What would you ask?

[Trudy]

I'm going to the Chicago Vasculitis Foundation 2012 Symposium. If you were going, what question would you ask ?

Here is the link for anyone interested: Knowledge. Community. Power. The 2012 Vasculitis Symposium - Chicago | Vasculitis Foundation (http://www.vasculitisfoundation.org/2012chicagosymposium)

[chrisTIn@]

Most questions I have are going to be answered, when I read the programme.
Sounds very interesting, especially 'State of the art for treatment of vasculitis'.

Would be wonderfull if you were able to write a report when you come back!
Thanks for posting Trudy! :thumbsup:

[pberggren1]

Are you married?

[KathyB]

I think many of us are wondering about treatment dosage for Rtx ... and the research to support.

KB

[Palmyra]

I am interested in state of the art for treatment of vasculitis...also:

B-cell Based Gene Therapy for Aut... [Infect Disord Drug Targets. 2012] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22394178) Genetic modification for treatment of AI disease. Could this be the route to an actual cure?

And Phil...who were you asking if they were married!:wink1:

[pberggren1]

No one in particular. A cute doctor maybe.

[JanW]

I would love if the question about life time maintenance drugs vs. attempts to go drug free were asked again. I think both Merkel and Seo agree on this one -- and I'm sure that the question will likely come up.

[Debbie C]

Trudy..I looked at the website you posted and saw who was speaking and it turns out that the rheumy I see at Cleveland Clinic will be there...Dr.Gary Hoffman..he was the one who first prescribed Imuran (100mg. daily) and never mentioned that tpmt blood test either.When I called him I couldn't take it he said it was probably my anxiety and try again. I didn't until this other dr. told me to take 50mg.and thats when I started having more problems. So u might want to ask him if he feels that blood test is necessary..just to see what he says just don't tell him about one of his patients I don't want him figuring out it was me because I'm gonna go try to see him after the conference..maybe he'll have some new ideas for me to try.

[freakyschizogirl]

I would like to know what the long term effects for RTX could be. Its a treatment still in its infancy with the long term effects still not really documented.

Why is there an American and British protocol? Is 4 infusion better than 2? And how long should the maintence doese be given for?

[Dryhill]

My question is the same as freakyschizogirl.

[Sangye]

Sam, the two different protocols are both used in the US.

[freakyschizogirl]

Ah....i thought i remembered reading on another thread someone saying there were different protocols for uk/us?

[marta]

I'm also curious about the thinking between lifetime maintenance drugs vs drug free remission.

Sam, I asked my doc about RTX and long term side effects. She told me that so far the only thing they've seen as a negative side effect of multiple uses is the suppression of immunoglobulin (Sp? throughout) production in some people. I can see all of us growing horns in 15 years from our RTX habbit - wouldn't that be cool? It wouldn't be an invisible disease any more.

[pberggren1]

I'm also curious about the thinking between lifetime maintenance drugs vs drug free remission.

Sam, I asked my doc about RTX and long term side effects. She told me that so far the only thing they've seen as a negative side effect of multiple uses is the suppression of immunoglobulin (Sp? throughout) production in some people. I can see all of us growing horns in 15 years from our RTX habbit - wouldn't that be cool? It wouldn't be an invisible disease any more.

I grow horns from time to time. It depends on how much pred I'm on........lol.

[freakyschizogirl]

Sam, I asked my doc about RTX and long term side effects. She told me that so far the only thing they've seen as a negative side effect of multiple uses is the suppression of immunoglobulin (Sp? throughout) production in some people. I can see all of us growing horns in 15 years from our RTX habbit - wouldn't that be cool? It wouldn't be an invisible disease any more.

I'd rather re-grow my own nose - now that WOULD be amazing! But horns, ok, could be worse!

[Sangye]

In the past when we've discussed the long-term safety of rtx, Dr Seo has said that we just don't know since rtx has only been used on Weggies for about 5 years. He said, "I can't promise you that you won't grow a third arm out of your forehead." LOL I think that's much more useful than horns.

[freakyschizogirl]

Yeah but then we'd be like elephants!

[Sangye]

Horns are nice to hold your keys and stuff, but an extra arm would be awesome. Of course it'd make our wee heads droop with the weight and all....

[Al]

I'm also curious about the thinking between lifetime maintenance drugs vs drug free remission.

Sam, I asked my doc about RTX and long term side effects. She told me that so far the only thing they've seen as a negative side effect of multiple uses is the suppression of immunoglobulin (Sp? throughout) production in some people. I can see all of us growing horns in 15 years from our RTX habbit - wouldn't that be cool? It wouldn't be an invisible disease any more.
Of course, RTX is supposed to suppress the immunoglobuln, aka antibodies. ANCA, too, are immunoglobulin, mostly of the IgG sort, but there are a few IgA and IgM ANCA as well. Unfortunately, t also suppresses more useful immunoglobulin, like antibodies again chicken pox, bird flu, and the common cold.

Horns might be kind of cool. And with the pred, I can already leap tall buildings with a single bound.

Al

[KathyB]

These postings have "grown" to be quite "humorous!" On that note, another arm would be useful!

KB