"I Don't Know" - Notes from the VF Symposium

[JanW]

Had my regularly scheduled follow up visit today with my rheumy, who was very interested to hear what went on at the conference. We had an interesting dialogue, especially in regards to long-term immunosuppression. I can tell that he's not a total buyer of the 'remission is random' theory, and frankly he raises a good point about this all being a moving target because any population group of wegs patients is so vanishingly small. He did agree that the relapse rate, in his experience, is much higher than websites would have you believe (he thinks it's not a coin toss -- basically most of his patients relapse at least once).

[elephant]

Thanks for sharing JanW. Love to learn.

[Sangye]

Very interesting, JanW. I'm looking forward to my next conversation with Dr Seo. He's never mentioned the "remission is random" theory and I wonder what his thoughts are about it.

[JanW]

The big one pushing that was Dr. Paul Monach (Boston) who is more research oriented (although does see patients with Dr. Merkel). And the docs certainly weren't as insensitive as I am being by saying it's random (but I know you know that). He said something more like, "We don't have any really good evidence to support why most people relapse and some people don't." The German neph from UNC (whose name escapes me now), was the one that offered the line about being treated every day for a sinus infection you *might* get five years from now, which I thought was very apropos and really put things on a laymen's level. You can imagine, though, surely, how tough it's going to be for most rheumys to admit that maybe, just maybe, there isn't a whole lot you can do to prevent a flare -- that lack of control is very, very scary.

And, you have to remember, as I am sure you have heard, that if you put two rheumys in a room you'll end up with three opinions! I wouldn't be surprised at all if Seo had a completely different 'gestalt' as the docs like to say, about wg and remission.

[Sangye]

I do know that Dr Seo is very conservative about using any drugs. I was sure he was going to put me on Cellcept after the last round of rtx. I never would have imagined that he'd say I could go a year without being on anything before repeating the rtx.

[elephant]

Sangye I am so glad you don't have to go back to cellcept. So things have changed in their thinking ( remission without drugs). I wonder why I still have to be on 4 meds? That may change, hopefully soon.

[Sangye]

Well, I hope I can stay off Cellcept, but it's all trial and error.

[LisaMarie]

Jan
did they mention heart wall involvement? Just curious....i have some heart wall changes....it is concerning since it a thickening....will be doing echos every 3 -6 months

[JanW]

I don't recall anything about that specifically -- however, there were several concurrent sessions, and I only went to ENT (not lung, kidney, gastro, etc.). They didn't have a specific session on heart involvement, however, it could have been mentioned in the lung session.

Keep checking back on the VF site, things will be posted there.

[Sangye]

Lisa Marie, is your heart wall thickening due to working harder, as in ventricular hypertrophy?