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codered032 (@codered032)

When is it time to change care to a Gerontologist?

Aging Well | Last Active: Jun 11 9:28pm | Replies (26)

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@codered032

Thank you for jumping in! My nephrologists has not provided much education. I think I am his only patient with MCD. His patients are mostly ESRD and dialysis. Also the insurance companies only allow 15min per total visit. I think my dr is capable but lack knowledge about my dx.most of my understanding has from my own research and being actively involved. I have to ask for routine Tacrolimus levels and when I ask specific questions, his answers are vague. I have learned that all generic Tacrolimus are not equal. There is one manufacturer that I really cannot tolerate but the pharmacist can only provide me with which ever one is the cheapest. I am at the mercy of the drug company 😢! I have requested a file/medical review from Mayo Clinic. That is scheduled 11/02/21. Wish me luck!

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Replies to "Thank you for jumping in! My nephrologists has not provided much education. I think I am..."

It’s great you’re getting a medical review from Mayo! Just have everything ready and have a list of questions. I hope you can get some more targeted answers.
You’re so right, not all generics are the same. The binders and fillers can make enough difference to mess with us.
I’m so sorry you’re not having the follow through with your nephrologist with education on your disease. Tacrolimus is used for MCD if steroids don’t work. But if the level in your blood is too high it can also reduce the amount of blood flow through your kidney. This is all from personal experience. 😉. So it’s really vital that your doctor knows what a minimally supported trough number should be for you. You’re not a transplant patient so the amount in your system wouldn’t be at a organ rejection level. Just enough to reduce the proteinuria associated with your disease. Good questions for the Mayo team.
https://nephcure.org/livingwithkidneydisease/treatment-options/tacrolimus-prograf/
What are your kidney function numbers like? Bun, GFR/Creatinine?

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