DATE: March 14, 2010 Participants: Ed: PRSN Moderator Dr. Eric Hoy: Immunologist Gail: PAN Group Member Ed Moderator: Welcome to the PAN Chat Dr. Are there any restrictions on accepting patients based on geography? We follow their disease over time and compare with other patients with the same disease.

Hope everyone is doing well tonight Ed Moderator: Hello! So yes, we are fortunate to have resources for patients with new or prior diagnoses of vasculitis. I mean it puts a patient into the specialists circle. Ed Moderator: I'm sure other doctors are thankful to have a place to refer any patients they get with vasculits. So patients with wegener's, churg strauss, giant cell arteritis, Takayasu's arteritis can enter study no matter what disease is doing-active or inactive.

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The council agreed to submit an application by March 30 for the projects to be part of the program letting the government pay the majority of costs for a construction project.

The projects would be part of the Alabama Transportation Rehabilitation and Improvement Program (ATRIP) which would provide federal funds for road projects to state municipalities and counties.

We are also opening treatment study for patients with large vessel vasculitis (Takayasu and giant cell) with treatment with abatacept, a new medication that has been studied in rheumatoid arthritis.

Later this year we'll be opening a study using plasma exchange in combination with usual treatment for patients with severe ANCA vasculitis (kidney or lung involvement). If you guys sound excited we should be excited..:-) Dr.

I'm also submitting a grant to the NIH to look at the immune system in patients with vasculitis. Kathy: We are planning to look at B and T cell profiles, and to me the most exciting part is looking at T cell stimulation assays and T cell multi-functionality. Eric: Ed, exciting now for us, and I hope some useful applications a few years down the road. Kathy: T cell stimulation is a way of measuring T cell activity. Eric: I'm doing some work with CD17 T Cells in lupus patients right now...

Ed Moderator: Can you elaborate a bit more on what a plasma exchange means? Kathy: Plasma exchange means removing some of the patient's blood products, sort of like hemodialysis, and putting in "clean" plasma which has shown to help patients in small studies, but has never been looked at in a large randomized, placebo controlled study. Or, I should say what is the desired goal of doing it? Eric: What is the advantage of exchange over plasmapheresis? Kathy: Well, the thought is that this removes some of the harmful proteins circulating in the blood, it is the same thing as plasmapheresis technically. I think this may be a way to monitor immunosuppressive therapy to try to avoid over- or under immunosuppression and minimize infection and cancer risk. Ed Moderator: What would it potentially mean for a patient? Counting T cells is ok, but doesn't mean a lot if they don't work.

Can sometimes recover from injury or suffer permanent damage. Eric: not necessarily a miracle, but a slow process. a member asks..the reduction of prednisone to see if symptoms disappear or get worse a reasonable treatment plan? Ed Moderator: This doesn't seem like an uncommon approach? Gail: I'm off all steroids and have been for a few years Neuropathy continued to get more painful and more nerves lost Ed Moderator: That's wonderful, Gail. Seen in a lot of women after antibiotics, steroids or thos with diabetes. Sometimes we have to try a few to find the right one but..

Steroids do cause side effects, so can create new problems but in general we try to get steroid doses down or off because of long term side effects once patients are in remission. Kathy: Like most medications, this is person-dependent. let me know when you're coming if you're interested. Ed Moderator: Congrats on the new center and I'm sure we can steer some patients your way Dr.

Kathy: I don't think there's an appropriate general answer for this. ic occurs in immunosuppressed patients Gail: I'm wondering what does she feel is the very best medication for neuropathy Dr.

Eric: We looked at infetious agents as triggers and didn't find any association of candida...

By Jeffrey Abbott City streets in Madison are now slated to be improved after the Madison City Council approved five proposed road projects this week.