Kidney involvement

[maria garcia]

I would like to know those who have had kidney involvement how did you realize it in the beginning? And what do you check for now?

[mrtmeo]

My mom has kidney involvement which they found when her hemoglobin was 5.6.
To test for active vasculitis on the kidneys, you use a Hemostix or a urine dip stick that can tell you if there is blood in the urine.
The other test is a biopsy to see what form of attack is happening to the kidneys.
If you don't know how to tell if you have lower kidney function, it will show up on a CMP (Comprehensive Metabolic Panel).
The creatinine will be high and the eGFR correlates always with the creatinine level.
A urinalysis can tell you if you have blood and/or protein in the urine and if there are any rbc casts.

[maria garcia]

Thank you. Only a uranalysis was done as a normal routine check and all of the above you wrote are positive. Monday we have the appointment with her rhemy. I just have the bad habit of getting the labs myself , now im freaking out the whole weekend. Im sure there will be more test. Im already planning to take my daughter to a nephrologist after those labs today:mad1:

[mrtmeo]

Thank you. Only a uranalysis was done as a normal routine check and all of the above you wrote are positive. Monday we have the appointment with her rhemy. I just have the bad habit of getting the labs myself , now im freaking out the whole weekend. Im sure there will be more test. Im already planning to take my daughter to a nephrologist after those labs today:mad1:

Keep us posted on how things go and don't wait on anything.
The quicker you treat the disease, the quicker the kidney function can come back.

[drz]

I had blood in my urine from routine urinalysis and Wegs was confirmed later by kidney biopsy. Declining kidney function was monitored by regular on going lab work. I use dip sticks to check urine between regular monthly labs as Specks recommended. My nephrologist has also altered my blood pressure meds and ran extra tests to assess kidney function which has been stable for past couple years.

[Rose]

I had no symptoms whatsoever. When admitted to hospital with all my other symptoms blood and protein was found in my urine. A blood test for kidney function found my kidneys were only functioning at around 40%. A kidney biopsy confirmed Wg and so I got my diagnosis and the cause of all my other symptoms, sinus, hearing , painful swollen joints. daily spikes in temperature etc

With treatment my kidney function improved to at its best 60GFR but averages around 58. There has been no protein in my urine since my initial treatment. I do monitor it myself with strips that I have at home. I have blood tests every 2 months but I do know that kidney function can deteriorate very quickly with few symptoms so doing the twice weekly test at home reassures me all is well.

Rose

[gilders]

It is unlikely to have any symptoms until severe damage has done. By severe I would estimate that you would'nt feel symptoms until kidneys were less than 20% efficient. Having said that my nephrologist has said that people are effected differently. He has patients who have almost no kidney function who work full time and don't "feel" anything is wrong and others who have fairly good function who struggle with walking a few feet. Obviously once you start adding on more illnesses such as WG, chances are it will have a cumulative effect and even slight deterioration in kidney function can have a large increase in weakness, tiredness, etc.
Other symptoms include itching, breathlessness, loss of appetite with nausea and vomiting and fluid retention.

I always suffer from tiredness, weakness and breathlessness.
Fluid retention has gotten bad this last year, so was put on diuretics. I've since had to stop the diuretics (3 days ago) as my renal function has deteriorated too much.
I don't think I've had any itching beyond whats "normal"

My wife says "I know you're REALLY ill when you stop eating" Although this is said half in joke, it is very true. The last thing that stops with me is my appetite. My current kidney function is as low as it's ever been since I stopped dialysis about 19 years ago. But I'm still managing to eat more than I should:ohmy:. I think the prednisolone might have something to do with that though.

[kaysee]

I had many symptoms over a two year period which seemed unrelated. One was just not feeling good, no appetite, tired all the time. Having had water retention issues in the past and frequent urination at night my Dr checked for blood in the urine and found blood. He then did a 24 hour urine test and found I only had 25% function. I was sent to a kidney Dr who did a biopsy and found I had WG. This explained the crazy symptoms I had over the two year period before diagnosis. Right about the same time my rhuemy had done a whole bunch of blood work and I was C-ANCA positive. He is the one who actually made the diagnosis just a few days before the kidney biopsy confirmed it.

I am doing my second round of rituxan now. One more treatment to go next Monday. I really don't feel much better - still tired, short of breath, don't feel like doing anything. Appetite is OK. Dr. is reducing the pred and I am getting worried that WG is still active.

I would like to monitor for blood in my urine in between blood tests. Do I have to have an Px to get the strips or can I buy them over the counter. What exactly do I ask for?

[mrtmeo]

I had many symptoms over a two year period which seemed unrelated. One was just not feeling good, no appetite, tired all the time. Having had water retention issues in the past and frequent urination at night my Dr checked for blood in the urine and found blood. He then did a 24 hour urine test and found I only had 25% function. I was sent to a kidney Dr who did a biopsy and found I had WG. This explained the crazy symptoms I had over the two year period before diagnosis. Right about the same time my rhuemy had done a whole bunch of blood work and I was C-ANCA positive. He is the one who actually made the diagnosis just a few days before the kidney biopsy confirmed it.

I am doing my second round of rituxan now. One more treatment to go next Monday. I really don't feel much better - still tired, short of breath, don't feel like doing anything. Appetite is OK. Dr. is reducing the pred and I am getting worried that WG is still active.

I would like to monitor for blood in my urine in between blood tests. Do I have to have an Px to get the strips or can I buy them over the counter. What exactly do I ask for?

Hi Karen,
I buy these because they test both blood and protein in the urine and you don't need a prescription.

