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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@codered032, this is good news. I'm providing the link to your earlier discussion about Tacrolimus so members can see your history.

– My new nephrologist wants to decrease my Tacrolimus dose. https://connect.mayoclinic.org/discussion/my-new-nephrologist-wants-to-decrease-my-tacrolimus-dose/

I think @rosemarya @gingerw @nimalw @kit324miss @julieprayer @kamama94 @paul55 will be interested in your progress and have tips to share about limiting progression of CKD.

Codered, have you also made lifestyle changes to help improve your eGFR?

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@codered032 Congratulations for getting that news of being in remission!

eGFR values can range a bit, depending on hydration levels when blood is taken, or the machines used to process the samples. For me, when I use the commercial lab the value is a bit lower than when samples are processed at my cancer center. We always want to look at a trend, not necessarily the value we are seeing.

Watching your blood pressure is crucial, no matter what. Exercise, good food choices, decrease your stress as much as possible. Constant vigilance becomes second nature after a bit of time. I have known kidney patients who have increased their function significantly when they buckle down and take it as a challenge to do as well as they can!
Ginger

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@gingerw

@codered032 Congratulations for getting that news of being in remission!

eGFR values can range a bit, depending on hydration levels when blood is taken, or the machines used to process the samples. For me, when I use the commercial lab the value is a bit lower than when samples are processed at my cancer center. We always want to look at a trend, not necessarily the value we are seeing.

Watching your blood pressure is crucial, no matter what. Exercise, good food choices, decrease your stress as much as possible. Constant vigilance becomes second nature after a bit of time. I have known kidney patients who have increased their function significantly when they buckle down and take it as a challenge to do as well as they can!
Ginger

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Thank you for the information.

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@colleenyoung

@codered032, this is good news. I'm providing the link to your earlier discussion about Tacrolimus so members can see your history.

– My new nephrologist wants to decrease my Tacrolimus dose. https://connect.mayoclinic.org/discussion/my-new-nephrologist-wants-to-decrease-my-tacrolimus-dose/

I think @rosemarya @gingerw @nimalw @kit324miss @julieprayer @kamama94 @paul55 will be interested in your progress and have tips to share about limiting progression of CKD.

Codered, have you also made lifestyle changes to help improve your eGFR?

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I have eliminated all unnecessary medications and supplements that may over work my kidneys. I am compulsive about taking Tacrolimus on time. I don’t take any medication that hasn’t been cleared by my pharmacist. I try as much as possible to eat mostly a plant diet. I am very careful with antibodies, I have an abscess tooth and was prescribed antibodies. I also had a UTI and was prescribed Bactrim which immediately knocked my labs out of wack. I am fortunate enough that I don’t have any other health problems, except MCD. My biggest change is my diet.

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@codered032 I have never heard the word “remission” used regarding chronic kidney disease (CKD). I have stage 4 CKD related to diabetes. My GFR is 28. I had a pancreas transplant (in 2005) and was put on Tacrolimus as an immune suppressant to prevent rejection. I take 1.5 mg in the morning and 1 mg at night. Your post caught my attention. It is interesting.

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@cehunt57

@codered032 I have never heard the word “remission” used regarding chronic kidney disease (CKD). I have stage 4 CKD related to diabetes. My GFR is 28. I had a pancreas transplant (in 2005) and was put on Tacrolimus as an immune suppressant to prevent rejection. I take 1.5 mg in the morning and 1 mg at night. Your post caught my attention. It is interesting.

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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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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

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 Welcome to Mayo Clinic Connect!
I can well imagine you have concerns. Are you in a position to fill in some blanks before I continue a discussion on your eGFR and doctor's lack of communications with you?

What is the underlying cause of your kidney disease? Is this doctor a nephrologist? Are you on any medications?
Ginger

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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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See a doctor you trust and get a referral to another nephrologist. Yesterday. Stop eating meat right away. Look up kidney diets and web pages maintained by survivors who have diet advice. Look at National Kidney Foundation. FInd a kidney nutritionist. Haunt the web.
Follow Ginger's advice.

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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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New Dr time

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