PAN / Vasculitis Chat

Sunday, April 23, 2006

KEY TOPICS DISCUSSED: 
Avascular Necrosis / American College of Rheumatology / Restless leg syndrome / U.S. vs International Doctors Using ANCA as a diagnosis / New diagnostic system for labs

Participants:  

Dr. Eric Hoy (Immunolgist)
Janice (PAN Patient) / Ontario
Shelley (Son has PAN)
Ed Becker (Director of PAN Support Network 2010)

Janice: Good Evening Ed!

Ed_moderator: Hello Janice..

Janice: How are you?

Ed_moderator: Long time, no chat. I'm doing okay, and U?< >Refresh my memory..You re from?

Janice: I m from Ontario! I've had PAN for almost three years now

Ed_moderator: How are you feeling?

Janice: I have sprained my ankle. :>( Eric, I have a question about muscle weakness... Does it repair with exercise? Ever?

Eric: yes, Janice. It will get stronger with exercise, but as long as the disease and treatment are going on, it's an uphill battle.

Janice: I tire very easily. Can't walk more than a block.

Eric: Janice is that muscle pain or fatigue?

Janice: The muscles in my bum hurt when I walk So do my hips.

Eric: in the hips is muscle pain or joint pain?

Janice: Joint pain.

Eric: what does your rheumy say about that?

Janice: My doctor is a renal specialist only (Toronto)

Ed_moderator: Janice do you have a rheumy working with you?

Janice: No. Should I ? Do you recommend any in Toronto? Or in Ontario?

Eric: Yes, I think any PAN patient should have a rheumatologist. You might ask him/her about the possibility of avascular necrosis... it happens with long-term prednisone treatment.

Janice: I'm down to less than 4 mg daily now...Janice: I borrowed a book from your library (based on the 1850s) that noted in autopsies of PAN patients kidney and muscle damage

Eric: Since PAN affects so many systems in the body; you need someone who looks at the whole picture

Janice: What about a naturopathic doctor?

Eric: Janice, I'd watch out for naturopaths... inconsistent schools, and often treatments that can be contraindicated for an autoimmune patient.

Janice: I will try to get a referral to Owen Sound through my doctor...

Eric: there must be someone in TO...

Ed_moderator: found about 20 of them on the American College of Rheumatology, Janice give me your email address and I ll forward to you.

Janice: What do people with PAN take for restless leg syndrome?Janice: They feel funny down the backs of them, and I have to either keep moving or go to bed.

Eric: I'm the wrong guy for that question... I don't treat patients.
Some of the people on the list have talked about restless leg syndrome, but I don't remember what they recommend.

Janice: Ed, did your mother ever mention this?

Ed_moderator: and very out of breath

Janice: I'm just weird I guess.

Ed_moderator:Can weg also affect kidneys?

Eric: Wegener's usually doesn't have skin probs... usually sinus, lung, kidney and gastrointestinal

Ed_moderator: What about PAN and gastro?

Eric: Kidney is a major target in WG

Janice: That explains their testing when they were searching for a diagnosis for me (sinus, lung x-rays)

Eric: PAN can affect GI tract, too. lots of overlap

Ed_moderator: What in the biopsy would indicate PAN rather than Weg?

Eric: I'm not sure there is a lot of difference between PAN and WG on kidney biopsy

Janice: Doesn't a P-ANCA and C-ANCA indicate PAN?

Eric: Janice, yes, but 10-15% of WG patients are ANCA negative

Janice: My P=ANCA was 16 (0-6 is normal) It's now 0 with meds.

Eric: Janice, depending on the test they ran, that may not be very high, but with your symptoms, I'd still consider it. Something to watch

Janice: I think the ANCA test was just to confirm my diagnosis...

Ed_moderator: Eric..did you read Birgit's report on preliminary findings from Survey

Janice: Yes, what did she discover?

Ed_moderator: Very interesting. Too much info to quote here, but interesting diff between German patients and English. Here's an interesting stat.... 82% of German respondents stated that ANCA was used as DX. Only 50% of U.S. had it used

Eric: I'm surprised it's even as high as 50% in the US... most docs have never heard of ANCA

Ed_moderator: Higher use in Europe?

Eric: not dumb, just not well informed. Yes, much higher in Europe and Australia. and very high usage in Japan

Ed_moderator: I'm surprised by that...I assumed most Rhuemys here did use itwhat do you make of that discrepency..why not here as muchEd_moderator:

Janice: Germany must be more medically advanced? More research? More dollars?

Eric: yes, most GPs don't get much training in autoimmune diseases. More specialists in Germany... the government pays for everything (except naturopaths or homeopaths)

Janice: And it's becoming more and more prevalent. Go figure!

Ed_moderator: And yet, I guess why would GPs be trained in rheumatology. I mean they are more on the front lines with general knowledge, right?

