Lost all patience

[mrtmeo]

I finally, lost my patience with this non response of MPA by the drugs my mom has taken.
She had the best response with an IV Cytoxan one week dose on her kidney function in June 12, 2014.
Her Creatinine went from 3.3 to 1.9 by the end of the 2nd week.
Then, she went on Rituxan (June 24, 2014) and the best her creatinine went to is 1.8.
She has been on mofetil at a dose of 750mg-1gm which is the suggested range and she doesn't tolerate the 1gm dose daily and she still has high inflammaiton factors and pos ANCA.

Sed rate 35 (normal range 0-20)
C-rp <.5 (normal range 0-.8)
RF 28 (normal range 1-10)
Creatinine 1.8 (normal range .6-1.3)

By now, her creatinine should be showing some improvement.
I found out that in Israel, they don't use Rituxan for MPA because it doesn't work for MPA.
Both my mom's Nephrologist and Rheumatologist was surprised that my mom had little improvement with Rituxan.
I have, yet to find anyone that has MPA and renal failure have success with Rituxan.

She has lung involvement and unconfirmed GI involvement, so I think the cytoxan could put this disease in remission and Mofetil could maintain after. I don't know why Cytoxan was not tried much earlier, but she is almost 8 months from her first treatment with little response on a life threatening organ.

[renidrag]

Cytoxin is very toxic for long term use, comes with the threat of bladder cancer. The old risk reward thing. Most of us that have taken CTX drank a ton of water to move things along, especially to go at night and not let the drug rest in us. I took mine in the AM and still drank water up to bedtime to ensure movement. It is not recommended for use longer than six months though some here have been on longer. I was on for 10 months. I would definitely ask the Docs about it, maybe they thought they hit it hard enough the first time with the IV. Hope things get better for you and your Mother.
Dale

[mrtmeo]

Cytoxin is very toxic for long term use, comes with the threat of bladder cancer. The old risk reward thing. Most of us that have taken CTX drank a ton of water to move things along, especially to go at night and not let the drug rest in us. I took mine in the AM and still drank water up to bedtime to ensure movement. It is not recommended for use longer than six months though some here have been on longer. I was on for 10 months. I would definitely ask the Docs about it, maybe they thought they hit it hard enough the first time with the IV. Hope things get better for you and your Mother.
Dale

Hi Dale,
My mom had only a small dose of Cytoxan 750mg to last a week and then, she had to wait another week to take the rituxan.
I would think it would only take a month or two on low dose oral cytoxan to get into remission.

[Pete]

I was on cytoxan (100-150 mg/day) for 16 months. I echo Dale's thoughts on hydration. Before I got sick, I had never had a UTI. Had an episode of visible hematuria. Bumped bactrim up to daily dose from 3x/week. Cystoscopy a few weeks later showed no anomalies, and the infection cleared ok. Changed from cytoxan to methotrexate a few months later. Been on mtx and bactrim 3x/week for 2.5 years with no major problems.

[mrtmeo]

I like the idea of lots of water starting in the AM until bedtime to flush the cytoxan out.
I will definitely use cranberry extract too to help the bladder, but I wouldn't want her on it more than 2-3 months max.

[Pete]

I like the idea of lots of water starting in the AM until bedtime to flush the cytoxan out.
I will definitely use cranberry extract too to help the bladder, but I wouldn't want her on it more than 2-3 months max.

I don't like just plain water, so I always put about an ounce of cranberry juice in my water. I buy a store brand (Giant Eagle) that has no added sugar. Been doing this since we moved to Columbus 4+ years ago...

[annekat]

I was on oral CTX, 100mg/day, longer than I should have been, I guess about a year. It helped me a lot, though, and I think I could have switched at around 6 months if not sooner. Only time would tell how your mom would respond to a steady dose of it over 2-3 months or more. I can understand why you want to try it, and wonder what your new rheumy would say about it. I remember her nephrologist thought her body was too fragile for it. But I wonder if all docs, including the rheumy, would agree with that.

[Marty B]

My nephrologist did plasmapheresis first with Cytoxan pill form, for my Kidney's for a month the Cytoxan a couple months.. I kept getting sick And my white blood count went to 0 so they had to take me off of it give me shots to build me back up..and my red blood too..then my Rheumy stepped in got me Retuxan and I was in remission for 4 years.. My kidney's are still fine. It hit my lungs this time! I kept getting breathing attacks thinking I had a heart attack or pleurisy I had water around my heart and nodules in my lungs.. One CT in July showed some, then another in November showed tons more.. By December I thought I was dying, and my Pulmonary doctor was old, so they sent me to a new one which to one look at my CT's and said, it was a Flare.. But all my numbers came back off the chart too..
My kidney's will never be better than 30% because I almost lost both..they were at 9% when we caught it.. My creatin will never get any better than 1.6 and I am happy with that!! I will start to worry when I see 2.00 then I know it's attacking my kidney's again..

[mrtmeo]

My nephrologist did plasmapheresis first with Cytoxan pill form, for my Kidney's for a month the Cytoxan a couple months.. I kept getting sick And my white blood count went to 0 so they had to take me off of it give me shots to build me back up..and my red blood too..then my Rheumy stepped in got me Retuxan and I was in remission for 4 years.. My kidney's are still fine. It hit my lungs this time! I kept getting breathing attacks thinking I had a heart attack or pleurisy I had water around my heart and nodules in my lungs.. One CT in July showed some, then another in November showed tons more.. By December I thought I was dying, and my Pulmonary doctor was old, so they sent me to a new one which to one look at my CT's and said, it was a Flare.. But all my numbers came back off the chart too..
My kidney's will never be better than 30% because I almost lost both..they were at 9% when we caught it.. My creatin will never get any better than 1.6 and I am happy with that!! I will start to worry when I see 2.00 then I know it's attacking my kidney's again..

Hi Marty,
I firmly believe that rituxan works great for most weg's folks, especially, those who are non responsive to ctx.
However, I don't believe rtx should be used for MPA.
Israel doesn't use rtx for MPA because it doesn't work for MPA.
I wish I would have known this in the beginning.
My mom had almost zero improvement of her kidney function on the rtx.

[Velma]

Most of us have started out on Cytoxan it seems.. as did I as well. I was switched to Methotrexate and have done wonderful for the past 18 of 20 years on it--at different levels of course. Please check on the possibilities of this because it seems she is flaring and it has a pretty fast effect on the disease with little side effects and complications. Good luck!