1. < Kidney & Bladder

Has anyone had their GFR drop 20 points in less than year?

Posted by like2dance2 @like2dance2, Sep 14, 2024

In January 2024 my GFR went from 53 to 43. It dropped another 11 points between May and August. My Albumin/ Creatine Ratio is 1500. My nephrologist seems totally unconcerned. I am scared. I also have MGUS. Does anyone have these kind of numbers? What did your Doctor say?

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like2dance2 | @like2dance2 | 3 days ago
In reply to @ccc56 "After the kidney byopsia,I had a diagnostic of Amyloidosis Al, and my gfr go down to..." + (show)
@ccc56

After the kidney byopsia,I had a diagnostic of Amyloidosis Al, and my gfr go down to 8.I don't have any treatment and I am scared.

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Hopefully, you can get treatment quickly. My treatment has improved the AL Almyloidosis but my gfr has not recovered at all yet. It is gfr 16. Where are you located?

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ccc56 | @ccc56 | 2 days ago
In reply to @like2dance2 "Hopefully, you can get treatment quickly. My treatment has improved the AL Almyloidosis but my gfr..." + (show)
@like2dance2

Hopefully, you can get treatment quickly. My treatment has improved the AL Almyloidosis but my gfr has not recovered at all yet. It is gfr 16. Where are you located?

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I live in Central Florida.
What treatment do you have for Amyloidosis?
I'm waiting for the results of some blood test to determine what's is the cause of the Amyloidosis.

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like2dance2 | @like2dance2 | 1 day ago
In reply to @ccc56 "I live in Central Florida. What treatment do you have for Amyloidosis? I'm waiting for the..." + (show)
@ccc56

I live in Central Florida.
What treatment do you have for Amyloidosis?
I'm waiting for the results of some blood test to determine what's is the cause of the Amyloidosis.

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I am in Florida as well, Lakeland, and my treatment is in Tampa. The treatment plan is the the andromeda trail which is standard for Al Amyloidosis. Mine is Kappa restricted. Be your on advocate and get treatment asap.

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ccc56 | @ccc56 | 1 day ago

Thank you for your recommendation,I feel that I don't have time to go from one doctor to other with out an answer and a treatment.Could you,please, give me the name of the doctor or the office address in Tampa. I am in Ocala,and here there isn't any doctor who treat Amyloidosis.

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like2dance2 | @like2dance2 | 1 day ago
In reply to @ccc56 "Thank you for your recommendation,I feel that I don't have time to go from one doctor..." + (show)
@ccc56

Thank you for your recommendation,I feel that I don't have time to go from one doctor to other with out an answer and a treatment.Could you,please, give me the name of the doctor or the office address in Tampa. I am in Ocala,and here there isn't any doctor who treat Amyloidosis.

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I went to Moffitt, Dr. Grajales Cruz. Oncolocy hemotology. They are in Tampa. Of course, there is Mayo which would be great but they are in Jacksonville. I tried there first but needed sooner. I do think Mayo has a clinical trail for a new promising drug. Who read your Kidney biopsy?

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ccc56 | @ccc56 | 1 day ago

I have seen a nephrologist,Nicoleta,here in Ocala.Last week I went to an oncologist/hematologist,I had some blood test and waiting for the results.
I call my insurance,Humana Medicare asking for Mayo ,but they aren't in network.
The biggest issue is the number in my kidneys down fron19 to 8 in 3 months.

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like2dance2 | @like2dance2 | 5 hours ago

Did you ask Humana who they recommended you go to? What about Moffitt?

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