Lost all patience

[Wegetarian]

I don't remember exactly how much it was, might have been 1500mg per infusion. Does that sound right?

On the first time they put 2 litres of saline solution + .5l of something for nausea + .5l of CYC and after that an another 2l of saline solution. I think they started at 11am and I was finished around 8pm and felt like a balloon. Was so bloated the next day... On the following IV's they just put half the amount of saline solution. I also got something similar to that urometasomething which help to prevent bladder stuff.

[mrtmeo]

I don't remember exactly how much it was, might have been 1500mg per infusion. Does that sound right?

On the first time they put 2 litres of saline solution + .5l of something for nausea + .5l of CYC and after that an another 2l of saline solution. I think they started at 11am and I was finished around 8pm and felt like a balloon. Was so bloated the next day... On the following IV's they just put half the amount of saline solution. I also got something similar to that urometasomething which help to prevent bladder stuff.

I believe the bladder drug is called Mesna?

[Wegetarian]

The one they gave me had a much more complicated name, but its supposed to do the same thing

[mrtmeo]

The one they gave me had a much more complicated name, but its supposed to do the same thing

It is marketed by Baxter as Uromitexan and Mesnex?

[drz]

I was told the pill form of CTX is generally regarded as more effective and safer to use since they can easily adjust the dosage up or down each day according to your lab work and there is less chance of a severe reaction to it given the lower dosage since it is taken daily.

[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!

[mrtmeo]

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!

Hi Velma,
She cannot take mtx due to her kidney failure and she has MPA.

[annekat]

It is marketed by Baxter as Uromitexan and Mesnex?

If there is something to help protect the bladder during CTX use, I wonder why it was not made available to those of us taking oral CTX? I haven't heard it mentioned on here before. Is there a reason, such as delivery method or other, that it would only be useful for those getting infusions of CTX?