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

@webiondev

Thanks @rosemarya After reducing cellcept dose from 2g to 1g my creatinine came down. I read that evelvated creatinine is a side effect of cellcept.

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@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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@gaylea1

@mostlybill I believe it is your post regarding nutrition? I eat mainly beans, legumes,nuts,dairy and dark leafy vegetables. I have had no desire to eat meat especially post transplantation. I eat a banana and a greek yoghurt every day. These are all foods I am encouraged to eat. What reason did the doctor give you for having to avoid these foods? That certainly does limit your diet! I take tacrilomus (1mg every 12 hours). Is the restricted diet interfering with your medications? I am having a hard time comprehending this.

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I am envious.I have bananas and oranges drying up in my cupboard. The immunosuppressant drugs, Cyclosporine and prednisone, are causing kidney problems as well as high blood pressure. I need to limit the amount of potassium I take in because my kidneys cannot process it. High potassium levels in blood can lead to heart attack as I understand it. My preferred diet of beans, greens, bananas, whole grains, etc, has been replaced by pasta, white rice, corn, apples grapes. I need to limit portions when I eat foods like beans or yogurt, fish. I find it hard to stay with it, and confusing as to how to have a healthy diet.

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@mostlybill

I am envious.I have bananas and oranges drying up in my cupboard. The immunosuppressant drugs, Cyclosporine and prednisone, are causing kidney problems as well as high blood pressure. I need to limit the amount of potassium I take in because my kidneys cannot process it. High potassium levels in blood can lead to heart attack as I understand it. My preferred diet of beans, greens, bananas, whole grains, etc, has been replaced by pasta, white rice, corn, apples grapes. I need to limit portions when I eat foods like beans or yogurt, fish. I find it hard to stay with it, and confusing as to how to have a healthy diet.

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@mostlybill I second that! It's a challenge to have a palatable diet with kidney issues. But I tell myself, "the alternative sucks, so suck it up, buttercup!" Once in a great while I do have a tiny bit of what is on the no-no list, in order to avoid a full-blown binge, which I might have if not for a treat. Missing bananas and oranges…
Ginger

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I am confused about the conversation on diet, as far as I know there are no restrictions for transplants, except for things that interact with meds. I saw bananas, oranges, those might have been a no no on dialysis, but not transplant….so I'm confused, unless you have a quick rise in your creatinine.

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@ca426

I am confused about the conversation on diet, as far as I know there are no restrictions for transplants, except for things that interact with meds. I saw bananas, oranges, those might have been a no no on dialysis, but not transplant….so I'm confused, unless you have a quick rise in your creatinine.

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@ca426 We were mentioning dietary restrictions that can occur due to kidney issues. @mostlybill is experiencing some adverse effects of medications causing kidney problems. My husband follows some restrictions still, more than three years after his kidney transplant. Chief among them is his favorite juice this time of year, unfiltered apple juice/cider.
Ginger

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@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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@mostlybill Has it been suggested for you to increase your fluid intake? That helped my creatinine. They still wanted it lower though so they switched me to sirolimus but I continued to drink lots of water. Now with 60 – 70 ounces of fluid a day my creatinine is slightly over 100 which is considered to be acceptable.
JK

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Hey everyone. Iam taking advagraf and prednisolone once daily. I wish I could take all only once preferably at night. Anyone taking cellcept once daily? One of the doc said it is ok while other said take twice daily. Also how about taking prednisolone at night? I am taking 20 mg. I am having complications for some months now and doctors are still investigating what the problem is with me!

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@contentandwell

@mostlybill Has it been suggested for you to increase your fluid intake? That helped my creatinine. They still wanted it lower though so they switched me to sirolimus but I continued to drink lots of water. Now with 60 – 70 ounces of fluid a day my creatinine is slightly over 100 which is considered to be acceptable.
JK

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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

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
@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.

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@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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