1. < Kidney & Bladder

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 | @rkndvm | Aug 20, 2021
In reply to @codered032 "Yes, I was diagnosed following a routine annual physical. All labs were good except high proteinuria...." + (show)
@codered032

Yes, I was diagnosed following a routine annual physical. All labs were good except high proteinuria. Treated with Prednisone for several months and was in remission briefly. I am now taking Tacrolimus 6mg daily. Do you know if remission is possible? I don’t like the side effects of the medication.

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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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1 reply
rkndvm | @rkndvm | Aug 20, 2021
In reply to @rosemarya "@codered032, I'm popping in here because i see that you are taking Tacrolimus and you don't..." + (show)
@rosemarya

@codered032, I'm popping in here because i see that you are taking Tacrolimus and you don't like the side effects if this medication. I also take Tacrolimus as part of my post transplant (liver and kidney) transplant.
How long have you been taking Tacrolimus? What side effects are you experiencing?

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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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2 replies
lindes | @lindes | Aug 20, 2021

I am also stage 3. mine was caused by medication for chronic pain.. I see the kidney people of the Mayo in Rochester. I don't take any medication, and was not told to eat a specific diet. I participated in a kidney class at the Mayo, and we were told to eat some ounces of cheese every day to prevent any stones.

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1 reply
Mary Klimek | @brklimeks | Aug 22, 2021
In reply to @lindes "I am also stage 3. mine was caused by medication for chronic pain.. I see the..." + (show)
@lindes

I am also stage 3. mine was caused by medication for chronic pain.. I see the kidney people of the Mayo in Rochester. I don't take any medication, and was not told to eat a specific diet. I participated in a kidney class at the Mayo, and we were told to eat some ounces of cheese every day to prevent any stones.

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Which pain meds were you taking?

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1 reply
lindes | @lindes | Aug 22, 2021
In reply to @brklimeks "Which pain meds were you taking?" + (show)
@brklimeks

Which pain meds were you taking?

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Prescription strength Naproxen. Once the kidney problem was discovered, I stopped taking this medication and got a spinal nerve stimulator implanted. I am absolutely pain free now, and have not taken pain meds for 1 1/2 years.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 23, 2021
In reply to @rkndvm "Hi Rosemary, I would be interested in your dose of tacrolimus and side effects input. My..." + (show)
@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?

Jump to this post

@rkndvm, I am sorry that I do not remember the side effects when I began to take the Tacrolimus. I have been taking Tacrolimus and Mycophenolate since 2009 when I had my liver and kidney transplant. For 5-6 years I also took prednisone. My doses were high in the immediate post transplant period, but today I take 1.5 mg twice daily of the tacrolimus. I have routine blood labs to monitor the level of the tacrolimus in my blood.
The dose varies according to individual needs and is unique to the patient. I have been on 1.5 mg for a long time, my labs are currently every 3 months. Initially my labs were daily, weekly, biweekly, monthly and now 3 month intervals.
Tacrolimus must be taken at regular 12 hr intervals. Currently the noticeable side effects is occasional tremors. Any other effect has become part on my 'normal' living. Of course in my case, my transplant team does extra labs and checks for any unwanted effects during my annual evaluation.

I have had my 3rd Covid19 immunization. I an following the Mayo Clinic and the CDC guidance.

Are you currently taking Mycophenolate? Will you be adding Tacrolimus?

REPLY
2 replies
Mary Klimek | @brklimeks | Aug 23, 2021
In reply to @rosemarya "@rkndvm, I am sorry that I do not remember the side effects when I began to..." + (show)
@rosemarya

@rkndvm, I am sorry that I do not remember the side effects when I began to take the Tacrolimus. I have been taking Tacrolimus and Mycophenolate since 2009 when I had my liver and kidney transplant. For 5-6 years I also took prednisone. My doses were high in the immediate post transplant period, but today I take 1.5 mg twice daily of the tacrolimus. I have routine blood labs to monitor the level of the tacrolimus in my blood.
The dose varies according to individual needs and is unique to the patient. I have been on 1.5 mg for a long time, my labs are currently every 3 months. Initially my labs were daily, weekly, biweekly, monthly and now 3 month intervals.
Tacrolimus must be taken at regular 12 hr intervals. Currently the noticeable side effects is occasional tremors. Any other effect has become part on my 'normal' living. Of course in my case, my transplant team does extra labs and checks for any unwanted effects during my annual evaluation.

