to vasculitis research in the world, and it's totally a grassroots organization.

These docs expect us -- in fact demand that we -- educate ourselves. I can't stress this enough. As an example, my surgeon's presentation was the same one he made to a professional audience at a rheumy convention. And he said we knew more and asked better questions. Never assume that you doc knows everything about you, about your condition -- any knowledgeable doc will explain and explain again if you don't understand. As my surgeon says, if it can't be explained to you, either the surgeon doesn't know what he doing or you're not asking the right questions. It's your life.

Medicine is an art and a science, but some people are really lousy artists but like to paint anyway. That's the way it is with some local rheumy that wants to make you his test case. As one of the researchers said, 'rheumys always like to believe that they know more than they do about this disease."

I title this "I Don't know" because, I heard that answer, in every single seminar, from all of the researchers. There is much that isn't known about WG because it hasn't been studied. Again, these researchers stress, it's not good enough that someone says it worked for the patients in his practice. These guys are high on evidence-based medicine and they are in the process of gathering the evidence.

Also caveats -- I did not attend any pediatric seminars so anything I report shouldn't be taken as advice for peds patients -- I have no idea. I also didn't attend any lung, kidney or GI seminars. I did two ENTs (with my favorite surgeon) and all of the general sessions that covered a variety of topics.

Another caveat --- I may completely get something ass backwards. If Sangye says she asked Seo and he told her something different -- believe Sangye!

Random thoughts:

I think Merkel, Seo, Hoffman and Langford seem lovely and you all who have them as your docs are very lucky.

Rheumys rules the vasculitis roost. Specks (who is a pulmo and just happened into research) is continually teased on this point. The surgeons are also teased. WG is a the rheumys' wheelhouse, and secondarily for a lot of people, the nephrologist's wheelhouse.

The most dangerous things for Weggies is undertreatment or overtreatment, and just right treatment is very difficult to obtain.

These docs are extremely humble in the face of this disease. They are not afraid to tell you that they don't know or that they can't help you. If your doc isn't the same -- think about it. Is that the right doc for you? Does he know better than the world's leading experts?

These drugs are scary dangerous. People tend to forget that. Docs tend to forget that. You DESERVE a shot at living free from chemotherapy drugs and prednisone. (from Dr. Seo).

Your symptoms are real and should be treated seriously and compassionately, even if they aren't life threatening. The eye doc from mayo says that WG patients with dry eye -- dry eye! -- report a quality of life no better than people on dialysis. Hearing loss, common and overlooked in WG is extremely isolating to people already isolated by disease. When my surgeon did his talk on saddle nose -- which I have -- he talked about what it must be like living with a face that doesn't look like it did six months ago. People quit jobs, don't get married, stop going out. It can be, and frequently is, psychologically devastating. Becoming infertile can be like a death.

This is probably the most significant difference that I see in these specialists vs what you guys, and many people at the conference report that their docs are like. These docs recognize that a new normal that has all of these devastating effects simply isn't good enough. And they are working towards a better day, every day, for less than 200,000 people in the American population. Astounding!

Final note: good rheumys recognize your recognitions of your symptoms is important - even more important than your bloodwork. Paul Nachman, the neph from UNC said that he had a patient come to clinic saying, "something's just not right, and I am going to Bermuda next week, should I go?" Now Nachman does the right thing - including sending him to the pulmo and ENT in the clinic, reads his CT, checks all of his bloods out -- while he waits all day at UNC. Everything checks out fine. Nachman says go. You know what happens -- he gets terribly ill far from home. Nachman didn't say what happened, but he did say, "I don't know what else I could have done in that situation -- but I wish I had done something differently." Sobering.

So I've gone on long enough for now. Your turn.

[Sangye]

I can't think of a question (yet!) but am just amazed at your notes so far. This is gonna change our group! You rock, Jan. :)

[JanW]

We (the group) need to seriously get involved with the VF. It will change that group -- I believe that. I'm thinking about ways to make that happen.

