Anyone on cellcept with an infection?

[mrtmeo]

My mom seems to have an infection and is on cellcept.
She has a high WBC count and didn't have this before the cellcept.
Was wondering if anyone has had an infection while on cellcept and what they did to resolve the infection.

[mrtmeo]

This is very strange.
My mom was coughing up gold colored mucus when her WBC count was normal, but after starting the mofetil, her WBC went high.
She also, has a slight temperature in the mornings when she takes the mofetil but it goes away in the evening.

[chris.wg]

I am not on cellcept. But if I had to take a educated guess. The infection isn't so much a drug reaction. As a consequence of being on a immunosuppressant drug. The compromised immune system we tend to suffer often makes us more susceptible to infections and illness. All though I am confused by it going away in the evenings so it may be something completely different.

[mrtmeo]

I am not on cellcept. But if I had to take a educated guess. The infection isn't so much a drug reaction. As a consequence of being on a immunosuppressant drug. The compromised immune system we tend to suffer often makes us more susceptible to infections and illness. All though I am confused by it going away in the evenings so it may be something completely different.

It's got me baffled as well.
Hope the mofetil stops the vasculitis attacks and maybe her bad symptoms, including the cough, will go away.

[Rose]

Cellcept usually takes a few weeks before being effective. Does she have any other signs of infection? I remember a few months before my diagnosis and treatment, daily spikes in temp was one of my symptoms. For a few hours each day I would have a raised temp in the afternoon and by the evening it would return to normal.....so that was the vasculitis causing the spikes in temp. How is her blood work? Any signs of improvement there? As I mentioned to you before some people do not respond to generic Cellcept. That is not to say that the brand (Roche) is guaranteed to work but there is a better chance of it working. I have never had a higher than normal WBC on Cellcept except when I have had a bout of diverticulitis and antibiotics took care of that.

Hope you get your answers soon

Rose

[mrtmeo]

Cellcept usually takes a few weeks before being effective. Does she have any other signs of infection? I remember a few months before my diagnosis and treatment, daily spikes in temp was one of my symptoms. For a few hours each day I would have a raised temp in the afternoon and by the evening it would return to normal.....so that was the vasculitis causing the spikes in temp. How is her blood work? Any signs of improvement there? As I mentioned to you before some people do not respond to generic Cellcept. That is not to say that the brand (Roche) is guaranteed to work but there is a better chance of it working. I have never had a higher than normal WBC on Cellcept except when I have had a bout of diverticulitis and antibiotics took care of that.

Hope you get your answers soon

Rose

Hi Rose,
That is exactly what has been happening is that her temp goes up slightly in the mornings and returns to normal later in the day.
She won't get another cbc until next tuesday, so not sure where her wbc count is right now.
She is only on 500mg morning and 250mg cellcept nightly, so not sure if her dose is high enuf, yet.
She only weighs 107lbs, so not sure if weight makes a difference or not.
Most people seem to be on 2gms per day.

[mrtmeo]

Hi Rose,
Were u in remission when u started the cellcept?

My mom has not reached remission, yet and her kidneys are not getting better, so this why the mofetil.
The rtx didn't seem to do the job that others rave about but my mom has MPA and not GPA.

[Rose]

Yes, I was. I had 6 x 1 monthly IV cyclophosphamide which got me in remission. Then I started the imuran which I was on for 5 weeks and had a bad reaction to. Following that I started on Cellcept which has kept me in remission for almost 6 years.

My spikes in temp was a symptom of he vasculitis which is common in untreated WG I dont know what my blood work was on diagnosis. Like most of the other sufferers I had never heard of Wegeners and knew nothing in those early days as to treatment, monitoring etc....and too sick to care!

It could be that the Cellcept has not kicked in yet. I take 1.5g daily, double your mothers dose but I am also much heavier (pred weight which I cannot shift though only take 2.5mgs daily for the past few years) Hoping that it starts to work soon and that Tuesday's blood work shows some improvement

Rose

[mrtmeo]

Yes, I was. I had 6 x 1 monthly IV cyclophosphamide which got me in remission. Then I started the imuran which I was on for 5 weeks and had a bad reaction to. Following that I started on Cellcept which has kept me in remission for almost 6 years.

My spikes in temp was a symptom of he vasculitis which is common in untreated WG I dont know what my blood work was on diagnosis. Like most of the other sufferers I had never heard of Wegeners and knew nothing in those early days as to treatment, monitoring etc....and too sick to care!

It could be that the Cellcept has not kicked in yet. I take 1.5g daily, double your mothers dose but I am also much heavier (pred weight which I cannot shift though only take 2.5mgs daily for the past few years) Hoping that it starts to work soon and that Tuesday's blood work shows some improvement

Rose

Hi Rose,
I pray your blood work looks good on Tuesday too!
As far as weight, a low carb diet helps get some weight off if keep the protein to your minimum needs.
Lots of veggies and fat too.
Sugar is the only thing that causes fat storage and the liver can convert extra protein to sugar for storage.

