Rituxan - didn't work well for MPA

[annekat]

It would be nice to see a negative ANCA, for sure. My ANCA was barely positive at dx and I haven't had another test. Don't think I need one at this point, because I have almost no symptoms and a normal SED rate, and have always had normal creatinine. But if your mom has always had an elevated ANCA since first tested, I agree you'd want a update to see if there's any improvement. I wonder if some CTX would help the kidneys more than the RTX has. I hope your rheumy is open to that idea. If not, I hope that another round of RTX will make a difference. Lots of wondering and hoping going on.... best wishes to you and her. I know this has been a very hard road for you both to travel on.

[mrtmeo]

It would be nice to see a negative ANCA, for sure. My ANCA was barely positive at dx and I haven't had another test. Don't think I need one at this point, because I have almost no symptoms and a normal SED rate, and have always had normal creatinine. But if your mom has always had an elevated ANCA since first tested, I agree you'd want a update to see if there's any improvement. I wonder if some CTX would help the kidneys more than the RTX has. I hope your rheumy is open to that idea. If not, I hope that another round of RTX will make a difference. Lots of wondering and hoping going on.... best wishes to you and her. I know this has been a very hard road for you both to travel on.

I don't know if being 7 months from first infusion if she could still get improvement with another treatment.
Do you haven any fatigue?

[annekat]

I don't know if being 7 months from first infusion if she could still get improvement with another treatment.
Do you haven any fatigue?

I don't know either. People with RTX experience could possibly answer that.

Yes, I still get fatigued a little easier than I did pre-Wegs. But it is vastly improved. It's partly due to permanent lung damage, which in my case is relatively minor I think, but is still there, so I get out of breath a little sooner. I also get the mental fatigue, which could be partly due to the meds, or maybe some of my brain cells have been destroyed, although if so, not to a great degree. The fatigue seems to be ongoing for most Weggies, even those in remission. But I'm doing well. I just took a mile long walk for the third day in a row, and although I know that is not a great distance, I have noticed more stamina each day, for sure. So some of the fatigue on the first day was just being out of shape. I'll be increasing the length of the walk soon.

[mrtmeo]

I don't know either. People with RTX experience could possibly answer that.

Yes, I still get fatigued a little easier than I did pre-Wegs. But it is vastly improved. It's partly due to permanent lung damage, which in my case is relatively minor I think, but is still there, so I get out of breath a little sooner. I also get the mental fatigue, which could be partly due to the meds, or maybe some of my brain cells have been destroyed, although if so, not to a great degree. The fatigue seems to be ongoing for most Weggies, even those in remission. But I'm doing well. I just took a mile long walk for the third day in a row, and although I know that is not a great distance, I have noticed more stamina each day, for sure. So some of the fatigue on the first day was just being out of shape. I'll be increasing the length of the walk soon.

It kinda sound like your fatigue is really just endurance.
The pred has really done this to my mom.
However, when she had leukopenia for a couple days, she energy to do stuff, but that all changed when her neutrophils went sky high again.
Her neutrophils are always above normal even when the rtx kept the lymphocytes below .2.
I really think the vasculitis causes damage to ATP which is our energy source and remember reading about it somewhere.
I just can't remember where I read it.

I am glad that the more you walk, the better you feel.
That is encouraging.

[annekat]

There are different kinds of fatigue. With the walking, I think I'm just like anyone else at this point and if I don't do it for awhile, it will take at least a few days to build up the endurance, so I agree with you there. The other kinds of fatigue for me that may be more WG related are like having to engage in an activity with people for a few hours and needing to get home and rest. That is more like a mental fatigue combined with whatever physical activity, or having a commitment to be somewhere and "on" for a period of time, is involved. I have always tended to need down time, and with WG, I think this becomes more so.

[mrtmeo]

There are different kinds of fatigue. With the walking, I think I'm just like anyone else at this point and if I don't do it for awhile, it will take at least a few days to build up the endurance, so I agree with you there. The other kinds of fatigue for me that may be more WG related are like having to engage in an activity with people for a few hours and needing to get home and rest. That is more like a mental fatigue combined with whatever physical activity, or having a commitment to be somewhere and "on" for a period of time, is involved. I have always tended to need down time, and with WG, I think this becomes more so.

Would you say that the fatigue you get when being out with people is all mental fatigue or is there some physical fatigue with it?

[annekat]

Would you say that the fatigue you get when being out with people is all mental fatigue or is there some physical fatigue with it?

It is probably some of both. It can be physically as well as mentally demanding to be in a social situation where you are committed and can't leave. You may have to be on your feet for a long time or sit in uncomfortable positions, or you may be working together with others to move things around or accomplish some other physical task. When I'm working by myself at home, I can rest or take a break whenever I want, and that is not always true in social situations. Sometimes just shopping in a grocery store or doing a string of errands can wear me out, and I'll cut my list short so I can go home.

[mrtmeo]

It is probably some of both. It can be physically as well as mentally demanding to be in a social situation where you are committed and can't leave. You may have to be on your feet for a long time or sit in uncomfortable positions, or you may be working together with others to move things around or accomplish some other physical task. When I'm working by myself at home, I can rest or take a break whenever I want, and that is not always true in social situations. Sometimes just shopping in a grocery store or doing a string of errands can wear me out, and I'll cut my list short so I can go home.

oh, that really sucks.
I am so sorry that most vasculitis folks suffer that kind of fatigue all the time.
It tells me there is still some kind of smoldering disease process going on killing your energy.
I sure hope they come up with a drug that can stop the smoldering.
Have u ever heard from long term weg folks if they get their energy back after many years?

[annekat]

oh, that really sucks.
I am so sorry that most vasculitis folks suffer that kind of fatigue all the time.
It tells me there is still some kind of smoldering disease process going on killing your energy.
I sure hope they come up with a drug that can stop the smoldering.
Have u ever heard from long term weg folks if they get their energy back after many years?

Actually, my fatigue level has gotten a lot better over the last year or so. What I was describing was more typical of an earlier time period. But I still have to be careful, it can take me by surprise. I don't think there is anything much smoldering in me right now, as my inflammation level is completely normal according to my last blood work, and my symptoms have settled way down. I'm still on meds. I could have another flare this winter but so far don't feel that way. I think many Weggies still report some issues with fatigue indefinitely, but there are other factors such as age, as well. We have some people on the forum who seem to manage whatever fatigue they have pretty well; Pete in Ohio, Don in Arizona, and Marta in Alberta, Canada, are three who come to mind and I'm sure I can think of others. I don't know that they have no fatigue, but they seem to lead pretty active lives including physical activities that they enjoy.

[mrtmeo]

Renal Outcomes of Cytoxan:

Looking at this study shows a more realistic result of renal improvements with cytoxan treatments.
Clinical features and outcomes of ANCA-associated renal vasculitis Seck SM, Dussol B, Brunet P, Burtey S - Saudi J Kidney Dis Transpl

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.

So far, with MPA, it looks like 2-3 months of cytoxan followed by Imuran for maintenance works very well.

Rituxan didn't improve my mom's kidney function with MPA.
She had 1 week iv dose of cytoxan along with high dose salumedrol and her creatinine went from 3.3 to 1.9 in two weeks.
I sure wish I would have stuck with the cytoxan.

This kid with MPA had a creatinine of 9 at his worst and 4.5 years later, his creatinine is 1.2 using cytoxan and imuran.
https://www.youtube.com/watch?v=zkxk...B2048&index=12