1. < Kidney & Bladder

Just started on CellCept the side effects are scary

Posted by codered032 @codered032, Oct 10, 2023

My remission lasted less than 2mos! I was in remission after taking Tacrolimus for 2years. All of my labs were normal with no proteinuria. In less than 2mos proteinuria had doubled. My nephrologist is starting me on CellCept. I am very sensitive to all medications and my anxiety is overwhelming. If my MCD doesn’t destroy my kidneys I fear that the side effects from CellCept might be worse. I currently have no chronic medical conditions other than MCD and osteoarthritis. Please share any side effects from taking CellCept.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 11, 2023

@codered032 Is there anything else that your nephrologist could suggest you try? Do they understand your concern?

From WebMD, here is their blurb about CellCept: https://www.webmd.com/drugs/2/drug-4067-2108/cellcept-oral/mycophenolate-mofetil-oral/details
Ginger

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codered032 | @codered032 | Oct 12, 2023

Good Morning Ginger, I am on day 4.5 of CellCeft and all ready having what I think are serious side effects. Sore thigh muscles, stiffness, bone pain and this morning s swollen lymph gland. No lower extremity edema. I sent a message to my Neurologist and waiting on a reply. I don’t tolerate medication well at all. This is the main reason I opted not to take the infusion. Thank you for reaching out.

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1 reply
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Oct 16, 2023

@codered032 I’m sorry I don’t know what MCD is so I’m unsure why it has been prescribed for you. My experience with Cellcept was nearly 18 years ago for immune suppression post pancreas transplant. I tolerated it really well and had no side effects except that my white blood cell count dropped. I was switched to Sirolimus (Rapamune). I agree with Ginger that you should discuss your concerns with your nephrologist. Have you had a chance to do that?

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2 replies
kssunflower | @kssunflower | Oct 17, 2023

I have been on CellCept for almost 4 years and haven't noticed any side effects. My kidney function has improved and i no longer have protein in my urine. Hoping you can find an option that works well for you.

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donsunlover | @donsunlover | Oct 20, 2023
In reply to @cehunt57 "@codered032 I’m sorry I don’t know what MCD is so I’m unsure why it has been..." + (show)
@cehunt57

@codered032 I’m sorry I don’t know what MCD is so I’m unsure why it has been prescribed for you. My experience with Cellcept was nearly 18 years ago for immune suppression post pancreas transplant. I tolerated it really well and had no side effects except that my white blood cell count dropped. I was switched to Sirolimus (Rapamune). I agree with Ginger that you should discuss your concerns with your nephrologist. Have you had a chance to do that?

Jump to this post

I found this article that suggest a co-treatment for transplant patients that may be beneficial. This is an old study and more current studies should be done.
https://pubmed.ncbi.nlm.nih.gov/20565374/

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codered032 | @codered032 | Oct 20, 2023

Thank you for sharing. My Prot/Creat dropped from 5.79 to 3.28 in 7days so it appears that the CellCept is working. I am having labs every seven days to monitor my symptoms 😊

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codered032 | @codered032 | Oct 20, 2023
In reply to @codered032 "Good Morning Ginger, I am on day 4.5 of CellCeft and all ready having what I..." + (show)
@codered032

Good Morning Ginger, I am on day 4.5 of CellCeft and all ready having what I think are serious side effects. Sore thigh muscles, stiffness, bone pain and this morning s swollen lymph gland. No lower extremity edema. I sent a message to my Neurologist and waiting on a reply. I don’t tolerate medication well at all. This is the main reason I opted not to take the infusion. Thank you for reaching out.

Jump to this post

Good news I hope my Prot/Creat dropped from 5.78 to 3.28 in 7days. I going to continue with this plan and I am feeling better about the side effects

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codered032 | @codered032 | Oct 20, 2023
In reply to @cehunt57 "@codered032 I’m sorry I don’t know what MCD is so I’m unsure why it has been..." + (show)
@cehunt57

@codered032 I’m sorry I don’t know what MCD is so I’m unsure why it has been prescribed for you. My experience with Cellcept was nearly 18 years ago for immune suppression post pancreas transplant. I tolerated it really well and had no side effects except that my white blood cell count dropped. I was switched to Sirolimus (Rapamune). I agree with Ginger that you should discuss your concerns with your nephrologist. Have you had a chance to do that?

Jump to this post

MCD is a chronic kidney disease that causes elevated proteinuria. Thank you for your support

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kausarzaman48 | @kausarzaman48 | Oct 23, 2023

I took Cellcept 2000 mags a day for over 16 years. Initially had a few dude effects but hung in there and body got used too. I had an autoimmune disease called vasculitis.
Now have Epithelial call cancer of ureter. Resected. No spread. Thank God.

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