It's no surprise that lots people involved in the organization are the caregivers -- they are the people who were well (especially when you think about the 80s when the organization was first started and treatments were rougher). They have done an admirable, amazing job.

Time for the patients to step up though. It's our time. And they are actually waiting for us to do it. And we are probably over all healthier than we ever have been, so we can.

[LisaMarie]

jan enjoy your vacation....feed us all u can when u can we really appreciate it...if my health and finance are betteri
will go to the next one.... maybe do i can do a few bake sales as fund raisers or bead jewlry

[JanW]

this is actually something worth going into debt for, if you have that as a possibility. I'm dead serious.

Lots of people are skeptical before they get there, that's for sure. They don't leave that way though.

Although they really aren't supposed to, I have seen docs giving people general advice on their specific case (privately). I've seen them offer their cards to people in the hallways.

They are our heroes, but we are very clearly there's as well.

My doc says he has never had a nasty patient where he had to repair a saddle nose from WG -- except for one, and it turned out on testing that the guy was a cokehead (cocaine use can also cause the condition)! It is very typical for the docs to say how much they admire us and how amazing they are that we can keep a 'stiff upper lip' in the face of adversity.

[elephant]

Did they mention that it was hard to control sinus symptoms even if your in remission?

[JanW]

No, but there whole thing was about rinsing and cleansing every day and there were a bunch of recommendations for solutions that I will dig out of my notes at some point. Also no being around any kind of smoke (cigarette or marijuana) at any time. Some people looked as though they hadn't gotten the memo about pot!

[elephant]

JanW, enjoy your vacation and will still be here. I just happy you went and sharing this great information.

[JanW]

I know others here did too, so I hope they chime in!

[pberggren1]

Thank you so much JanW. I look forward to reading more from you about the Symposium.

[pberggren1]

So Janw, did they say why it is primarily Rheumys who handle Wegs. Obviously there are quite a few, Nephs, Pulmos, Internists, and Immunoligists as well that are the quarterbacks in Wegs care. My new Wegs doc, who has a lot of Wegs experience back in the UK, is a Nephrologist and Internist. He is very good. I am going to print off your first post on this thread and give it to him to read and see what he says.

[Sangye]

Phil, rheumys would be the ones overseeing care for any autoimmune disease. They're trained to look at a wide range of signs/symptoms, as opposed to an organ specialist who focuses on only that area.

[pberggren1]

My new Neph/Internist definitely looks at the big picture.

My previous Rheumy just overlooked my coughing up of blood but my new Neph/Internist looked into that right away and got results. My Rheumy just sat on that and did nothing. But I have learned from this as well. If you are coughing up blood have many sputum samples sent in for many different tests to be stained and cultured.

[Terri]

I'm sitting here with tears running down my face just reading about these Dr's.
Since April, I've heard more than one "I don't knows" from my rheumy . At my July appt. I just said to him, something has to be done. He told me to see Dr. Gary Hoffman at the Cleveland Clinic. I've been putting it off but now the way you have described these Dr's and Dr. Hoffman was one of them....I'm calling first thing in the morning to see if I can get in.
Thank you again for what you have posted so far. Looking forward to more posts to come.:)

[JanW]

Hoffman seems terrific and he was definitely a mentor to Langford and Lebovics, just to name two that passed through his clinic back in the day. He also just joined the board of the VF.

You may want to consider going for Langford, however, who is younger. I'm not sure of how old you are, but it's somewhat ideal if you have vasculitis to be of roughly the same generation or older than your doctor. Your ideal relationship will last for your entire life. Both Hoffman and Abdou (sp?) are older gentlemen, closer to retirement than not.

[JanW]

Phil, medicine is organized differently in different countries and I do believe that immunologists in Europe are more like rheumys here. Not sure about Canada. There was one clinician who was an immunologist at Boston and had been recruited there by Merkel (rheumy) and they work as a team. But Sangye is right, and indeed, these guys would say it -- ideally, the rheumy isn't going to look up your nose and tell you that you are havng a flare, and your neph won't be trying to figure out your bloodwork except as it relates to your kidneys. Please understand that this has nothing to do at all with qualifications or quality of any particular doc but merely than in diseases with so many complications, each 'system' needs its own expert.