Eric: yes, the GP should be the screener, and should refer to the specialist... GP's order general lab tests, look at symptoms, and then refer. GP's have to recognize symptoms from neurological to rheumatic, to tumors, to psychiatric... sometimes not easy

Ed_moderator: Here's another interesting snippet. More German respondents report being hospitalized than U.S for their vasculitis. Again..govn't pays the bill, right?

Janice: Canadian govt does too, but they have a shortage of beds!

Eric: yes, the shift in the US is to outpatient care, because hospitals are SOOOO expensive. Yes, in Germany it's largely socialized... same in Canada

Ed_moderator: Eric..What do you make of that ruling in Mass requiring everyone to have health insurance or pay a fine?

Janice: Do they have to pay for health insurance??

Eric: I think the ruling was that all employers have to pay for the insurance... if they have a certain number of employees.

Ed_moderator: a good thing I suppose, but how many small businesses will suffer?Ed_moderator: They can't support all their workers

Eric: Ultimately, the law will increase unemployment, and will force employers to leave Mass and move to Conn or other states. A nice idea, but not very well thought out

Ed_moderator: I don't know the answer...I know that if I wasn't working my heart attack would have bankrupted me

Eric: Doing business in Canada is much more expensive than in the US. Janice, my understanding is that some surgeries or esoteric procedures might have a wait of a year or more.Eric:

Janice: Treatment here is six weeks to three months wait time

Ed: By the way, what are you doing over there in Calif, Eric?

Eric: Working on a new diagnostic system for labs... exciting stuff... will give us answers to ten or more tests on a single small blood sample, in about an hour from patent's vein to doctor's brain edible

Ed_moderator: pertaining to vasculitis other illnesses?

Eric: yes, this company is all autoimmune, so we're working on that first... I hope to have some data to present at the Vasc meeting in BaltimoreEric: This is all new technology... including running the test, not just sending the results to the doc. Eric: Ed, it's both... running the test, interpreting the result, sending the results, and telling the GP what they mean...

Ed_moderator: This may be a dumb question but that's okay...so today a blood test only reveals ?? This test would reveal the specific vasculitis?

Eric: Ed, we're not quite there, yet... but we can have an ANCA and an ANA at the same time

Ed_moderator: But what you are talking about Eric is a blood test revealing results, or is communicating those results? Or both?

Eric: Depends on the test... doc has to order ANA, ANCA, anti-DNA, CRP, Sed Rate, etc as separate tests. Each may take a few hours to a few days for completion...

Ed_moderator: Ahhh, I see. So this combines all into one test? Eric, is it okay to share this chat with this info with the group? I don't want to get you in trouble.

Eric: Yes, there is no problem there... the system will be unveiled at the Clinical Laboratory Expo (big international meeting) at the end of July in Chicago

Janice: Is this done in the lab, Eric?

Eric: Janice, yes, this is all done in the lab. Any laboratory in the world.

Ed_moderator: Can I ask. what role did you play in it? Testing..consulting?

Eric: Research, development, testing patients, getting FDA approval, writing the instructions for the lab scientists to run the test, and explaining to the software engineers what we needed for the machine

Janice: Who will have access to this system when it's unveiled?

Ed_moderator: You know one of the great advantages is cutting down the lag time.quicker dx for patient

Eric: it will also reduce expense for the lab, and it should bring patient costs down, too

Ed_moderator: Eric.how does such technology get distributed. I would assume first in the hands of the big guys like Johns Hopkins, Mayo, Boston U., Cleve. Clinic. Before reaching the smaller centers..

Eric: Ed, the big places will look at it first, but the whole system will be fairly inexpensive (as lab instruments go), so even small places can use it... they key is going to be how fast the companies get

********** at 9:21 PM Shelley joined the room

Ed_moderator: How are you doing Shelley.what's new

Shelley: hectic around here, doing wellShelley: My son s liver function was too high last 2 weeks is this test to take the place of reg. blood work?

Janice: Shelley do you have pan?

Shelley (guest): no, my son has it, now for 5 years

Janice: How old is he?

Shelley: 20 yrs. old

Janice: How's he coping?

Shelley: Well, he has been to there and back more times than I can count. His count is too high. They are checking it again this week

Janice: Has he kidney problems? Does he have pain?

Shelley: Yes for almost 3 years. His pain was in his abdomen, but has a neuro stimulator now and it has been wonderful for 3 years. His elbows and knees hurt, periodically

Janice: Is joint pain associated with PAN, or is it muscle weakness from PAN?

Shelley: Apparently it is, but we double up on pred. for a few days and it gets better

Ed_moderator: Shelley...is he on Pred?

Shelley: yes, and Methotrexate

(the last ten minutes of chat not captured)

Further Reading on these terms:

avascular necrosis (http://en.wikipedia.org/wiki/Avascular_necrosis)

American College of Rheumatology (http://www.rheumatology.org/)

restless leg syndrome (http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm)


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