PAN / Vasculitis Chat

DATE: 

Participants:

Ed:     PSN Moderator
Peter: PAN Group Member

Deanna: PAN Group Member
Dr. Eric Hoy – Immunologist


Ed Moderator:  Hello Dr. Eric.  Back from Sweden?

Dr. Eric: Yes, just got back last night

Dr. Eric: Peter, how are you doing on this Monday afternoon?

Ed Moderator:  So tell me about Sweden.  How was the trip, highlights?

Dr. Eric: Interesting meeting in Sweden... some new ideas in ANCA testing that might expand the number of ANCA positive vasculitis diagnoses

Ed Moderator:  Was this an international symposium?  You were one of the speakers, right?

Dr. Eric: All Scandinavian except for me... this is the ninth time I've been invited to this meeting

Peter: Dr. Eric what does that mean for those of us who have different outcome from tests than expected?

Dr. Eric: Peter, it may mean that we will have an early diagnosis test for PAN or other forms of vasculitis.

Peter: Would it help me with an earlier diagnosis of the MS?

Dr. Eric: kind of like we have MPO and PR3 for WG, CSS, and MPA now

Ed Moderator:  So this is a test that goes further than the ones now...or diagnosis more accurately?

Dr. Eric: new markers that haven't been described before... beyond MPO and PR3

Ed Moderator:  Have to ask - sorry :-)  Please explain MPO and PR3.

Dr. Eric: MPO and PR3 are frequently positive in WG, CSS, and MPA... nice lab tests to help make the diagnosis

Peter: thank-you Ed that was my next question

Dr. Eric: We don't have anything like that for PAN and other forms of vasculitis, yet!

Ed Moderator:  exciting.

Ed Moderator:  Is this research being done here or abroad 

Dr. Eric: both... mostly in Germany, but some US researchers involved too

Ed Moderator:  So with news like this, how soon before it would be on the market.  I know that's an unfair question with so many Ifs.   But, I always wonder what happens with exciting developments like this and what happens from lab bench to doctors office.

Dr. Eric: It might be a few years... it might turn out that it doesn't work... that's one of the problems with research...

Ed Moderator:  And you gave a presentation, Eric?

Dr. Eric: Yes, I talked about our new system, and also gave a seminar on testing for autoimmune diseases for the lab people who were there.

Peter: Dr. Eric, l truly admire the work you do

Dr. Eric: Thank you, Peter... I admire your strength in the face of this disease and the terrible problems you have had with the health care system

Ed Moderator:  Now, is this new to the audience or were most of them aware of the work you're doing.

Dr. Eric: Our new system is new to most of them... the all-day seminar is a review and update for people who are already doing the tests in the lab.

Ed Moderator:  Forgive me for asking you to do this but we have so many new people.  Can you summarize a bit what it is you are doing and the importance of this test?

Peter: All of that is in the past. I am more excited in hearing about this progress forward no mater how long it takes

Ed Moderator:  Great attitude Peter.  That's why you are hanging in there - not holding onto the past injustices that you had to go through these ordeals is inexcusable, but you have to let go and move forward.  I'm trying to follow that advice right now from my job loss.

Peter: I just don't want it to happen to others

Dr. Eric: The new tests system can test for multiple antibodies in a single test tube... right now, it is set up to test for 10 antibodies. Instead of 10 separate tests, at $40 each, we can do all of them at once for about $25.

Peter: Every seminar ad every cent of research money spent is important

Ed Moderator:  Thanks Eric, that helps.  By the way, is there anything on the net I can look up for additional info? If I were to “Google it” for more info, could I find it?

Dr. Eric: Nothing specific about our system on the net yet, until we get FDA approval... you can look at the technology if you look for "Microarrays"

Ed Moderator:  Sure...thanks.  So I think you said that basically waiting to see what the FDA will be doing in new administration.

Ed Moderator:  How the new admin funds FDA or new research in this economic climate I just wonder the impact on NIH and other such agencies.

Peter: Dr Eric will doctors accept this as a way of diagnosing better or will they remain locked into their present ways?

Dr. Eric: I think the docs will like it, because it will give them a complete profile... the reimbursement people will push for it because it costs less

Dr. Eric: Yes, the FDA has a big backlog of new diagnostics to approve. They want more money - who doesn't?

Ed Moderator:  Wait a second, I have to ask this. Can the FDA get bailouts too?

Ed Moderator:  seriously

Ed Moderator:  oh wait. They’re non profit..:-)

Dr. Eric: The FDA is looking for a bailout, for sure!

Ed Moderator:  Really?   I was half kidding

Peter: Then wouldn't the drug companies want to contribute?  Also the insurance companies too, less cost and less payout.

Dr. Eric: Something most people don't realize is that the drug companies have to pay a couple of hundred thousand dollars, for every application they send to the FDA... beyond the taxes we put in

Dr. Eric: Insurance and Medicare will love this system

Peter: I think us patients will too

Ed Moderator: When you say this system, I am not sure I understand.  You mean the way the current admin will be running health care?

