PAN / Vasculitis Chat
Sunday, July 16th, 2006
KEY TOPICS DISCUSSED:
Ed: PSN Moderator
Gary: Vasculitis patient
Cindy: MPA patient
Dr. Eric: PSN Chief Medical Advisor
Don: PAN patient
Charlotte: PAN patient
Cindy: I am from the Chicago area. What part of MN are you from Gary? Do you go to Mayo?Gary: No i go to the VA--docs are from University of MN. Cindy, do you have PAN?
Cindy: Gary--I have MPA or microPAN. Are you familiar with it?
Gary: no what is it?
Cindy: It is similar to PAN except it involves the small vessels as well.
Gary: It has taken a lot of determination. took me almost two years to learn how to walk
Cindy: But you did it!
********** at 8:42 PM Dr. Eric joined the room
Dr. Eric: Hello, everyone!
Dr. Eric: Right now they are for autoimmune disease in general, but we are targeting specific diseases, including vasculitis
Cindy: I am impressed--It must take years of research to develop such a test
Dr. Eric: yes, we've been at this for over 5 years... and it will be a few more years before we can specifically say "PAN" or "MPA" or "Churg-Strauss".
Cindy: Thank goodness for people like me that there are people like you. My docs have made it very clear that thirty years ago, I would be looking at a very different story.
Dr. Eric: ...but we're getting there!
Ed-moderator: Dr. Eric, Cindy..I was telling Gary about that speaker last Sunday discussing the eye problems arising from vasc
Cindy: Ed-I missed that session which was too bad since whether or not I have eye issues is debatable.
Dr. Eric: Ed, it depends on whose classification system you look at. Some say PAN and MPA are the same, just affect different vessels... others say they are distinct diseases.
Cindy: I have been told it is different. It was classified in 94 at Chapel Hill. Before that it was lumped together. That was my impression.
Dr. Eric: Cindy, yes, that is the current thinking of most, but I heard Dr. Stone say at one point that there isn't much difference. I have looked at biopsy slides from both diseases, and there isn't much difference at the cellular level
Ed-moderator: It's essentially doing the same thing..destroying the vessels, right?
Dr. Eric: yes, there are very aggressive cells that are attacking the cells of the blood vessel wall... and a strong immune and inflammatory reaction at that point.
Gary: The eye doctors say there is nothing wrong with the eye itself, it's behind the eyes. Dr. Eric is it pressure on the eye itself or the optic nerve? Not on the tumors are located on the muscle behind the eye
Cindy: MPA affects the small vessels like the capillaries and In MPA it affects the small vessels--capillaries I believe
********** at 8:57 PM Don (guest) joined the room
Ed-moderator: Hello Don..welcome. Cindy for Chicago, Gary from MN, Dr. Dr. Eric from Texas..
Don (guest): Hi everyone just keep on your subject I'll join in
Ed-moderator: Isn't there a vasculitis that attacks the eyes..scholderma..sp???
Dr. Eric: scleroderma attacks multiple organ systems including the eyes
Ed-moderator: I thought it was really incredible that docs can implant that tiny device that helps produce tears
Cindy: Is scleroderma vasculitis?
Dr. Eric: scleroderma includes vaculitis as one of its features, but it attacks muscles, skin and organs... lots of fibrosis.
Gary: what i am to understand my white blood cells got out of control and ended up killing everything in their path and plugged the vessels.
Dr. Eric: Gary, that is the great question... why do the WBC go nuts like that
Gary: my white blood count was at over 200,000 at the height of my disease
Cindy: Whoa Nelly!
Gary: they lose their ability to regulate themselves
Cindy: I think every vasculitis patient ultimately wonders that very thing-what happened to set things off?
Ed-moderator: absolutely, Cindy. I think the hard thing is to accept that no answer may ever be known or no ONE answer
Dr. Eric: And that is the major topic of our research...what are the triggers of autoimmune diseases?
Cindy: Funny though, I think back on every thing that I did differently and avoid it
********** at 9:04 PM Charlotte Williams joined the room
Ed-moderator: from where?
Charlotte Williams: I am from Oklahoma
Dr. Eric: where the wind comes sweeping down the plains...and brings more heat to Dallas!
Cindy: Charlotte, if I recall you are fairly new to PAN
Dr. Eric: Not personally, but I know of many vasculitis patients who have had surgery
Charlotte Williams: They said I had polyarteritis nodosa aprox 2 1.2 years. Is there any precautions I should take before surgery?
Gary: the docs always put me on antibiotics 3 days before and procedures
Charlotte Williams: Yes, I am on 10 mg. now. I have been on 60 and they are cutting me back I also take 125mg. cytoxan. They did say they would start antibiotics because there is an extra chance of infections.
Dr. Eric: Gary, yes hepatitis viruses are a known factor
Gary: try to convince the army of that!!!!
Dr. Eric: Gary, the problem is that there are many people who get hepatitis and don't get vasculits, and that the majority of vasculitis patients never have had hepatitis... the Army just looks at statistics, not individual patients
Ed-moderator: Gary, you mentioned in a post about others in corps doing drugs, right. I think someone asked this..hep C is transmitted by blood, right Dr. Eric?
