PAN/Vasculitis CHAT

DATE:  May 4, 2008

Participants:

Ed:  PSN Moderator

Dr. Eric Hoy: PAN advisor

Mary: RN & PAN volunteer

Cindy: MPA patient

Sheldon: PAN patient

Travis: PAN patient

Kim: PAN patient

Key topics discussed: General discussion regarding PAN and autoimmune disorders.

Ed Moderator: We'll start in a bit.

Dr. Eric: Hello, everyone!

Ed Moderator: How are things going? Have you been traveling much lately, what conferences have you attended lately?#

Dr. Eric: Interesting work on our campus (not my lab, though) looking at regulatory T-cells and how they keep B cells from going crazy.#

Ed Moderator: Can you share a bit about that?#

Dr. Eric: There are a group of T cells that regulate B cells, so that the B cells won't produce antibodies against self, autoimmunity may be a failure of the T regulatory cells.#

Ed Moderator: What is the status of your diagnostic test?#

Dr. Eric: Still grinding through the FDA, we're hoping for the end of June now.#

Ed Moderator: So the current phase is FDA approval? And then when you

get it, what then?#

Dr. Eric: It's working great in our lab, but we can't sell it until the FDA gives their blessing. Then the marketing guys take it to the hospital and clinical labs all around the world.#

Cindy: Will you sell it to other labs, doctors or what?#

Dr. Eric: Cindy, it will go the labs, the physicians will order the tests, but the labs will use the system.#

Ed Moderator: Just curious, when you have something in this phase, where everything is hinging on approval, how much advance work do the marketing and sales people do? I mean are they busying readying a campaign even though it's not blessed yet?#

Dr. Eric: Oh yes, Ed! They bug me every day to get the FDA to move faster, that's like asking that  the IRS will be more compassionate!#

Cindy: Impressive!#

Ed Moderator: Also, how much competition is there on something like this? As you folks work on it, are there other labs, or schools also trying to develop the same thing? Is it a race to whomever gets to the FDA first?#

Dr. Eric: There are a couple of systems that are similar, but they are much more expensive for both the lab and the patient. We will actually REDUCE costs with this new technology.#

Ed Moderator: Travis, go ahead and tell us how you're doing?#

Travis: Guess I am doing ok, not sure until I hear from the doctor.#

Cindy: How long have been dealing with this flare?#

Ed Moderator: Travis, for our readers who see the transcript, please refresh us on yourself and your situation; where you are from, when were you diagnosed, etc?#

Travis: Ok, I first got PAN back in March 2006, was on Prednisone and Cytoxan for about a year. I have been off all meds for about a year until now. From my tests so far, my CRP is high.#

Ed Moderator: Do you know the readings on your CRP, Travis?#

Travis: 54.71.#

Ed Moderator: Eric, what do you make of Travis' CRP score?#

Dr. Eric: A normal CRP is less than 10mgL. I assume that is the units of Travis' test.#

Sheldon: Hi everyone!#

Dr. Eric: Hi Dr. Golub!#

Ed Moderator: So, that's a fairly high reading then?#

Dr. Eric: Ed, yes, I would consider that elevated.#

Ed Moderator: Travis, tell us about your flare? When did your symptoms start and what were they?#

Travis: Swelling in my feet and legs. I thought I had an infection in my left foot. Then two weeks later, I could hardly walk with leg pain and arm pain. I thought I was getting the flu.#

Ed Moderator: Did you run a fever, Travis?#

Travis: Yes. Would you like to know what my CBC is? My white blood count is 11.6 and monocytes are 1.1.#

Ed Moderator: What does that tell Eric from that number about Travis?#

Dr. Eric: A WBC of 11.6 is high, but not astronomical, it may indicate an infection.#

Sheldon: Has anyone had flare after two years?#

Dr. Eric: Dr. Golub (Sheldon), I know several patients who had remissions of two years or longer and then flared. Rare, but it happens.#

Ed Moderator: Hello Johmanda, welcome to our PAN Chat. Please give your first name and where you're from. It's a bit freewheeling tonight, but Travis is sharing with us about his flare.#

Johmanda: This is Kim from Florida.#

Ed Moderator: Welcome Kim, glad you could join us. I'll be asking you to share with us shortly. NOTE: Please type a # when you're done typing so the next person can go.#

Mary: Dr. Eric, with the WBC, don't you look at the lymphs/band, etc for infection?#

Dr. Eric:  Mary, yes, the differential is important. I think Travis is sending that one at a time.#

Ed Moderator: Eric, can you explain what you were saying to Mary, the differential?#

Dr. Eric: The differential is the distribution of white cells; lymphs, segs, bands, monocytes.#

Travis: Well, if someone wants to give me an email, I will send it in PDF format.

