Anyone on cellcept with an infection?

[mrtmeo]

r

No. Following the IV cyclophosphamide my kidney function was around 40GFR. This improved over the next year or so to around 58GFR. I started the Cellcept about 2 months after finishing with the cyclophosphamide.

How long has she been on the Cellcept? It does take a few weeks to kick in.

Rose

My mom has only been on the Cellcept for a little more than a week.
Her WBC count went up really high just after starting imuran and cellcept.

[mrtmeo]

Yes, Kidney involvement was diagnosed by rapidly deteriorating function and kidney biopsy. I commenced cyclophosphamide IV x 6 months. Also had Solumedrol x 3 days before the cyclophosphamide. At the end of the 6 months my function was around 40GFR. It gradually improved over the next year and has remained fairly stable at around 58 GFR for the past 5 years. I have been on Mofetil for 6 years so yes, it has kept me in remission. I commented on your other post. I really dont understand why they have not tried this protocol with your mum especially since she has not responded to the Rituximab. I was told about how toxic cyclophosphamide was but it was explained to me that to save my kidneys they had no option. I dont think Cellcept will get her into remission with kidney involvement. It can maintain remission but you need the big guns to get her there.

Rose

Hi Rose,
Just talked with my mom's nephrologist and he says the reason he didn't want her on the ctx was due to her being so frail and her lung function.
However, she did really well on the one week pulse dose he gave her.
Right after she finished the rtx, he said he expected her creatinine to improve to around 1.2, but she never got lower than 1.8.
Now, she is at 2.2 and he says that she will have to be on Epogen for the rest of her life.
He said that in his experience he has never seen anyone improve the anemia caused by the kidney damage that is in 3rd stage renal failure.
It would only improve if her kidney function improved to 2nd stage and he hasn't seen anyone this far out improve that much.
She is only at the 4th month from her first rtx infusion and the literature shows improvements in kidney function going on well into a year.

[drz]

Hi Rose,
Just talked with my mom's nephrologist and he says the reason he didn't want her on the ctx was due to her being so frail and her lung function.
However, she did really well on the one week pulse dose he gave her.
Right after she finished the rtx, he said he expected her creatinine to improve to around 1.2, but she never got lower than 1.8.
Now, she is at 2.2 and he says that she will have to be on Epogen for the rest of her life.
He said that in his experience he has never seen anyone improve the anemia caused by the kidney damage that is in 3rd stage renal failure.
It would only improve if her kidney function improved to 2nd stage and he hasn't seen anyone this far out improve that much.
She is only at the 4th month from her first rtx infusion and the literature shows improvements in kidney function going on well into a year.

I went from stage three to stage two over many months and my anemia resolved after a couple years too.

[Rose]

I remember on diagnosis when my kidney function was around 40 my haemaglobin was very low and the doctor telling me I was borderline needing a blood transfusion. However like Drs it did improve as my kidney function improved. It has been in the normal range for past 5 years albeit low normal.

My kidney function was knocking on the door of stage 4 on diagnosis and is now knocking on the door of stage 2. In late 2011 I had another 24 urine test for protein which apparently is a more accurate test for kidney function and it showed I was in stage 2.

I hope your mother' s condition starts to improve soon. I was researching on how long it takes cellcept to work. I think if you are in remission, cellcept will maintain that remission if it is working for you. It is going to take about 3 months for full effectiveness if not in remission but you should be seeing some imrovement in 3 to 4 weeks.

Rose

[mrtmeo]

I went from stage three to stage two over many months and my anemia resolved after a couple years too.

Hi Drz,
My mom's creatinine at its worst when she first went to the hospital, was 3.3 GFR 14.
After 2 different blood transfusions and one IV dose 700mg Ctx, her creatinine was 1.9 GFR 26.
During the Rtx treatments it went up and down and after the treatments it went to 1.8 GFR 27.

She must have an internal bleed somewhere, but the EGD and Colonoscopy doesn't go into the intestines, so I suspect she has a vasculitis caused bleed in the intestines.
She needs an Epogen shot every 2 weeks to keep her level in in the double digits, but Mediscare just changed the criteria for shots.
It used to be if u were <12, u got a shot but now, u have to be <11.
I can't figure out any combination that would keep her hemoglobin in the double digits the longest.
If she wants a blood transfusion, she has to wait for her hemoglobin to go down to 7.
There is no quality of life with these policies.

I can force the erythropoeitin by feeding my mom 75gms of protein per day, but this raises her BUN too high.
The only thing I can think of do now, is find the internal bleed and patch it, otherwise, waiting until the mofetil starts working and stops the bleed, but she could waste away by then.

[mrtmeo]

I remember on diagnosis when my kidney function was around 40 my haemaglobin was very low and the doctor telling me I was borderline needing a blood transfusion. However like Drs it did improve as my kidney function improved. It has been in the normal range for past 5 years albeit low normal.

My kidney function was knocking on the door of stage 4 on diagnosis and is now knocking on the door of stage 2. In late 2011 I had another 24 urine test for protein which apparently is a more accurate test for kidney function and it showed I was in stage 2.

