What do you mean by long term? I didn't vote, because I wouldn't say that we have gone long term yet. My daughter(16) has had 2 rounds, 6 months apart and the plan is for 1 or 2 more years of every 6 months (2 infusions 2 weeks apart). The doctor hasn't used the term remission, but has said that there is no sign of active disease. All labs are normal (except some indicative of the initial kidney damage). Her B cells have been at zero since after the first round.
Thank you Gab & Andrew for making the site more friendly. We do need more friends voting. Anyone who can, please vote. (It looks to me easier then to vote in the US... oops I hope its not talking politics... )
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Very good question @mater. I should have think about it in advance... sorry I didnt.
I think that we can count long term after 3 treatments ? Starting from the third ? What do you think, my friends ? I though that the second sometimes just "push" the first.. please write what you think and I will then edit the first post accordingly.
Thank you for being here ♡
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Its a day to vote, isnt it ?
Anyone around who can, and didnt vote yet, please do.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Refreshing the thread... anyone who can vote and didnt vote yet, please do. Thanks ♡
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Just saw this today.
2 Treatments, the last 2 years ago.
It works, in remission since the last treatment, currently no other drugs not even pred!
Hope everyone who celebrates it had a Happy Thanksgiving!
Thank you, A, for making this poll. Another question about Rtx is if the treatment of it suppresses more than necessary, when done every six months. And truly, I am a huge fan of Rituxan, it's just the protocols are so varied. Our daughter's last dose (a year ago) was only one infusion, not a set of two or four. It has worked very well, however!
Thank you all for voting.
So far, all the way, it keeps same rating of about 40% saying that rtx keeps its efficiency and 60% not sure.
Please continue to vote. Also no members can vote.
Wtw, Thanks for your comment about too much immune suppresed. Something to think about and maybe an issue for a whole thread....
Thanks JeanMarie. I missed you around.
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
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