New article on maintenance, scheduling, RTX etc post primary treatment

[Palmyra]

Hey guys and gals!

I was just scanning online and google alerts popped this up:

Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

I haven't had time to read/digest the entire article, but will later. Thought I would get it posted now for others to take a look at and ponder.

:smile1: Jane

[KathyB]

Great article, Jane! When I see my rheumy on Monday, I'm sure we will discuss. (I'm sending him the link, although I would imagine he receives the publication!) The big question for us is what to do next. I'm in the category the article cited of an Rtx user (two rounds of treatments) with prednisone at 5 mg/day as maintenance (no other meds). My rheumy is trying to determine what's next. Thanks for sharing!

KB

[Lightwarrior]

Hey guys and gals!

I was just scanning online and google alerts popped this up:

Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

I haven't had time to read/digest the entire article, but will later. Thought I would get it posted now for others to take a look at and ponder.

:smile1: Jane

I just read and emailed it to my rheumy. They just increased my pred to 60mg are asking for a chest xray and considering Rituxan

[Palmyra]

Big news for all those out there that are fumbling around for some kind of ground rules regarding maintenance. This is the most specific article that I have come across regarding maintenance, since Alison was first treated with RTX in late 2006.

I would love to more opinions from all of you. The author is someone I am sure I should have known something about previously, but did not until now.

Do any of you have any familiarity with this specialist, or the Center for vascultis in Boston? I have read/heard of Dr Peter Merkel for many years, but like seeing this gentleman's interest in bio-medicine, genetic markers and antibody testing to determine treatment needs. Better equiped testing would take much of the guess work out of treatment. It sounds rather sweet to me:

Paul A. Monach, MD, PhD » Vasculitis Center | Boston University (http://www.bu.edu/vasculitis/buvc-mission-statement/your-vasculitis-team/peter-merkel-md-mph/)

[drz]

Hey guys and gals!

I was just scanning online and google alerts popped this up:

Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

I haven't had time to read/digest the entire article, but will later. Thought I would get it posted now for others to take a look at and ponder.

:smile1: Jane

I think it is a great article and consistent with what my GPA doctors tell me. I am like Al in the category of having considerable kidney damage and thus at higher risk from a serious flare so the treatment has focus on trying to minimize risk of GPA flare and treating any symptoms aggressively when they do appear. My treatment has generally followed the recommendations of the article. The next question is what will they consider for indefinite treatment as a maintenance protocol. It is nice to know there are studies underway to help answer these questions. Thanks for finding this as it was very informative and helpful.

[Sangye]

Great article. I see he's using the 1,000 mg every 4 months for some patients like me. That's what we'll be doing instead of the once a year smackdown with 4 infusions.

[KathyB]

My rheumy and I discussed this article at my visit on Monday. He receives this publication and also shared he had discussed this one-time protocol (like you mentoned, too, Sangye) with a doctor from the UK he met up with last weekend. Sounded interesting and definitelly will be considered in my future. Thanks again for sharing, Palmyra!

KB