[Jack]

I believe that our forum and its members have a great deal to offer to the VF. Does anyone know how we could establish a connection? Assuming that their web site is visited by doctors, even just including a link on there back to the Forum would be useful.

[LisaMarie]

Hoffman seems terrific and he was definitely a mentor to Langford and Lebovics, just to name two that passed through his clinic back in the day. He also just joined the board of the VF.

You may want to consider going for Langford, however, who is younger. I'm not sure of how old you are, but it's somewhat ideal if you have vasculitis to be of roughly the same generation or older than your doctor. Your ideal relationship will last for your entire life. Both Hoffman and Abdou (sp?) are older gentlemen, closer to retirement than not.
Did you get to hear Dr Abdou's speech...he is an older gentleman ...very wise but as you said close to retirement or doing more research than hands on care...atleast that is the impression at the his office.....zi am hoping the younger doc I have will listen and follow thru.....Did they discuss heart envolvement at all?

[Palmyra]

I believe that our forum and its members have a great deal to offer to the VF. Does anyone know how we could establish a connection? Assuming that their web site is visited by doctors, even just including a link on there back to the Forum would be useful.

I would assume that would be up to Andrew to address?

I do agree Jack, that this forum has much to offer. We have many on this site with broad experience, and excellent navigating skills. I was originally directed to a Yahoo support group when my daughter was first diagnosed, but found this group only recently.

I think it is as simple as calling or e-mailing 'Joyce,' the famously nice lady at the Vasculitis Foundation, and telling her about this group. She will be recovering from hosting the symposium, so one might want to give her a bit of time before making contact.

[JanW]

Yes. I don't know how eager they are to link to anything--as a grassroots organization they listen very carefully to what their members say and when I went to the leadership meetings (prior to the conference; these people are all members of the organization), I found some to be openly resistance to any kind of internet communication, even in terms of getting their own message out. Many of them are older -- it seemed to me to be more a generational position than a defensible one. Certainly the membership here has the kind of view that VF would like to promote -- we are well informed. I don't see the kind of clearly wrong information that I have seen posted at other places.

As to the heart, VF involves 15 diseases, some of which are more likely to involve the heart, so they didn't really focus on it in WG, except to remind people that WG can effect any organ.

[JanW]

I did see Dr. Abdou and I met some of his patients. To their knowledge he is not turning over his cases to a protege, which leaves others in a precarious position. He was the moderator of a panel that my surgeon was also on. He seemed "close to retirement" and I think that you can all figure out what that means. I'm not going to slam a doc that was one of the titans in figuring out these disease but there he answered a few questions twice, didn't stick to his own ground rules for discussion, that kind of thing. Hard to know how much of that is personality of course, but I heard similar tales of forgetfulness from patients.

[pberggren1]

I would prefer a younger doc my own age, 34.

[Sangye]

Yes. I don't know how eager they are to link to anything--as a grassroots organization they listen very carefully to what their members say and when I went to the leadership meetings (prior to the conference; these people are all members of the organization), I found some to be openly resistance to any kind of internet communication, even in terms of getting their own message out. Many of them are older -- it seemed to me to be more a generational position than a defensible one. Certainly the membership here has the kind of view that VF would like to promote -- we are well informed. I don't see the kind of clearly wrong information that I have seen posted at other places.
Our group really sticks to the research and exactly what the VF docs say. Whenever we get new info from the VF docs like with the Symposium notes, we incorporate that into our advice to members. I think if they knew that their fear might be alleviated.

I've seen bad stuff out there, too. It seems to come from Weggies who don't see VF docs and/or don't understand the disease, drugs, test, etc... well enough to convey it accurately. It can really cause harm.

[Sangye]

I'm continually grateful that Dr Seo is about my age. This is a long-term relationship.