Urinalysis Reagent Strips 10 (http://www.meditests.com/urinalysis-strip.html?utm_source=googlepepla&utm_medium=adwords&id=18283950120&gclid=CNil0qqdt8ECFYxDMgodJzoAJA)

[kaysee]

Thanks Blake, I will get some of these strips to check in between blood tests. It will help ease my mind a little to know I can check to see if I do or do not have blood in the urine.

[Jaha]

Karen,
Wishing all the best for improvement of kidney function with your tx's.

[Jaha]

Maria Garcia,
Wishing all the best for your daughter, and hoping you get better news soon.

[mishb]

Thank you. Only a uranalysis was done as a normal routine check and all of the above you wrote are positive. Monday we have the appointment with her rhemy. I just have the bad habit of getting the labs myself , now im freaking out the whole weekend. Im sure there will be more test. Im already planning to take my daughter to a nephrologist after those labs today:mad1:

Hey lovely,

Just wondering how the Rheumy appointment went.
It's now a week later - hopefully things have improved

[KathyB]

I'm a bit late with a comment -- hope your appointment went well and you've been able to find answers to your questions! My major involvements are kidneys and lungs. Before dx in 2011, I had fatigue, lack of appetite and focus, and dark urine. My general doctor started with the basic urine and blood tests. Urinalysis found a lot of blood in my urine and blood work indicated high creatinine (3.9). I went to our local hospital and was diagnosed with kidney failure. They administered fluids and worked the level down to 3.1 and discharged me 4 days later. Within 5 days, I went to a large hospital in Richmond, VA with blood in my lungs and nose. My creatinine was up to 4.7! After a kidney biopsy, I was officially diagnosed with WG. My kidney function has stabilized (around 1.6) although my GFR is around 33-35 when I'm tested every 3 months. My IGg and IGm levels (antibodies) are also extremely low. I've not used the urine test strips, but I would consider them for sure. I see my nephrologist once a year unless there's a problem. My rheumy is the "go to" doc and I see him every 3 months. Since all my physicians are at VCU Medical Center in Richmond, they consult regularly!

[mrtmeo]

I'm a bit late with a comment -- hope your appointment went well and you've been able to find answers to your questions! My major involvements are kidneys and lungs. Before dx in 2011, I had fatigue, lack of appetite and focus, and dark urine. My general doctor started with the basic urine and blood tests. Urinalysis found a lot of blood in my urine and blood work indicated high creatinine (3.9). I went to our local hospital and was diagnosed with kidney failure. They administered fluids and worked the level down to 3.1 and discharged me 4 days later. Within 5 days, I went to a large hospital in Richmond, VA with blood in my lungs and nose. My creatinine was up to 4.7! After a kidney biopsy, I was officially diagnosed with WG. My kidney function has stabilized (around 1.6) although my GFR is around 33-35 when I'm tested every 3 months. My IGg and IGm levels (antibodies) are also extremely low. I've not used the urine test strips, but I would consider them for sure. I see my nephrologist once a year unless there's a problem. My rheumy is the "go to" doc and I see him every 3 months. Since all my physicians are at VCU Medical Center in Richmond, they consult regularly!

Hi Kathyb,
That is an impressive improvement in kidney function.
My mom's creatinine was 3.3 and has only improved to 1.8 at its best and is hovering on 2-2.2.
What treatments did they give you and how long did it take for your kidney function to improve to that level?

[KathyB]

Hi Kathyb,
That is an impressive improvement in kidney function.
My mom's creatinine was 3.3 and has only improved to 1.8 at its best and is hovering on 2-2.2.
What treatments did they give you and how long did it take for your kidney function to improve to that level?

I was diagnosed quickly and the meds kicked in and worked! Rituxan treatments were lifesavers along with prednisone. I'm still on 5 mg prednisone as my maintenance drug. No Rituxan since April 2012 due to tremendously low IG levels indicating a highly-compromised immune system. If I flare, we'll need to do it again. My left kidney is polysistic and almost another 1/2 size larger than my right kidney. It has limited function. Due to the disease, my right kidney operates at about 50% -- but together they do their job! I'd say it's been steady progress on kidney function since diagnosis -- one year of fluctuation and danger but since then it's been pretty steady. I'm sure I haven't gone over 2.0 in the past two years or so. Feeling very blessed most days!!

[mishb]

Kathy it's great to see you and I'm glad things are going good for you.
I hope retirement is treating you well

[mrtmeo]

I'm a bit late with a comment -- hope your appointment went well and you've been able to find answers to your questions! My major involvements are kidneys and lungs. Before dx in 2011, I had fatigue, lack of appetite and focus, and dark urine. My general doctor started with the basic urine and blood tests. Urinalysis found a lot of blood in my urine and blood work indicated high creatinine (3.9). I went to our local hospital and was diagnosed with kidney failure. They administered fluids and worked the level down to 3.1 and discharged me 4 days later. Within 5 days, I went to a large hospital in Richmond, VA with blood in my lungs and nose. My creatinine was up to 4.7! After a kidney biopsy, I was officially diagnosed with WG. My kidney function has stabilized (around 1.6) although my GFR is around 33-35 when I'm tested every 3 months. My IGg and IGm levels (antibodies) are also extremely low. I've not used the urine test strips, but I would consider them for sure. I see my nephrologist once a year unless there's a problem. My rheumy is the "go to" doc and I see him every 3 months. Since all my physicians are at VCU Medical Center in Richmond, they consult regularly!

How long did it take for the rtx treatment to bring your creatinine to 1.6?

[daystarr8]

I had kidney involvement in 1979. Apparently my kidneys were very sick and lots of blood in the urine. They are doing just fine today. I have had healthy kidneys since treatment was started. I need to check my kidneys more often. Thanks for all the info on the dip sticks from everyone


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