Finally In Remission: Is it possible for my kidney disease to improve?

Posted by codered032 @codered032, Apr 11, 2022

At my last nephrologist appointment 3/9/22 I was informed that I had been in remission since April of 2021. I was told this only after I asked. I am currently taking Tacrolimus 3mg every 12 hrs. I will have to remain on this until April 2023, total os 24 months before any changes in medication. Despite unpleasant side effects I think the benefits out way the bad. My eGFR is at 59, down from 62 since a change from eGFR AA. I am currently dx at stage3a CKD. Has anyone had an increase in there EGFR since being in remission. Is it possible for my kidney disease to improve?

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@bmonroe

My GFR is 19
I’m having anxiety
My Doctor is no help does not communicate with me at all
I’m scared
Just says see you in a month

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Go to another nephrologist for second opinion? No need to sit around and worry by yourself.

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I am confused. You want your GFRs to go UP not DOWN. You mentioned a decrease in your GFR.
You have not mentioned your diet. It is all about diet with kidneys. I went from 3 a or b - no one sure(?) to Stage 2, in a six-month period with radical changes to my diet and not eating ANY of the foods considered off-limits for kidney disease.

Get a new kidney doctor.

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@bmonroe

My GFR is 19
I’m having anxiety
My Doctor is no help does not communicate with me at all
I’m scared
Just says see you in a month

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@bmonroe It has been about a month now since you posted. I am wondering how you are doing now, and what your doctor has said to you this time?

Looking forward to hearing from you!
Ginger

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@codered032

Thank you for the information.

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Thank you for pointing out the difference in using different labs. My nephrologist is over 100 miles from my home one way. Because I plan on having some telemedicine visits I request that my lab orders be sent to my local lab for consistency in processing. So thankful for technology, I and all of my doctors can review my medical and track my treatment plan on line. I also weigh my self at home on the same scale about the same time several times a week. CKD is a life changer but I have learned that it is manageable with good knowledge and a good support system. My thanks to all who contributed to this site.

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@codered032

Thank you for pointing out the difference in using different labs. My nephrologist is over 100 miles from my home one way. Because I plan on having some telemedicine visits I request that my lab orders be sent to my local lab for consistency in processing. So thankful for technology, I and all of my doctors can review my medical and track my treatment plan on line. I also weigh my self at home on the same scale about the same time several times a week. CKD is a life changer but I have learned that it is manageable with good knowledge and a good support system. My thanks to all who contributed to this site.

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@codered032 Being able to have your labwork done more local to you will ease a lot of stress, no doubt! Like you, my nephrologist and oncologist are 2 hours each way, north of me. I use the lab closest to me [25 miles each way] whenever possible, and results are sent to everyone, including my primary care person. Of course, each visit to the oncologist means a set of blood is pulled right there, at the cancer center, so I have learned to expect a few differences in the values.

When we have a chronic condition like CKD, or any other, it is comforting to have others to turn to, to ask questions and get support. Yes, reach out and know there are others nearby to help you along!
Ginger

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@codered032

Hello echunt57 I was diagnosed with MCD in 2019. I don’t have diabetes not high blood pressure, nor any other chronic illness. MCD presents with proteinuria. I take Tacrolimus 3mg twice daily to decrease the proteinuria. My GFR is between 50-62. All of my other labs are considered stable. According to my treatment plan I have been in remission for over a year. If things remain stable I will start to taper off Tac next April.

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Is Tac the only medicine you take? Did you use to take others? How did you achieve remission - meds, diet, etc? Thanks!

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@susanna82

I am confused. You want your GFRs to go UP not DOWN. You mentioned a decrease in your GFR.
You have not mentioned your diet. It is all about diet with kidneys. I went from 3 a or b - no one sure(?) to Stage 2, in a six-month period with radical changes to my diet and not eating ANY of the foods considered off-limits for kidney disease.

Get a new kidney doctor.

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Can you please tell me what radical changes you made?

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You need to find a kidney doctor who understands that you need to start now. My first nephrologist told me I did not have to do anything. in Stage 3a or b.
Ask for a referral to a nutritionist/dietician who works with kidney patients. It is all about diet.
I began with no help and a diagnosis that was discovered by accident. So I got on the web and began to become informed.
Check out the Kidney Websites. https://www.kidney.org/
Private businesses/websites specializing in living with kidney disease:
There are prominent website websites that publish their Kidney programs:, It is not my place to recommend any private businesses, but you need to start with the Kidney Foundation and other government programs and begin to learn all you can. The main thing is the diet.
If you eat meat, GIVE IT UP NOW. Also, give up dairy, salt, and most sugar, and discuss all this with a dietician who has experience with kidney patients and kidney disease.
That will start you off.
You need to eat fruits and vegetables.
My immediate goal, after I began to figure this all out, was to raise my GFR - kidney function. I have done that- and am now in Stage 2 after starting in Stage 3, where yu are.

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@krcc

Is Tac the only medicine you take? Did you use to take others? How did you achieve remission - meds, diet, etc? Thanks!

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Tac is the only medication that I take for my CKD. No other chronic illnesses

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@codered032

Tac is the only medication that I take for my CKD. No other chronic illnesses

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FYI I am very care about any medications and supplements that I take. I take nothing that will over work my kidneys. I research all medications and supplements and clear them with my nephrologist and Pharmacist. I have limited most my supplements. No NSAID. No beef or pork. Very little salt. I try hard not to get stressed. CKD is difficult to manage. I follow my labs closely and adjust my life based on my labs.

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