Gary: there are guys at the va where i go that have diabetes and hepc is starting to show positive after all these years.
Ed-moderator: Can Hep C lie dormant for many years and then erupt?
Gary: illicit drug use was rampant at the time. yes ed it can as far as i know they can only test to see if you are positive
Dr. Eric: Ed, yes, that is a common clinical course... a limited acute disease at the time of infection, and then chronic disease years later
Cindy: Would you still show antibodies?
Dr. Eric: yes, the antibodies persist for years... with hep B it is a complex profile, but you'd still be positive. both hep B and hep C are transmitted by blood and sexual contact... body fluids, basically
Ed-moderator: question about a slide from one of the presentations.....
Gary: anyone that had any blood transfusions while in Vietnam has about a 90 percent chance of having had bad blood
Ed-moderator: New Approach to treatment...Lamivudine, Prednisone short course, and Plasmapheresis short course..RESULTINGEd-moderator and here's my question...RESULT: VIRUS GONEEd-moderator confused..he isn't saying that PAN is a virus that is wiped out. did this connect to HEP C connected to PAN?
Dr. Eric: I'm not sure of the context... was this in regard to hepatitis associated PAN?
Ed-moderator: I guess so, but not stated here
Cindy: I think he is referring to the Hep virus--he said that if they can take care of that they can basically "cure"
Ed-moderator: ahhh, I think you are right, Cindy. just so no confusion for folks..PAN is not a virus
Dr. Eric: PAN is NOT caused by a virus... but the hep viruses may be a trigger
Gary: One of my rumys at the va does a lot of research in connection with Univ. of Minnesota she says that i got this disease instead of HEP C
Cindy: "cure" the PAN if the HEP was associated with it. That is what I recall from the lecture
Dr. Eric: another regimen that has been used with some success is interferon and anti-viral drugs... I think that Ron in this group had that treatment
Ed-moderator: What does RAVE mean...RAVE status
Cindy: Rave is a study that they are doing with Rituxan
Ed-moderator: Rituxan is showing a lot of promise?
Cindy: This drug depletes the B cells which work with the T cells.
Gary: they have had some trouble at the va with interferon and people that have diabetes
Dr. Eric: Rituximab for ANCA-associated Vasculitis
Cindy: Yes! They said that it is early and a randomized blind study but the high percentage of people doing well suggest it must be working
Ed-moderator: Does a negative ANCA mean no vasculitis?
Dr. Eric: Ed... Absolutely NOT!... even in WG, about 10% of patients are ANCA negative.The ANCA test was a topic at the speaker's dinner... we all agree that it is a help, but not the only thing to look at and the ANCA depends a lot on the lab that is doing it
Charlotte Williams: What is normal for ANCA?
Dr. Eric: charlotte... normal is negative... abnormal ispositive, but a positive requires more lab work to make sure
Ed-moderator: Gary...Dr. Dr. Eric actually goes into a lot of detail about the ANCA test on www.pansupport.org under ASK Dr. Eric. So results are very lab dependent?
Dr. Eric: Ed, yes, that was another topic at the meeting...anthere are no recognized standards, so one test may be looking at something different from another test
Ed-moderator: down to final questions....I heard the term "spontaneous remission.."This confuses me...isn't every remission in a sense spontaneous?
Dr. Eric: Ed, that means "you got better in spite of your doctors and the treatments"
Ed-moderator: I mean, you can't plan out a remission..right? It happens when it happens
Gary: how long before a person is considered in remission
Ed-moderator: There's nothing you can do to bring on a remission..except the standard treatment
Cindy: I thought a spontaneous remission was when the body healed on its own without drugs????
Dr. Eric: most docs use that term when a patient has not been responding to treatment, but suddenly goes into remission
Ed-moderator: Well, in this case they meant a PAN patient suddenly goes into remission
Dr. Eric: should be DOCS!
Cindy: Oh, Gothcha!
Ed-moderator: Are there any studies that show predictable factors for remission patients..age, gender, etc?
Dr. Eric: Ed, not that I'm aware of
Ed-moderator: common denomin among PAN patients in remission
Cindy: I know that Dr. Falk did a study recently with Anca positive vasculitis inbthe kidneys
Ed-moderator: just curious..
Cindy: Should be study
Dr. Eric: the only common denominator that I know of is that they are all human
Ed-moderator: so focused on trigger that causes it, why not focus on trigger that may bring on remission..
Gary: I've been told that it takes 26 to 30 months without a flair to be considered remission
Ed-moderator:In theory there could as easily be one as a trigger that causes it right?
Dr. Eric: Ed, yes there is interest in that, too... but if we know what brings it on, we can block that and bring on remission (we hope!)
Ed-moderator: I think..don't quote me on this but
Cindy: I think remission means different things to different docs. I have been told I am in remission and I have only had this one year.
Ed-moderator: I think that is some of the focus with Vasc.Consortium studies
### End of Chat###
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