2 vs. 4 RTX Infusions - Thoughts?

[Sangye]

Strange that Dr. Seo thinks that way Sangye. My doc says he has had many cases of Wegs that have smouldered over the years.

He agrees that Wegs can smolder (and agrees that I had smoldering Wegs for 2.5 yrs, even though some of that was under his care). He just doesn't think that I currently have smoldering Wegs.

[Sangye]

My doctors would agree with you as do my wife's oncologists. They tell me they do not want to use RTX for me unless it is life threatening flare because they think it becomes less effective each time you use it. I guess it is like antibiotics that your body or bugs build up a tolerance to it when it gets used a lot. But sometimes it seems there is no choice but to try use it as a maintenance drug since you don't seem able to get by without it. Another reason doctors like to avoid heavy drug treatment when possible is to reduce and avoid side effects since we often don't know what the ramifications of long term use of some of these drugs either.

Sorry to hear it feels like the Wegs is smoldering again. Generally our feelings tend to be more reliable indicators unfortunately and sometimes the labs lag behind.

Dr Seo said that rtx seems to work better/ longer the more times you get it, but he also has said that it may stop working if you get too much. Somewhere in the middle of that is me.

Rtx is my only option, so we use it as infrequently as possible.

[Sangye]

My experience is a lot like yours Sangye, both with the disease and the response of my doctors. I know we have talked about this before. I haven't had a direct conversation about smoldering disease with my doc but he treats me like I'm doing fine as long as I'm not physically sitting in his room.
I have had smoldering , and more than smoldering, disease for over 12 years now.
I will say that I am doing better than five years ago, or two years ago, but I'm a fair piece from healthy. I'm encouraged and for the length of time that I have been sick and the many serious events and hospitalizations I have had it is surprising that today my message is hope.
If I can go through all that, for that long, and be feeling like I'm gaining ground... well, its amazing. And I hope my good friends here can find recovery faster and more robustly- I've had that happen too.
Your Dr Seo sounds like a wonderful Dr and a good person. I have a favorite Dr who treated me initially over thirty years ago, but he is not perfect and has made mistakes and has his blind spots too. He might say the same about me.
I am optimistic that treatment and treatment options will continue to evolve for us especially as we stay involved and help the good Drs to ask good questions.
I get Rituxan a week from tomorrow and tracheal dilation shortly after that. For me class is still in session.
Oh, I wrote to someone doing a DNA study on WG hoping to get involved. If I hear back anything I'll write a report.

I'm really happy to see you in a good frame of mind. It's been rough for you. Nice that the sun came out.

Dr Seo is a great doctor. He works harder than any doctor I've ever seen and is sharp as a tack. Really the only place he and I tangle is over how accurate symptoms and intuition are.