Dr. Eric: Travis, send to EricHoy@UTSouthwestern.edu.  Travis, even normal values are important. What are the lymphs and segs?#

Ed Moderator: Anything else to add Travis? We wish you luck on having the flare brought back under control.#

Ed Moderator: Let's chat with Dr. Gould. Tell us where you're from and a bit of your backstory with PAN. When were you diagnosed, current treatment, how you're doing, etc.#

Ed Moderator: Are you there Dr. Gould? I suspect net traffic is high tonight and slowing things down a bit. We'll do 30 more seconds and then move onto Kim. Are you able to read the discussion, Kim? Everyone? Folks having any tech issues?#

Kim: Yes, I am able to see the discussion.#

Ed Moderator: Okay, Dr. Gould, we'll circle back to you in a few. Right now, I'll turn it over to Kim. Kim, are you new to the group? Do you have PAN? If so, when were you diagnosed?#

Kim: I have been a member of a yahoo group for about a year, I think, but I'm a lurker. I started with a horrible rash in '94 that would come and go and only Prednisone would cause a decline in the rash and the itching. After 10 dermatologists including the USF derm, clinic and 10 biopsies, vasculitis was the diagnosis. I am now on Methotrexate and everything is under control.#

Ed Moderator: Kim, let me understand this correct. 10 biopsies? I've never heard of having so many to a diagnosis. Is that common? Eric, any thoughts on that? Does it usually take the many?#

Dr. Eric: Usually, it takes fewer biopsies, but 10 is not excessive, especially over a long period of time.#

Kim: Nobody was looking at vasculitis, they were looking for RA or Lupus or bulbous pemphigoid or anything but.#

Mary: I may be facing the same thing.#

Kim: My sed rates were always high but they just "assumed" there was an infection somewhere and prescribed antibiotics.#

Ed Moderator: Yep Mary, I was thinking that too, Kim. I assume the biopsies were done in different locations on the body?#

Kim: The final biopsy was apparently deeper than any of the others and showed the vasculitis. Actually all of the biopsies were on different areas of my legs, however, they were always of lesions that were old, and the last biopsy was of a new lesion that I had not yet scratched into oblivion. They also tried to tell me it was all in my head and had me on Paxil and Xanax and sent me to a shrink.#

Mary: I think they do that to all of us, Kim.#

Ed Moderator: What a sad, common story Kim. How are you doing right now Kim?#

Kim: My frustration now is that I don't really know what type of vasculitis I have, but based on the symptoms I have read about, I truly think it's PAN.#

Ed Moderator: Mary, you may have found a kindred spirit with Kim.

Sounds so much like your situation.#

Kim: I am doing well, thank you. I keep pushing myself to keep going. I know that I am not nearly as bad as many on the yahoo group. I raise and show and compete with my dogs and that gives me more encouragement than even my husband.#

Ed Moderator: So, it's under control for the most part?#

Kim: In April, I did a 10-mile hike with one of my dogs. I was really pooped out for about a week but then all was good. Yes, I am doing well and only occasionally have a minor skin flare.#

Dr. Eric: Sorry that I have to go, when we're having a great discussion, but I'm on call this weekend and I need to go to the lab.#

Ed Moderator: No worries, Eric. Thank you for being here.#

Mary:  Take care Dr. Eric!#

Cindy: Thanks Eric!#

Dr. Eric: See you all next chat.#

Ed Moderator: Cindy, how have you been doing?#

Cindy: Fantastic! I have become a boring patient once again!#

Ed Moderator: Cindy is in Chicago. By the way, Kim, what part of Florida are you from?#

Kim: I am in the Tampa Bay area.#

Ed Moderator: A boring patient, you must be happy and your doctor happy as heck. Cindy, you have MPA, correct?#

Cindy: Yes, it kind of takes a little getting used to-in a good way. But I also went through the diagnostic saga.#

Ed Moderator: Well, I hope I included everyone in tonight's discussion. It has been really good.#

Ed Moderator: Mary, you will find out more this week, right?#

Mary: Well, hopefully!#

Ed Moderator: Saga, perfect word for the process.#

Kim: Amen to that.#

Ed Moderator: Well, everyone, I'm going to sign off now and I thank you all for joining in.#

End of chat.


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