[Brooke]

Thanks Jan for all the informations! That would be awesome to attend! Do you know when and where there is another one?

[elephant]

Thanks JanW, then next one is 2012...but don't know where?

[Aunnie]

Thanks JanW for the info.
Im so glad you were able to attend.
Keep the info coming.

Aunnie

[JanW]

They didn't announce where the next one is yet. The speculation is that it will be in the midwest or East Coast.

[elephant]

Yahoo! Hopefully closer to the midwest so everyone can come.

[jola57]

Jan, thank you for your notes, I was so sorry that I wasn't going to make it in time for the symposium. Having your notes posted makes me feel like I was there. Enjoy your vacation and happy times

[Tulip]

The Vasculitis Foundation and NIH will be posting or linking to the videos recorded at most of the sessions. It won't provide the benefits of being there and getting to talk to the specialists after the sessions, etc., but it will give those who couldn't attend a lot of the information we received.

[Hammy8241]

The Vasculitis Foundation and NIH will be posting or linking to the videos recorded at most of the sessions. It won't provide the benefits of being there and getting to talk to the specialists after the sessions, etc., but it will give those who couldn't attend a lot of the information we received.


That will be great thanks tulip. Looking forward to them.
Chocolate bar for the first member to spot our JanW:)

[JanW]

Heh. Since I was the only black female patient there, and the only one with a saddle nose, that would be like shooting fish in a barrel!

[elephant]

I wonder why more Caucasians get wegeners instead of African Americans? I keep seeing how rare it is?

[JanW]

Not as rare as we think, elephant. Another myth debunked at the symposium...it is diagnosed in all races, although it slight favors European whites. I'm sure the difference is in how rarely it is being diagnosed, particularly since no docs think that blacks and Asians can even get it! I saw all races represented at the conference.

[elephant]

Wow, and the literature that I read on the Internet is different. Glad you got to hear and see it first hand. I guess we all have alot to learn from the disease.

[Hammy8241]

Heh. Since I was the only black female patient there, and the only one with a saddle nose, that would be like shooting fish in a barrel!

Good clues there JanW. lol. How many people there then? In my mind I expected 100s if not 1000s of people.

[JanW]

I think 350 and many of them were parents/caregivers or people with other vasculitides. There are 15 diseases under the VF umbrella. When you see everyone in a room you realize how blindingly rare these diseases are.

[Doug]

I know you didn't go for the glory, so I hope you don't mind yet another hearty "thanks!", as many hugs as I can give over the internet before Andrew's website cuts me off (five, isn't it? ~ we'll see >hug< >hug< >hug< >hug< >hug< >hug<), and a "well done". Not only are your reports informative and encouraging, they are written clearly, well, and in great detail. You could have been a journalist!

The news that you don't have to be Northern European stock to be eligible for initiation into the WG club isn't good news, yet it is similar to what ornithologists note about birds: don't be surprised when a "rare" bird shows up in your backyard ~ because birds don't look at distribution maps to see where they should be, ornithologists and birders/twitchers do. Similarly, records show more migration occurs on the weekends and holidays ~ because more birders are out then watching for migrating birds then than during the weekday! More doctors and researchers on WG issues live in areas predominantly populated with Northern European stock, so, hey, mostly whites get WG!

Jan's reports start to show what everyone should understand by now, there is just one race, the human race.

[elephant]

Well put Doug.

[me2]

JanW, you just gave away a sure chance at a chocolate bar - the rules did not exclude you from identifying yourself to claim the prize. Doh'

[JanW]

Doug, I AM a journalist, so I'm glad you think my reporting is up to snuff!

[Doug]

OK! I thought you were a nurse, but this revelation explains it all! More >hugs< to you. You are adding so much of value to the commentary on this site!

[pberggren1]

JanW your reporting is A1. By the way, who is winning the race?

[JanW]

Thank you, Doug! Love reading your posts too!

[JanW]

Just got an email that said some of the presentations will be available on the VF's website starting Friday, August 13.