Dr. Eric: No, I'm talking about our diagnostic system... it's called MicroZyme... it is a microarray for multiple antibodies

Dr. Eric: The proposals for national health care will probably be a disaster, like most government programs

Peter: Will the labs have to change equipment and such?  If so, will the government foot the bill?

Dr. Eric: Peter, the equipment will cost about US$5000 (a drop in the bucket for lab equipment)... the tests will cost about $25 for the whole profile.

Ed Moderator:  government = taxpayers..:-) 

Ed Moderator:  But the labs have to pay for equipment themselves. They don't get if through the government, right?

Peter: Hopefully we will not have to wait an eternity to reach us down here.

Dr. Eric: For a big lab with very high volume of tests, the fully automated system is about US$23,000.  Peter, we already have a distributor in Australia.  As soon as the FDA gives their approval, the system will be available around the world

Ed Moderator:  awesome

Peter: great, just what l want to hear

Dr. Eric: One of the competitors has a similar system that costs $250,000

Ed Moderator:  Whoa. Look whose here, Deanna!

Peter: hello Deanna

Deanna: HI!!#

Dr. Eric: hello, Deanna!

Ed Moderator:  We didn't get to talk to you much last week, Deanna.  How are you doing? What's happening with you?

Deanna: I have written Cameron a few times...he's a blessing, meant person

Peter: yes he is and l love him dearly

Deanna: I have a surgery date set up on Feb 17 to remove 3 tumors in my throat. Rituxan treatments begin again Feb 23#

Ed Moderator:  oh no... 

Dr. Eric: Deanna, what kind of tumors?

Deanna: The Rituxan seems to be working.

Peter: l wish you all the best for this Deanna

Deanna: Well, the sonogram showed tumors not goiters, the aspiration biopsy was inconclusive.

Ed Moderator:  In that case they remove just to be sure?

Dr. Eric: Are they in the thyroid?

Deanna: One tumor is completely covering the left thyroid lobe, so it will be removed, the other two are on the right lobe, possible removal

Dr. Eric: Best to get them all out of there... thyroid function can be restored by a pill.

Deanna: Yes, they will do a frozen specimen to see if malignant or benign...the good thing that once tumors are gone, even if cancer, they are gone for good...no metastasizing...I believe

Ed Moderator:  That's encouraging about the Rituxan

Deanna: Yeah, another pill a day will not bother me in order to have full thyroid function again

Ed Moderator:  How many total treatments will you get?

Deanna: I'm very pleased with the Rituxan, except very expensive.  I have 2 a month every 5 months. My MPO and Anca have gone down from 1264 to 160...major drop after 4 total treatments

Ed Moderator:  How do you get the treatments, Deanna?  I mean are they shots, IVs, oral?

Peter: What sought of treatments are they if you don't mind me asking

Deanna: Although in order to get approved for financial aide, we had to diagnosis  me with RA fist with vasculitis secondary.  I receive 1000mg prednisone IV then IV Rituxan infusion that takes about 4-5 hours.  Very little if any side effects.  The day of and after I feel a little flu like, but after that, I'm good to go

Peter: very intense

Deanna: I believe I'm getting 1 gram Rituxan infused during each session...I think

Dr. Eric: yes, 1 gram sounds right... usually in 500-1000 ml of IV fluid

Deanna: There are some pretty bad side effects with the Rituxan, but I haven't had any.  It's like a last chance treatment for me since I can not do cytoxan, methatrexate, plaquinil, and all the others

Deanna: yes, that is correct

Deanna: It's working for me, I am amazed.  Not just working because of the lab results, but because my body feels the difference.  I'm having more good days than bad days.

Deanna: I try to keep up with you. You encourage to me

Peter: Deanna l am fine, now adjusting to the colostomy bag and other things , just tying to get on with the best life possible

Ed Moderator:  Peter, I don't know if my question came through. But are you doing your show live or recorded

Peter: l truly believe that l am no role model thing but like all of us just doing what we have to

Deanna: Oh, how I understand.  I finally have a wonderful significant other in my life.  He has been a great blessing.  He is really receiving a crash course in this PAN stuff...poor man,

Peter: this week l am happy to say that l am allowed to do it live and will prepare the show this afternoon

Deanna: Peter, I went to your website and added to my favorites, I hope to take the time to listen. My son is fighting in Iraq right now. I'm on line often hoping to hear from him. Right now they are on black out...so

Ed Moderator:  That’s cool...okay, I may have to surprise you and actually phone you. - On-air.  Would that be possible??

Deanna: If you don't mind my asking, what is the time diff. so I know when to listen?

Peter: Deanna l have been blessed also with a wife who has been my rock and a family who never cease to amaze me in the strength

Ed Moderator:  God Bless your son, Deanna.  We salute him

Dr. Eric: Deanna, it is 1:30 in the afternoon on Monday in Australia right now

Deanna: Ed,  wow, I'm sorry to hear about your job and all...just know, you are loved and thought about often and we all hope the best for you

Deanna: thank you Dr. E

Deanna: How is your wife Dr. E?

Ed Moderator:  16 hrs ahead.

Peter: l go to air 11am Eastern Daylight saving time here on our Wednesday, your Tuesday. At present here it is 1-31pm Monday


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