I have had my 3rd Covid19 immunization. I an following the Mayo Clinic and the CDC guidance.

Are you currently taking Mycophenolate? Will you be adding Tacrolimus?

Jump to this post

I’ve been on many different meds for pain including most recently Lyrica which caused such bad brain fog I had to retire early. On gabapentin now and Norco as needed. Don’t recall having been on the meds you mentioned. I do have a SCS also.

REPLY
rkndvm | @rkndvm | Aug 23, 2021
In reply to @rosemarya "@rkndvm, I am sorry that I do not remember the side effects when I began to..." + (show)
@rosemarya

@rkndvm, I am sorry that I do not remember the side effects when I began to take the Tacrolimus. I have been taking Tacrolimus and Mycophenolate since 2009 when I had my liver and kidney transplant. For 5-6 years I also took prednisone. My doses were high in the immediate post transplant period, but today I take 1.5 mg twice daily of the tacrolimus. I have routine blood labs to monitor the level of the tacrolimus in my blood.
The dose varies according to individual needs and is unique to the patient. I have been on 1.5 mg for a long time, my labs are currently every 3 months. Initially my labs were daily, weekly, biweekly, monthly and now 3 month intervals.
Tacrolimus must be taken at regular 12 hr intervals. Currently the noticeable side effects is occasional tremors. Any other effect has become part on my 'normal' living. Of course in my case, my transplant team does extra labs and checks for any unwanted effects during my annual evaluation.

I have had my 3rd Covid19 immunization. I an following the Mayo Clinic and the CDC guidance.

Are you currently taking Mycophenolate? Will you be adding Tacrolimus?

Jump to this post

Thank you Rosemary. I am currently taking prednisone only, but need to add another immunosuppressant to manage my Nephrotic Syndrome MCD. I am researching efficacy and side effects for tacrolimus and mycophenolate for my condition. I appreciate your input and am happy to read you are a long-term kidney and liver transplant patient! 👍

REPLY
1 reply
codered032 | @codered032 | Aug 23, 2021
In reply to @rkndvm "Thank you Rosemary. I am currently taking prednisone only, but need to add another immunosuppressant to..." + (show)
@rkndvm

Thank you Rosemary. I am currently taking prednisone only, but need to add another immunosuppressant to manage my Nephrotic Syndrome MCD. I am researching efficacy and side effects for tacrolimus and mycophenolate for my condition. I appreciate your input and am happy to read you are a long-term kidney and liver transplant patient! 👍

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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?

REPLY
1 reply
codered032 | @codered032 | Aug 23, 2021
In reply to @rosemarya "@codered032, I'm popping in here because i see that you are taking Tacrolimus and you don't..." + (show)
@rosemarya

@codered032, I'm popping in here because i see that you are taking Tacrolimus and you don't like the side effects if this medication. I also take Tacrolimus as part of my post transplant (liver and kidney) transplant.
How long have you been taking Tacrolimus? What side effects are you experiencing?

Jump to this post

Hi Rosemary I was started on Tacrolimus 5 months ago, 6mg 2X day at $600/mo. My last level was 5.8 and Tacrolimus was reduced to 3mg 2X day. I have never had to take any medications prior to my dx. I did take Celebrex PRN for arthritis briefly. My current side effects, depression, upset stomach, restlessness, insomnia. I can’t seem to find a lot of information about MCD. Do you know if it will go into remission?

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