Stage 3 chronic kidney disease (CKD): What specialists do I see?

Posted by rozalia @rozalia, Aug 24, 2016

My primary says I do not need to see a kidney specialist. Is this true. My blood chems are ok.

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@rkndvm

Yes. Remissions are possible and the ultimate goal. I personally had a 4 month remission in late 2020 with high doses of prednisone. I am currently back on 50 mg of prednisone daily for severe proteinuria and I am trying to research the other immunosuppressants my nephrologist has offered…. Tacrolimus being one of them. I’m afraid side effects are a given. Pros and cons to all drugs. I am familiar with prednisone side effects and fear adding tacrolimus or mycophenolate, my current options.
What side effects do you see/feel?

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I am exploring stem cell (regenerative med) if my condition doesn’t improve. Have you researched this opinion?

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@codered032

I am exploring stem cell (regenerative med) if my condition doesn’t improve. Have you researched this opinion?

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No, I have not. Has not been an option in any of the research I’ve done. Interesting…… I will check it out.

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@rkndvm

Hi Rosemary,
I would be interested in your dose of tacrolimus and side effects input. My nephrologist does not have another MCD patient. He recommended Mycophenolate since that his what many of his transplant patients take.
What are your thoughts on a 3rd COVID-19 immunization?

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I’m Rosemary I am still researching the evidence for a 3rd vaccine. I take a flu shot ones a year because the flu virus mutates. I have lost several family members to Covid-19. One was a healthy 17yo football player. I am leaning towards taking a third shot

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@codered032

Hello I was dx with MCD overa year ago. I had never heard of it prior to my dx. I was treated with Prednisone with limited results. I started taking Tacrolimus 3 months ago, 3mg 2X daily. Besides being expensive I hate the side effects. Can anyone tell me how often you have to have blood levels done? Is it possible to go into full remission of MCD?

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@codered032, @rkndvm
I don't have any experience with Minimal Change Disease. If you haven't seen this information in the NIH (National Institute of Health) Rare Diseases Section I want to share it in hopes that you can find some answers to your questions.
Minimal change disease
https://rarediseases.info.nih.gov/diseases/9147/minimal-change-disease

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@rosemarya

@codered032, @rkndvm
I don't have any experience with Minimal Change Disease. If you haven't seen this information in the NIH (National Institute of Health) Rare Diseases Section I want to share it in hopes that you can find some answers to your questions.
Minimal change disease
https://rarediseases.info.nih.gov/diseases/9147/minimal-change-disease

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Thank you Rosemary.

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@rosemarya

@codered032, @rkndvm
I don't have any experience with Minimal Change Disease. If you haven't seen this information in the NIH (National Institute of Health) Rare Diseases Section I want to share it in hopes that you can find some answers to your questions.
Minimal change disease
https://rarediseases.info.nih.gov/diseases/9147/minimal-change-disease

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Rosemary thank you for the information. I will follow up

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@jenny52

Hi I would like to know what kind of foods is best for me I’m stage 3 (CKD)

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Hi Rosemary I am just checking in. I have been taking Tacrolimus for 4-5 months. My current base level is 5.8. I am still trying to learn about the serious side effects. I am very sensitive to medications and I am experiencing every side effects listed. My pharmacist recently charged my formula to a generic brand. I was taking Prograf but I have a discount coupon and I was given a generic Rx which I can’t seem to find on line. Does anyone know if there is a difference in the effectiveness of Prograf Vs generic Tacrolimus?

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@codered032

Hi Rosemary I am just checking in. I have been taking Tacrolimus for 4-5 months. My current base level is 5.8. I am still trying to learn about the serious side effects. I am very sensitive to medications and I am experiencing every side effects listed. My pharmacist recently charged my formula to a generic brand. I was taking Prograf but I have a discount coupon and I was given a generic Rx which I can’t seem to find on line. Does anyone know if there is a difference in the effectiveness of Prograf Vs generic Tacrolimus?

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I requested and have been scheduled with a dietitian to discuss appropriate diet changes. The internet is full of recommendations.

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@codered032

Hi Rosemary I am just checking in. I have been taking Tacrolimus for 4-5 months. My current base level is 5.8. I am still trying to learn about the serious side effects. I am very sensitive to medications and I am experiencing every side effects listed. My pharmacist recently charged my formula to a generic brand. I was taking Prograf but I have a discount coupon and I was given a generic Rx which I can’t seem to find on line. Does anyone know if there is a difference in the effectiveness of Prograf Vs generic Tacrolimus?

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@codered032, I have been taking Tacrolimus and Mycophenolate Mofetil (Cellcept) for 12 years as my antirejection medications for liver and kidney transplant. When I look at the long list of the 'serious' side effects it is quite unsettling. However, I am aware of the need for these medications and I have been very fortunate to be at a stable level of dosages without any serious complications. My transplant team requires me to have labs drawn routinely to monitor the trough level that they have decided for me. My team has stressed the benefits vs the risks of any medications. My team also has instructed me that I need to be aware of potential problems and to keep up with my routine health preventive measures and to take the necessary precautions like sun protection.
I did not experience any problems when I was changed from name brand to generic when the generic became available. However, my Transplant team did order extra labs to make sure that my levels were stable. My body has accepted Tacrolimus well and I have not needed to change medications as some patients have had to do.
I get my antirejection medications through the Mayo Clinic Specialty Pharmacy where I transplanted. My transplant team and the pharmacy are both directly involved with these medications. When or if there is a dosage change or a manufacturer change, I am notified.

Are you keeping a list and monitoring when these symptoms occur? Does taking meds with or without food help? Is your doctor checking the level of tacrolimus via routine labs. (When I was at 4-5 weeks, I was having weekly labs drawn) What has your doctor told you about your side effects?

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@rosemarya

@codered032, I have been taking Tacrolimus and Mycophenolate Mofetil (Cellcept) for 12 years as my antirejection medications for liver and kidney transplant. When I look at the long list of the 'serious' side effects it is quite unsettling. However, I am aware of the need for these medications and I have been very fortunate to be at a stable level of dosages without any serious complications. My transplant team requires me to have labs drawn routinely to monitor the trough level that they have decided for me. My team has stressed the benefits vs the risks of any medications. My team also has instructed me that I need to be aware of potential problems and to keep up with my routine health preventive measures and to take the necessary precautions like sun protection.
I did not experience any problems when I was changed from name brand to generic when the generic became available. However, my Transplant team did order extra labs to make sure that my levels were stable. My body has accepted Tacrolimus well and I have not needed to change medications as some patients have had to do.
I get my antirejection medications through the Mayo Clinic Specialty Pharmacy where I transplanted. My transplant team and the pharmacy are both directly involved with these medications. When or if there is a dosage change or a manufacturer change, I am notified.

Are you keeping a list and monitoring when these symptoms occur? Does taking meds with or without food help? Is your doctor checking the level of tacrolimus via routine labs. (When I was at 4-5 weeks, I was having weekly labs drawn) What has your doctor told you about your side effects?

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Thank you for sharing. I will add you to my prayer list that you will continue to have a successful journey. I am still learning to navigate my journey.

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