I hope your mother' s condition starts to improve soon. I was researching on how long it takes cellcept to work. I think if you are in remission, cellcept will maintain that remission if it is working for you. It is going to take about 3 months for full effectiveness if not in remission but you should be seeing some imrovement in 3 to 4 weeks.

Rose

Thanks for the timeframes Rose!

[mrtmeo]

My mom threw up all her dinner at 7pm, but she hadn't had the mofetil since 10am.
Her dr wanted to up her dose from 750mg to 1,000mg per day and I started it yesterday.
I sure hope this doesn't keep happening because there isn't an alternative left.
I know it was working with the 750mg dose because the blood in the urine stopped.
I am going back down to the 750mg dose and see if she stays ok.

[drz]

Hi Drz,
My mom's creatinine at its worst when she first went to the hospital, was 3.3 GFR 14.
After 2 different blood transfusions and one IV dose 700mg Ctx, her creatinine was 1.9 GFR 26.
During the Rtx treatments it went up and down and after the treatments it went to 1.8 GFR 27.

She must have an internal bleed somewhere, but the EGD and Colonoscopy doesn't go into the intestines, so I suspect she has a vasculitis caused bleed in the intestines.
She needs an Epogen shot every 2 weeks to keep her level in in the double digits, but Mediscare just changed the criteria for shots.
It used to be if u were <12, u got a shot but now, u have to be <11.
I can't figure out any combination that would keep her hemoglobin in the double digits the longest.
If she wants a blood transfusion, she has to wait for her hemoglobin to go down to 7.
There is no quality of life with these policies.

I can force the erythropoeitin by feeding my mom 75gms of protein per day, but this raises her BUN too high.
The only thing I can think of do now, is find the internal bleed and patch it, otherwise, waiting until the mofetil starts working and stops the bleed, but she could waste away by then.

These cut backs in services are sad and disgusting. As you point out there is no quality of life when you are seriously anemic. I used to get transfusions regularly when i went under 10 and didn't feel able to function at those levels. That was also my cut off for getting epogen shots but it turned out I never needed them after it was prescribed in lieu of future blood transfusions. One down side is some problems can arise from too many transfusions too I guess. My bleeding was in lungs and kidneys and anemia from an inability to make RBC. Have they tested for presence of blood in stools to see if there is signs of an internal bleed.

[mrtmeo]

These cut backs in services are sad and disgusting. As you point out there is no quality of life when you are seriously anemic. I used to get transfusions regularly when i went under 10 and didn't feel able to function at those levels. That was also my cut off for getting epogen shots but it turned out I never needed them after it was prescribed in lieu of future blood transfusions. One down side is some problems can arise from too many transfusions too I guess. My bleeding was in lungs and kidneys and anemia from an inability to make RBC. Have they tested for presence of blood in stools to see if there is signs of an internal bleed.

Hi Drz,
No one seems to know where or if she has an internal bleed, but her nephrologist mentioned there maybe an upper GI bleed.
She could have bleeding from the lungs.
Her abdomen has been distended since treatments and her bilirubin is fine.
I am not sure if it is the kidneys or adrenal glands that sends erythropoeitin hormone to the bone marrow to create blood, but there is another feedback loop incase that route doesn't work.
This is high protein diet, but this raises BUN too high with my mom.
I am looking at BCAA's (Branch Chained Amino Acids) which are a product from proteins that will raise albumin and hemoglobin without raising BUN, I think.

Her dr said that if u have an internal bleed, your body reabsorbing it doesn't provide the same nutrition as one would think.
You would think you would be getting some nutrition from the blood.
My mom did have a small stomach ulcer, barrett's esophagus and some surface blood vessels in the colon that were cauterized when she went in with renal failure.

I believe that her lung nodules are actually blood clots and if those were flaring, it could cause an internal bleed.
However, she has never coughed up blood.
Also, she has had this internal bleed before getting treatments.

The Epogen (procrit) takes 2 weeks to start working and only lasts a week.
If her dr could just order the shots every 2 weeks, she would be good, but they won't do that.

[mrtmeo]

I remember on diagnosis when my kidney function was around 40 my haemaglobin was very low and the doctor telling me I was borderline needing a blood transfusion. However like Drs it did improve as my kidney function improved. It has been in the normal range for past 5 years albeit low normal.

My kidney function was knocking on the door of stage 4 on diagnosis and is now knocking on the door of stage 2. In late 2011 I had another 24 urine test for protein which apparently is a more accurate test for kidney function and it showed I was in stage 2.

I hope your mother' s condition starts to improve soon. I was researching on how long it takes cellcept to work. I think if you are in remission, cellcept will maintain that remission if it is working for you. It is going to take about 3 months for full effectiveness if not in remission but you should be seeing some imrovement in 3 to 4 weeks.

Rose

Hi Rose,
I think the mofetil is working because I am not finding any blood in her urine.
Did you have a problem with constipation taking cellcept?