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Cellcept and increased creatinine

Posted by webiondev @webiondev, Nov 3, 2019

Hey everyone. I have been hearing always cellcept is safe for Kidneys but recently my dose was increaed to 2g and today my creatinine increased to 141 which is 1.4

Anyone experience this?

Thanks
rahman

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 10, 2019
In reply to @mostlybill "They do ask about water intake. Sometimes I walk away feeling confused. I carry a notebook..." + (show)
@mostlybill

They do ask about water intake. Sometimes I walk away feeling confused. I carry a notebook into each appointment, and my wife is with me as an extra set of ears. I also request that instructions for changes be provided in writing. But the reality is, when I get home I feel confusion about diet. The numbers seem to change week to week. One week everything is normal and I'm told not to worry. Then next time creatinine and potassium is out of bounds and I'm back to worrying about diet. One of my problems is forgetting to take water with me in the morning. I get on a job site for 8 hours and I'm stuck. I need to secure a reusable water bottle.

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@mostlybill, It sounds like you have come up with a good plan! Notebook to appointments, wife going with you, written changes from care provider, and a reusable water bottle. As you have mentioned, it is easy to become confused when you get home, especialluy when considering dietary requirements. Has your transplant team suggested or referred you to a nutritionist who is knowledgable about post transplant needs? That is something that might be helpful for you and your wife to consider asking about.

Hydration must be difficult for you to maintain if you are on a job site all day. I have noticed that when men are on a construction site, or when I see trucks going down the road to a site/job, that there is uaually a big orange canister for drinking water. Do your sites have any accessable drinking water for the crew? Have you thought about carrying some bottled water in your car or truck so that when you get to the site, you will be sure to have one?
I carry a reusable water bottle and am careful not to misplace it, and I have several, just in case. My brother used to fill a clean plastic milk jug(s) with water and put that in his truck every morning, or the night before.

Mostlybill, I learned that getting into the habit of drinking enough water on a daily basis takes practice. But over time it becomes a normal routine. Have you thought about recruiting your wife to remind you every morning to take the water? Does she have any ideas for how to help you? How about a buddy at work?

REPLY
webiondev | @webiondev | Dec 12, 2019
In reply to @rosemarya "@webiondev, It sounds like you and your doctor are working together and getting improved lab results...." + (show)
@rosemarya

@webiondev, It sounds like you and your doctor are working together and getting improved lab results. If you read the list of side effects with cellcept (and other meds, too) you will find elevated creatinine on the list. That is the reason that our transplant team requires routine labs for us - so medications and diets can be modified to best meet the needs of our own individual bodies. I currently am on a routine plan for transplant related labs, however, I occasionally need an additional lab for one reason or another.
How often are your labs drawn? What plans, if any, had your doctor made to follow up on your creatinine/cellcept relationship?

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Hi @rosemarya My problem is more than cellcept. I have a complicated biliary situation due to transplant surgery itself. ERCP helped a bit but I need long term monitor. It is not a disease but a structural situtation. My doc wants to increase cellcept to 1500 mg total and try stop prednisolone. I do my labds twice every month.

REPLY
webiondev | @webiondev | Dec 12, 2019
In reply to @mostlybill "Even weeks after dropping Cellcept, my creatinine remains high, and potassium as well. I am vitamin..." + (show)
@mostlybill

Even weeks after dropping Cellcept, my creatinine remains high, and potassium as well. I am vitamin D and magnesium deficient also. I feel good, but I worry in spite of the doctor's assurance things are good. I am trying to do my best with diet, but even after several consults with the nutritionist, it can be confusing understanding which foods to eat. Beans and whole grains are out. Dark leafy greens are out. No bananas, oranges, potatoes, nuts and dairy. It seems like I need to avoid or limit all of my favorite foods.

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Have you tried Ketosteril for kidneys? My doc once gave me this to tackle Tacrolimus hamr but my kidneys, thank God are not so bad so I am not taking them.

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