Cytoxan 7 months out

[mrtmeo]

I am wondering if anyone knows if at 7 months out from first infusion if it is too late to receive improvement of kidney function using low dose cytoxan?

It has been 7 months since rituximab and my mom is not in remission, yet.

[MikeG-2012]

I'm over 18 months since my last flare up. Had four Rituxan infusions in November 2013, two in April 2014, and two more in November 2014, and I am not in remission yet either. I don't have kidney issues though.

At the beginning in 2012, I did do 6 months of Cytoxin. Then did 16 months of Mychophenolate, and that failed. So onto RTX it was for this round of treatment.

Every one of us takes a different time to get to remission, and unfortunately, there may be some that never really get there...

[mrtmeo]

I'm over 18 months since my last flare up. Had four infusions in November 2013, two in April 2014, and two more in November 2014, and I am not in remisssion yet either. I don't have kidney issues though.

Every one of us takes a different time to get to remisssion, and unfortunately, there may be some that never really get there...

Are you referring to rituxan infusions?
If so, have you tried cytoxan?

[annekat]

I am wondering if anyone knows if at 7 months out from first infusion if it is too late to receive improvement of kidney function using low dose cytoxan?

It has been 7 months since rituximab and my mom is not in remission, yet. I wouldn't think the time period from first infusion would be an issue. Cytoxan is cytoxan and it could help, regardless of when or if RTX was previously given. That's my unprofessional guess, anyway.

[me2]

My current understanding is that Rituxan is repeated at 6 months if there is not remission. I don't know how you have ended up at 7 without getting another Rituxan infusion if there is no remission.
This is how my doc has been managing my situation. I am kind of maxed out on Cytoxan so there wouldn't be talk of me going back to it.
It took a long time for Rituxan to work for me. I've lost count of the months and the number of infusions. My kidney function has not been an issue.

I think its a good question to ask the Rhuemy. Can you email or phone and leave your question?

[mrtmeo]

My current understanding is that Rituxan is repeated at 6 months if there is not remission. I don't know how you have ended up at 7 without getting another Rituxan infusion if there is no remission.
This is how my doc has been managing my situation. I am kind of maxed out on Cytoxan so there wouldn't be talk of me going back to it.
It took a long time for Rituxan to work for me. I've lost count of the months and the number of infusions. My kidney function has not been an issue.

I think its a good question to ask the Rhuemy. Can you email or phone and leave your question?

My mom's kidney function has not gotten worse since being on the mofetil, but her nephrologist would't give her cytoxan saying it was too much for her weak body.
I don't agree with that because she didn't have a problem with the one week cytoxan she got.
Since the rtx really didn't help the kidney function at all and I have not found a single person with MPA that used rtx, I would like to try ctx.
It was ctx that improved her kidney function very quickly and it is the one that all of the MPA people I heard say they improved their kidney function the most.

My mom has too many problems with mofetil at the highest dose her nephrologist allows and she cannot tolerate imuran, so iv ctx seemed like the best alternative.

[annekat]

Blake, are you in touch with a lot of MPA people? I was thinking maybe you were here because there wasn't a good forum for MPA. I know there are some Facebook groups with members who have MPA. I hear it mentioned a lot less than WG which makes me think it is more rare. I realize the two diseases are similar in many ways and don't really understand why the same meds would not work equally well for both. But then, there is a lot that I don't understand.

[mrtmeo]

Blake, are you in touch with a lot of MPA people? I was thinking maybe you were here because there wasn't a good forum for MPA. I know there are some Facebook groups with members who have MPA. I hear it mentioned a lot less than WG which makes me think it is more rare. I realize the two diseases are similar in many ways and don't really understand why the same meds would not work equally well for both. But then, there is a lot that I don't understand.

I don't use fb because there is no back n forth forum where you can search for posts and ask questions.
I have not found any other means of correspondence with MPA folks except with others I come in contact with from others via email.

The people I have met and corresponded to or heard/read their story on the net are those experiences I am referring to.
As far as the studies, MPA patients are not isolated to show how they respond to rituxan.
There is a study showing mofetil used for mpa only that was effective.
Alysia mentioned that in Israel, they don't use rituxan for mpa, just for weg's and lymphoma.

[annekat]

Alysia mentioned that in Israel, they don't use rituxan for mpa, just for weg's and lymphoma. That is interesting. As an aside, I knew someone who had RTX for lymphoma, but unfortunately it didn't work, maybe they waited too long to use it, I don't know a lot about the case. Anyway, she didn't make it.

[mrtmeo]

That is interesting. As an aside, I knew someone who had RTX for lymphoma, but unfortunately it didn't work, maybe they waited too long to use it, I don't know a lot about the case. Anyway, she didn't make it.

I wonder if the rtx worked too slowly?
I have read that R-Chop is successful for lymphoma that rituxan and cyclophosphamide.
Did she have any ctx?

[annekat]

I wonder if the rtx worked too slowly?
I have read that R-Chop is successful for lymphoma that rituxan and cyclophosphamide.
Did she have any ctx? She was the wife of a neighbor and I don't know what all treatments she had. I only know that she went to a a major cancer center in Seattle, received the standard treatments, whatever they are, and I think was doing a lot better for awhile and maybe even went into remission. But then it came back and that is probably when they tried the RTX. The neighbor mentioned a newer, very expensive treatment and I assumed it was RTX, and when I asked him, I'm pretty sure he said it sounded right. This was maybe 3 years ago and she died two years ago this month. That's about all I know and don't know the timeframes of her treatments. I don't feel comfortable asking him too many questions. He's taking it well, but it is a huge loss for him, and I don't bring up the subject much.

[drz]

I know at Mayo getting RTX alone for lymphoma cancer was an option. They also offered an enhance form of RTX called Zevalin which added mouse cells loaded with radioactive elements to kill off all the cells the RTX attacked. It was also very effective and even more expensive.


She was the wife of a neighbor and I don't know what all treatments she had. I only know that she went to a a major cancer center in Seattle, received the standard treatments, whatever they are, and I think was doing a lot better for awhile and maybe even went into remission. But then it came back and that is probably when they tried the RTX. The neighbor mentioned a newer, very expensive treatment and I assumed it was RTX, and when I asked him, I'm pretty sure he said it sounded right. This was maybe 3 years ago and she died two years ago this month. That's about all I know and don't know the timeframes of her treatments. I don't feel comfortable asking him too many questions. He's taking it well, but it is a huge loss for him, and I don't bring up the subject much.