[mrtmeo]

Yes, I was. I had 6 x 1 monthly IV cyclophosphamide which got me in remission. Then I started the imuran which I was on for 5 weeks and had a bad reaction to. Following that I started on Cellcept which has kept me in remission for almost 6 years.

My spikes in temp was a symptom of he vasculitis which is common in untreated WG I dont know what my blood work was on diagnosis. Like most of the other sufferers I had never heard of Wegeners and knew nothing in those early days as to treatment, monitoring etc....and too sick to care!

It could be that the Cellcept has not kicked in yet. I take 1.5g daily, double your mothers dose but I am also much heavier (pred weight which I cannot shift though only take 2.5mgs daily for the past few years) Hoping that it starts to work soon and that Tuesday's blood work shows some improvement

Rose

Rose,
Did you have any kidney failure before going on the Mofetil and if so, did the function get better?

[Rose]

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

[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

I thought the mofetil would help since the rtx is already in her system.
I will have to ask her neph to see if she would qualify.
Thanks.

[Jaha]

I have been on Cellcept since late 2012, 2000mg per day. I'm not in remission yet and I've had MTX, Imuran, CTX and 4 rounds of RTX, I also take 15mg preds per day and Batrium MWF. I also have COPD which is a complication. I seem to get my fair share of infections and usually have to take antibiotics and go off the Cellcept until the infection goes away. My Doc is going to try to just get me to doing RTX every six months. My WBC is always high, some caused by the preds. I really believe if the doc had put me on the CTX to begin with I would have been in remission by now. I wish you all the best for getting your Mother feeling better soon.

[mrtmeo]

I have been on Cellcept since late 2012, 2000mg per day. I'm not in remission yet and I've had MTX, Imuran, CTX and 4 rounds of RTX, I also take 15mg preds per day and Batrium MWF. I also have COPD which is a complication. I seem to get my fair share of infections and usually have to take antibiotics and go off the Cellcept until the infection goes away. My Doc is going to try to just get me to doing RTX every six months. My WBC is always high, some caused by the preds. I really believe if the doc had put me on the CTX to begin with I would have been in remission by now. I wish you all the best for getting your Mother feeling better soon.

Hi Jana,
I am beginning to think that cytoxan should be used first for about 3 months and then, use an immunosuppressant if in CR or rituxan if not in remission.
ctx works faster and rtx seems to augement if ctx doesn't do it after 3 months.
I am not sold on the rtx only model.
I am really sorry that u have to deal with COPD ontop of this disease.

How long were u on cytoxan?

[Jaha]

I agree that CTX should be the induction med, when a organ is involved. I really feel That I would have gone into remission if I had been given it 1st, avoiding then all the preds. I was on an oral dose of CTX for 6mos., only to find out later that the dose I was given was to low. The doc a Wegs specialist said to me oh I meant to have you on higher dose, but we can't ever take that again you know. My COPD is stabilized right now, so that at least is looking good. I hope your Mom improves soon.

[mrtmeo]

I agree that CTX should be the induction med, when a organ is involved. I really feel That I would have gone into remission if I had been given it 1st, avoiding then all the preds. I was on an oral dose of CTX for 6mos., only to find out later that the dose I was given was to low. The doc a Wegs specialist said to me oh I meant to have you on higher dose, but we can't ever take that again you know. My COPD is stabilized right now, so that at least is looking good. I hope your Mom improves soon.

Hi Jana,
What drug did they give u for induction of remission?
How much ctx per day were u taking?

[Jaha]

They started me on MTX and 60 mgs preds. I think she had me on 40mg per day maybe, and it should have been 60mg, I might be wrong about dose, but I know she meant to have me on a larger dose and messed up on the rx.

[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,
When u went on the mofetil, did it make your kidney function worse before getting better?
The mofetil is making my mom's creatinine worse and her anemia worse due to the bone marrow suppression.
However, the blood in her urine seemed to stop.

[Rose]

Hi Rose,
When u went on the mofetil, did it make your kidney function worse before getting better?
The mofetil is making my mom's creatinine worse and her anemia worse due to the bone marrow suppression.
However, the blood in her urine seemed to stop.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

[mrtmeo]

They started me on MTX and 60 mgs preds. I think she had me on 40mg per day maybe, and it should have been 60mg, I might be wrong about dose, but I know she meant to have me on a larger dose and messed up on the rx.

For my mom, they used approx 1mg/kg of prednisone.
He wanted her on less due to her age.

[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?

[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?

NO. I think most people suffer from the opposite whilst on cellcept. I did google to see if constipation could be a side effect and it seems it can be though not as common as diarrhoea.

I hope the cellcept is indeed working for your mother. When are her next labs?

