Rituxan - didn't work well for MPA

[annekat]

As far as Weg's, It looks like cytoxan for 2 months and rituxan for maintenance maybe starting around the 4th month would work ideal.
Any other thoughts out there?
Of course, this is just theory.

I haven't taken the time yet to look at the links you posted, but your theory above sounds interesting to me. It would be a good thing to be on CTX for less time but give it a chance to zap the worst of the symptoms before switching to RTX. However, I'm feeling like it might be better to either stay on the CTX a little longer or start the RTX a little sooner and not have a gap with no treatment between the end of the 2nd month and the beginning of the 4th month, if that is what you meant. Or the CTX and the RTX could overlap for a time, unless someone knows of a reason they shouldn't. I just don't think most people go into remission after 2 months of CTX, though I'm also not sure if that's what you meant. These are just my gut feelings, and of course, everything would depend on how the patient was responding to the treatment. It appears there are many creative and innovative treatment schedules that can be followed with the WG meds, and I like seeing that, as long as the docs are experienced and know what they are doing. Would be interesting to know how a WG specialist would respond to your theory.

[mrtmeo]

I haven't taken the time yet to look at the links you posted, but your theory above sounds interesting to me. It would be a good thing to be on CTX for less time but give it a chance to zap the worst of the symptoms before switching to RTX. However, I'm feeling like it might be better to either stay on the CTX a little longer or start the RTX a little sooner and not have a gap with no treatment between the end of the 2nd month and the beginning of the 4th month, if that is what you meant. Or the CTX and the RTX could overlap for a time, unless someone knows of a reason they shouldn't. I just don't think most people go into remission after 2 months of CTX, though I'm also not sure if that's what you meant. These are just my gut feelings, and of course, everything would depend on how the patient was responding to the treatment. It appears there are many creative and innovative treatment schedules that can be followed with the WG meds, and I like seeing that, as long as the docs are experienced and know what they are doing. Would be interesting to know how a WG specialist would respond to your theory.

Hi Anne,
I should have mentioned that I meant a minimum of 2 months cytoxan.
Some folks with weg's don't seem to respond to cytoxan and lose their kidney function, so if they haven't had any response from cytoxan on their organ function after 2 - 3 months, they could move to rituxan.
It seems most people go into remission around the 2nd and 3rd month from treatment, but those that don't respond can have further organ damage and need an alternative.
I wish they would come up with a time frame that could tell them if it is time to try another drug to get the person in remission to minimize damage.

Maybe when the research is out with the plasma exchange, they could use that for people with lung kidney issues to stop the ANCA's while their drug is working?
Right now, they won't use plasma exchange unless the creatinine is >5.6 or the lungs are life threatening.
I think the trial is plexvas, but not sure.

[annekat]

I still think remission is a subjective and somewhat loosely used word. I was not in what would probably be called remission after 3 months of CTX, but I had shown great improvement, so obviously the drug was working. I was kept on it several months longer than that, but think I could have been switched to MTX sooner, as my lungs were doing well and I had no kidney involvement. I don't think I needed RTX. But for someone with more severe and harder to treat issues, I agree that starting with CTX and then switching to RTX could be a good route to take, even if they had shown some improvement with the CTX, the point being to limit the use of CTX in one's lifetime, with it's known dangers with long term use. The CTX would kick-start the process and then the RTX would take over. True, some may not respond to CTX at all, but I think they are rare, from my readings on here.

[mrtmeo]

Valid points.
I believe that if there are high inflammatory markers and pos anca, the disease is smoldering somewhere.
Of course, there are some that are not anca pos, but they would still have high inflammatory markers with active disease.

[annekat]

Valid points.
I believe that if there are high inflammatory markers and pos anca, the disease is smoldering somewhere.
Of course, there are some that are not anca pos, but they would still have high inflammatory markers with active disease.

Yep. I have no idea what my ANCA is, because it never seems to get tested and was barely positive at dx, although I was quite sick. But I know from my last blood work that my inflammatory markers are now normal! So I guess that means there is no active disease at present. Maybe someone would say I'm in remission, though no one has used that word, and it would definitely be a medicated remission. Maybe if I switched docs I would finally hear the R word!