Reducing Cellcept? I'm Afraid to Eat...

[RuthWells]

I'm 9.5 weeks post-transplant (living related donor) and have had very few hiccups until the last week.  While I had had some early mild digestive upset, easily controlled with Immodium, the last week has been gawd-awful.  Not only the big D word, but a lot of painful intestinal cramps, as well.  I had been gaining strength and energy, and the last week seems to have set me back several weeks.

I'm seeing my transplant neph in the morning, and I know he's going to suggest cutting back on Cellcept.  The idea scares me, as I don't want to risk the new kidney.  Have any of you been in this position and reduced Cellcept?  What was the impact for you?

[Chris]

Yes, and that is why they reduced the dosage, but they also monitored my blood and other immuno to. Since I was in the hospital when they did this, it seemed they took blood everyday. However when CellCept gave me problems again, I was switched to Myfortic that required weekly blood test for a couple months, but that was also done when I was taken fully off CellCept/ Myfortic and switched to Rapamune.
 
This is normal though to have imunos lowered and at times increased or even stopped (depends how sick you are). You will be fine, but any concern you have, be sure to ask your physician/ tx team.
 
Good Luck and Hope You feel better.

[Katonsdad]

Had the same symptons after transplant and it was CMV .  I thought I was going to die.
Havre them check for that .

katonsdad

[WishIKnew]

Ruth, your story could be mine exactly.  Transplant Jan 26th.  Did really well until the end of March when the diarrhea and stomach problem became, as you put it, gawd awful.  I ended up in the hospital for 5 day with what they s'm still trying to get the energy and optimism back that I had in March!  Wishing you the best!!!!!

[jeannea]

Could be CellCept. But definitely have them check for CMV colitis. Hope you feel better soon.

[RuthWells]

Thanks, everyone.  Would CMV cause any other symptoms?  I will definitely ask about it tomorrow.

I really appreciate the input.  I expected to bounce right out of this and it's a little scary that I haven't.

[paris]

I had similar symptoms, dosage was cut twice until we found a good balance for me.  Each person is different.  It does take a few months to get everything running close to normal.  Definately talk to transplant team.   Let us know how you are.   

[Chris]

When I had CMV twice, symptoms where different for each one. There are many different symptoms wth t also. While I may have so and so symptom, someone else can be having a different sort of symptoms.
A blood test biopsy (of afected organ, or a colonoscopy can determine CMV.

[Katonsdad]

When I had CMV twice, symptoms where different for each one. There are many different symptoms wth t also. While I may have so and so symptom, someone else can be having a different sort of symptoms.
A blood test biopsy (of afected organ, or a colonoscopy can determine CMV.

 you had it twice , You poor guy . I had it 1 time and thought I was dieing .

[RuthWells]

Well, since I'm still on Valcyte (anti-viral), doc is pretty sure it's related to the Cellcept (though he did draw blood to rule out CMV just in case).  We're cutting Cellcept from 2000 mg/day to 500 mg/day.  He says it could be a good 2 weeks before I feel all better.... So I guess it's another 2 weeks of bananas for me.  : (

Thank you all for your input!

[Chris]

When I had CMV twice, symptoms where different for each one. There are many different symptoms wth t also. While I may have so and so symptom, someone else can be having a different sort of symptoms.
A blood test biopsy (of afected organ, or a colonoscopy can determine CMV.

 you had it twice , You poor guy . I had it 1 time and thought I was dieing .

I think t was due to them stopping Cytovene/ Gancyclovir early. I should have kept taking the plls till they were all gone instead of letting them go to waste. Now when they thought I had it again, they had to do a colonoscopy to make sure since it was only showing trace amounts in the blood. The first episode was the worst though because it was effecting the liver. The liver swelled and became very painful and then the biopsy there should have been done while I was out cold!

[jeannea]

So many docs don't seem to understand you shouldn't just stop Valcyte. You need a taper schedule to reduce it slowly and watch for symptoms.

[mcclane]

I never had any intestinal cramps, but due to low white blood cell count, my hospital told me to hold off on myfortic (same as cellcept ?) for about 1.5 weeks.  They also told me to hold off on the anti cmv med too, and I haven't taken that in 3 weeks.

Hospital told me they can deal with cmv easier than a rejection episode.  Other than a nasty cold, I haven't ran into any issues.

[RuthWells]

CMV test came back negative and I'm going to clinic tomorrow for repeat bloods and probably IV fluids.  I've been on 50% of the starting Cellcept dose for almost 48 hours and if anything I've gotten worse.  Is this normal?  For those who have gone through the Cellcept reduction, how long did it take for you to notice an improvement?

So frustrating!

[Chris]

CellCept reduction was not an overnight event, it was about 4 days for me for the reduction in paper stock use to take effect. However, keep notes on your progress to let the doctors know. There is a chance that maybe your body can not tolerate CellCept to and luckily there are other meds out there.

[RuthWells]

Thanks, Chris, that gives me some hope.  Though I may starve to death before I get to 4 days!!  Even bananas are making me naseous at this point.

[Chris]

For me, tomatoes does it easly for me. Have you tried something else high in potassium?

[RuthWells]

Hubby bought me some mango ice pops, and they're staying down okay. 

[RuthWells]

A brief update.  Blood work Thursday AM had my creatinine continuing to rise, and my heart rate was high (120), so I was admitted overnight for fluids (which brought everything in line) and observation.  We've stopped the Cellcept altogether and replaced with imuran.  I've been home since Friday, still having tummy issues but want to kill myself slightly less than I did 5 days ago.  Doc says the Cellcept could take a week to flush out of my system and if I'm still having issues at that time, he'll order a colonoscopy to rule out CMV definitively (apparently very rarely the blood test doesn't pick it up).

Meanwhile, I've got a stockpile of Cellcept that I can't use.  Does anyone know of a service that would pass them along to someone in need?

[Chris]

I had a stockpile of CellCept and Myfortic that just had to be thrown out (taken to recycle center) because the transplant center could not use them due to laws.
 
I hope the med chaange helps.

[RuthWells]

I know that centers can't take unused meds, but I was hoping for some under-the-table service that would distribute to the needy... Like Medicare patients whose meds are only covered for 3 years.  Seems such a waste.