[elephant]

Yahoo! Thanks JanW for that info.

[Doug]

[Thanks !~|

[eileenv]

Hi Jan, i found your notes very intresting and imformative, i wish we had something like this in the UK. It really made me think when you mentioned the docters not afraid to say they don't know there are not many like that. Hope you enjoy your holiday. Kind regards E

[Col 23]

Thanks Jan for taking the time and effort to post the info. Much appreciated. Very informative, I really hope I can go to the next one.
cheers Col 23

[JanW]

Had my regularly scheduled follow up visit today with my rheumy, who was very interested to hear what went on at the conference. We had an interesting dialogue, especially in regards to long-term immunosuppression. I can tell that he's not a total buyer of the 'remission is random' theory, and frankly he raises a good point about this all being a moving target because any population group of wegs patients is so vanishingly small. He did agree that the relapse rate, in his experience, is much higher than websites would have you believe (he thinks it's not a coin toss -- basically most of his patients relapse at least once).

[elephant]

Thanks for sharing JanW. Love to learn. :)

[Sangye]

Very interesting, JanW. I'm looking forward to my next conversation with Dr Seo. He's never mentioned the "remission is random" theory and I wonder what his thoughts are about it.

[JanW]

The big one pushing that was Dr. Paul Monach (Boston) who is more research oriented (although does see patients with Dr. Merkel). And the docs certainly weren't as insensitive as I am being by saying it's random (but I know you know that). He said something more like, "We don't have any really good evidence to support why most people relapse and some people don't." The German neph from UNC (whose name escapes me now), was the one that offered the line about being treated every day for a sinus infection you *might* get five years from now, which I thought was very apropos and really put things on a laymen's level. You can imagine, though, surely, how tough it's going to be for most rheumys to admit that maybe, just maybe, there isn't a whole lot you can do to prevent a flare -- that lack of control is very, very scary.

And, you have to remember, as I am sure you have heard, that if you put two rheumys in a room you'll end up with three opinions! I wouldn't be surprised at all if Seo had a completely different 'gestalt' as the docs like to say, about wg and remission.

[Sangye]

I do know that Dr Seo is very conservative about using any drugs. I was sure he was going to put me on Cellcept after the last round of rtx. I never would have imagined that he'd say I could go a year without being on anything before repeating the rtx.

[elephant]

Sangye I am so glad you don't have to go back to cellcept. So things have changed in their thinking ( remission without drugs). I wonder why I still have to be on 4 meds? That may change, hopefully soon.

[Sangye]

Well, I hope I can stay off Cellcept, but it's all trial and error.

[LisaMarie]

Jan
did they mention heart wall involvement? Just curious....i have some heart wall changes....it is concerning since it a thickening....will be doing echos every 3 -6 months

[JanW]

I don't recall anything about that specifically -- however, there were several concurrent sessions, and I only went to ENT (not lung, kidney, gastro, etc.). They didn't have a specific session on heart involvement, however, it could have been mentioned in the lung session.

Keep checking back on the VF site, things will be posted there.

[Sangye]

Lisa Marie, is your heart wall thickening due to working harder, as in ventricular hypertrophy?

[LisaMarie]

Lisa Marie, is your heart wall thickening due to working harder, as in ventricular hypertrophy?
no it is in the intraseptal wall....sorry for spelling errors ....not feeling to well....i did not have it last fall and i do not have high b/p......of the left ventricle.....my ef is 55% so it is working effectively ...just concerning as WG is a sneeky un predicable beast....so we are going to watch it...if I do not get a fever i can still continue my rituxan...on friday....so i pray no fever and this stupid cough leaves soon....since i increased my sinus rinse the sputum is turning more yellow so i am head ing the right direction....going back to bed I am wiped out,,,,,

[Sangye]

Oh, that's great news about the rtx! I think it'll clear up with what you're doing. Rinse, repeat, rinse, repeat.... :)

[Doug]

Good to read you are headed in the right direction, Lisa Marie!