1. < Transplants

Everolimus and proteinuria

Posted by caretakermom @caretakermom, Jan 5, 2023

Hi everyone,

For anyone taking immunosuppressant drugs for transplant.
Is anyone taking Everolimus and getting proteinuria as a side effect? What did your provider do to treat it? Did they switch to a different medication from Everolimus? Thank you in advnace and looking forward to your response!

Interested in more discussions like this? Go to the Transplants Support Group.

babyariz | @babyariz | Jan 26 5:06pm

Hi @hello1234 :-),
I'm 2 years post kidney transplant this Jan. 28, 2025 . Regarding the Medicare after 3 years of post transplant. You're using now your employee insurance?
After annual visit for 3 years how often Mayo Clinic contacted you?
By the way I got detected of CMV today as my annual labs. Worried and stress me out with the result. I just emailed the Mayo Clinic Nurse and waiting for them to respond this Monday.
Hope you can give any advice. Thank you so much.

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1 reply
hello1234 | @hello1234 | Jan 27 5:58am
In reply to @babyariz "Hi @hello1234 :-), I'm 2 years post kidney transplant this Jan. 28, 2025 . Regarding the..." + (show)
@babyariz

Hi @hello1234 :-),
I'm 2 years post kidney transplant this Jan. 28, 2025 . Regarding the Medicare after 3 years of post transplant. You're using now your employee insurance?
After annual visit for 3 years how often Mayo Clinic contacted you?
By the way I got detected of CMV today as my annual labs. Worried and stress me out with the result. I just emailed the Mayo Clinic Nurse and waiting for them to respond this Monday.
Hope you can give any advice. Thank you so much.

Jump to this post

Hi @babyariz 😊
It is very nice to meet you and Congratulations on your 2nd kidney transplant anniversary!
What immine suppression meds and dosage are you currently taking? Normally, developing one of the opportunistic infections like CMV or BK means you may be slightly over-suppressed. When I developed CMV, I was put on Valcyte for several weeks and my Mycophenolate dosage was reduced. It worked beautifully.
Please keep us posted on what your Mayo transplant coordinator and doctor recommends today.
I look forward to hearing from you!

REPLY
hello1234 | @hello1234 | Jan 30 6:53am

Hi @babyariz 😊
Checking in....Did you have a chance to speak with your transplant coordinator regarding your positive CMV result?

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babyariz | @babyariz | Jan 30 10:56am

Hi @hello1234
Thank you for checking on me, I talked to my local nephrologist and she the Mayo Az, she just reduced my cellcelpt from 750mg to 500mg Tuesday still 2x a day and will repeat bloodworks , hopefully the result will be negative 🙏🙏. I give you update next week.. Have a great rest
Of your day!

REPLY
1 reply
hello1234 | @hello1234 | Jan 30 12:39pm
In reply to @babyariz "Hi @hello1234 Thank you for checking on me, I talked to my local nephrologist and she..." + (show)
@babyariz

Hi @hello1234
Thank you for checking on me, I talked to my local nephrologist and she the Mayo Az, she just reduced my cellcelpt from 750mg to 500mg Tuesday still 2x a day and will repeat bloodworks , hopefully the result will be negative 🙏🙏. I give you update next week.. Have a great rest
Of your day!

Jump to this post

Excellent update @babyariz ❤️
Yes, please keep us posted on your next labs. The reduction of Cellcept should do the trick. If not, they always have Valcyte to knock CMV out if needed!

REPLY
hello1234 | @hello1234 | Feb 1 1:43pm

Hi @babyariz 😊
I just received my lab results and my CMV was positive too. It's listed at < 200. Did your nephrologist just reduce your Cellcept or are you also taking Valcyte for the CMV? Was your viral load also < 200?
Thanks for your help. (I haven't been positive with CMV in 3 years)

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 8 2:36pm

@hello1234, oh that must've been a real gut punch to be CMV positive after 3 years of negative. What are next steps for you?

@babyariz, any update? How are you doing?

REPLY
1 reply
hello1234 | @hello1234 | Feb 8 7:48pm
In reply to @colleenyoung "@hello1234, oh that must've been a real gut punch to be CMV positive after 3 years..." + (show)
@colleenyoung

@hello1234, oh that must've been a real gut punch to be CMV positive after 3 years of negative. What are next steps for you?

@babyariz, any update? How are you doing?

Jump to this post

Hi @colleenyoung 😊
It's so great to hear from you! Thank you for checking in. Matter of fact, your timing is impeccable! I just received a notice from my local lab that my CMV viral load is now "Negative"!! When I spoke with my transplant coordinator, he suggested that I retest before we discussed any treatment plans. I am so excited to report that the test is now Negative. It's a huge relief.
Now I can relax and enjoy the Philadelphia Eagles play the Kansas City Chiefs in the Super Bowl tomorrow without thinking about CMV!

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 8 8:24pm
In reply to @hello1234 "Hi @colleenyoung 😊 It's so great to hear from you! Thank you for checking in. Matter..." + (show)
@hello1234

Hi @colleenyoung 😊
It's so great to hear from you! Thank you for checking in. Matter of fact, your timing is impeccable! I just received a notice from my local lab that my CMV viral load is now "Negative"!! When I spoke with my transplant coordinator, he suggested that I retest before we discussed any treatment plans. I am so excited to report that the test is now Negative. It's a huge relief.
Now I can relax and enjoy the Philadelphia Eagles play the Kansas City Chiefs in the Super Bowl tomorrow without thinking about CMV!

Jump to this post

Bravo for the second lab test to be certain!!!

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