Rose

[mrtmeo]

NO. I think most people suffer from the opposite whilst on cellcept. I did google to see if constipation could be a side effect and it seems it can be though not as common as diarrhoea.

I hope the cellcept is indeed working for your mother. When are her next labs?

Rose

Her next labs are Nov 11th.

[mrtmeo]

She did have some kind of stomach bug 3 days ago that caused her to throw up and go number 2 many times, but it stopped after 5 hrs.
It happened 6 hrs after taking the mofetil, so I don't think it was from that.
The next day she was fine but didn't go number 2.
The 3rd day, she ate less and had an upset stomach at night before the mofetil and still didn't go number 2.
Today, she is still constipated with less appetite, but I had dropped her mofetil dose the past 2 nights.

[grandmaT]

I just began Cellcept 500 mg 2 x day. I also had 6 X 1 monthly IV cyclophosphamide this year beginning Feb. Current issues are recurrent bladder infections. Continued antibiotic therapy of various kinds. Within 3 days of ended dosage, bladder infections come back. Had MG since 2010 began in sinus. Have kidney involvement of a WG mass. Sorry can't help you right now, but will follow posts

[mrtmeo]

I just began Cellcept 500 mg 2 x day. I also had 6 X 1 monthly IV cyclophosphamide this year beginning Feb. Current issues are recurrent bladder infections. Continued antibiotic therapy of various kinds. Within 3 days of ended dosage, bladder infections come back. Had MG since 2010 began in sinus. Have kidney involvement of a WG mass. Sorry can't help you right now, but will follow posts

Hi GrandmaT,
It sounds like you have had a rough time like many of us.
What is MG?
Have u tried cranberry extract and probiotics or yogurt and kefir?
My grandma had bladder surgery and would always get several bladder infections requiring iv antibiotics, but after using the cranberry extract, she never got another infection.

[grandmaT]

Hi GrandmaT,
It sounds like you have had a rough time like many of us.
What is MG?
Have u tried cranberry extract and probiotics or yogurt and kefir?
My grandma had bladder surgery and would always get several bladder infections requiring iv antibiotics, but after using the cranberry extract, she never got another infection.

MG typo. I meant WG for Wegener's. Will try the extract. Thanks

[mrtmeo]

MG typo. I meant WG for Wegener's. Will try the extract. Thanks

How are you doing on the cellcept and how long have you been on it?

[mrtmeo]

Well, It took about the same time around 3 weeks for my mom to get sick on the mofetil like she did on the imuran.
I don't understand why these immune suppressants cause her the nausea and diarrhea so badly.
I don't what else she can do.

[mrtmeo]

I decided to ask her dr if she could get mofetil or imuran in an injectable form.
Will find out next week.

[mrtmeo]

Dr said that injectable Mofetil or Imuran requires an IV.
I found out that is an Enteric Coated Mycophenolate Sodium which is much more tolerable for those with GI issues.
I asked her Dr if she can try that one instead.
Here is a study showing that it was more tolerable.
Enteric-coated mycophenolate sodium reduces gastrointestinal sympto... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/20005359)

Also, I think the mofetil was working and want to keep using it if possible versus another round of Rituxan.

[mrtmeo]

update:
After a month on 1gm Mofetil, my mom's anemia seemed to be going away, but had to drop her dose back to 750mg due to vomitting.
She goes for Epogen shots every 2 weeks and always needs one, but this time she didn't need one.
Two more weeks and she still didn't need another shot of Epogen, but her hemoglobin went down .2 which isn't bad.
I was hoping it would have kept going up, so put her back on 1 gm Mofetil again.
She had also, started electro acupuncture which was clinically proven to improve proteinuria, kidney function and anemia.
[The clinico-laboratory effects of acupuncture in patients with glo... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/10476672)

We will see if things improve at the next shot interval.

[Dkathleen]

I hope all goes well

[mrtmeo]

I hope all goes well
Hi Kathleen,
Thanks, but my keeps getting severe diarrhea and vomitting on 1gm mofetil, so I have to keep her at 500 - 750mg to avoid it.
I sure wish this would work without these side effects.

[mrtmeo]

update:
My mom is back to anemia. after 2 weeks starting with a hemoglobin of 11.2, it was down to 9.3 and she needed an epogen shot.
I had to drop her mofetil dose from 1gm down to 500 for a couple days and up to 750mg, so this dose doesn't work.
I will try 1gm once every 2 days and see if she can handle it.
It looks like the dose builds up over time and there might be a sweet spot.

When she would get diarrhea, it was explosive and a big mess and 7-8 times per day, so it is not tolerable at 1gm per day every day.
Also, she doesn't get sick from it right after taking the pills but 6-8 hours later.
The neph said that this drug is broken down in the liver and it is the metabolized mycophenalic acid that it converts to that makes her sick.