Hmmm..could it be WG after all?

[BookNut]

I just went through some medical tests I had done in the spring, plus I have finally got to see my CT results from Cleveland Clinic. The CT scan shows a small granuloma in my left lobe. Will have to see what my doctors say at my upcoming appointments.

The other test was from Lifeline Screening....something my hubby insists on paying for us to do every few years. It seems repetitive of tests I have at other times that insurance covers, but it makes him happy to do the tests, so I go along with it. Anyway, I was so sick when the last results came, that I did not read it thoroughly. I looked it over the other day and it seems that I have a few readings involving the kidneys that indicate a problem. The "whole blood creatinine creatine" is 1.17 which they say is considered abnormal and higher than normal. That does not make sense to me since they also say the range for women is 1.11-3.49. So I am not sure that is an accurate report. They also report an eGFR of 46, which according to them is low and "indicates possible Chronic Kidney Disease at stage 3 or worse."

I have no kidney problem symptoms. Everything is respiratory. Am not going to get too worried about it till I see my doctors again. When I went for the screening I was not feeling well at all, and might have been on prednisone. Who knows how that might have affected the test.

But...it makes me wonder.....

[Pete]

Don't know how to respond to this news. I know you want a definitive diagnosis, but this one??? At any rate, hope they figure it out soon.

[mrtmeo]

I just went through some medical tests I had done in the spring, plus I have finally got to see my CT results from Cleveland Clinic. The CT scan shows a small granuloma in my left lobe. Will have to see what my doctors say at my upcoming appointments.

The other test was from Lifeline Screening....something my hubby insists on paying for us to do every few years. It seems repetitive of tests I have at other times that insurance covers, but it makes him happy to do the tests, so I go along with it. Anyway, I was so sick when the last results came, that I did not read it thoroughly. I looked it over the other day and it seems that I have a few readings involving the kidneys that indicate a problem. The "whole blood creatinine creatine" is 1.17 which they say is considered abnormal and higher than normal. That does not make sense to me since they also say the range for women is 1.11-3.49. So I am not sure that is an accurate report. They also report an eGFR of 46, which according to them is low and "indicates possible Chronic Kidney Disease at stage 3 or worse."

I have no kidney problem symptoms. Everything is respiratory. Am not going to get too worried about it till I see my doctors again. When I went for the screening I was not feeling well at all, and might have been on prednisone. Who knows how that might have affected the test.

But...it makes me wonder.....

Hi Jacquie,
The normal range for serum creatinine is .6 - 1.3 mg/dL.
However, being at the top end can mean that your kidneys are involved with something.
A GFR >60 is considered normal.

Have you had an ANCA test done?
It is important to get a diagnosis if it is vasculitis because kidney function fails fast and you never realize it until it is too late.
Did they do a urinalysis?
I don't know if they can do a kidney biopsy or not when your function is not that bad, but you could ask.

I wish I would have known about the kidney involvement in my mom's early days because if she would have been treated correctly, then she could have saved her kidney function.

Don't sit on it because the quicker u can get treatment (if it is vasculitis) the better your remission.
Getting treatment may help your lungs too.

[BookNut]

Don't know how to respond to this news. I know you want a definitive diagnosis, but this one??? At any rate, hope they figure it out soon.

Well - I just want a correct diagnosis AND an action plan that will work. Up till now, the diagnosis has been chronic asthma which does not respond well to asthma meds, resulting in my being incapacitated for about half my life (a rather conservative estimate at this point). So - am just hoping for something that will control what is going on and let me have some quality of life. Constant Prednisone has made me pre-diabetic and is killing my bones. So - hoping that our next plan - Xolair injections - will get me off the pred merry-go-round. I sure will not be happy if it is WG - because that involves even more of what has been referred to as "the devil's tic-tacs" on my asthma Facebook group!

[BookNut]

Hi Jacquie,
The normal range for serum creatinine is .6 - 1.3 mg/dL.
However, being at the top end can mean that your kidneys are involved with something.
A GFR >60 is considered normal.

Have you had an ANCA test done?
It is important to get a diagnosis if it is vasculitis because kidney function fails fast and you never realize it until it is too late.
Did they do a urinalysis?
I don't know if they can do a kidney biopsy or not when your function is not that bad, but you could ask.

I wish I would have known about the kidney involvement in my mom's early days because if she would have been treated correctly, then she could have saved her kidney function.

Don't sit on it because the quicker u can get treatment (if it is vasculitis) the better your remission.
Getting treatment may help your lungs too.

Thanks!! I have had ANCA tests done in the past. They have been slightly elevated and were the basis of a diagnosis about 2 years ago of "mild wagerers". I started with my current plumy and ENT for second and third opinions. Both ruled the diagnosis out.

Yes - I will be checking this out ASAP, without a doubt. Feeling stupid that I overlooked it before. My eGFR has been a bit high in the past. Maybe it is time for another ANCA test. But, I am on prednisone AGAIN - the 9th time now in 14 months. Not sure how that might affect any of these tests.

Thanks for always being so helpful with ideas.

[mishb]

Jacquie, when you first joined us we were sorry that you had Wegener's.

When we found out that you didn't have Wegener's we were happy and even happier when you decided to become an honorary weggie.

NOW - this new information could take away your hononary status, and this makes me unhappy again
Wegener's is not a condition that I would want anyone to get and I hope that it is wrong.

I do know that there are other conditions that cause granulomas in the lungs, so these also cannot be ruled out, unless they already have

[BookNut]

Jacquie, when you first joined us we were sorry that you had Wegener's.

When we found out that you didn't have Wegener's we were happy and even happier when you decided to become an honorary weggie.

NOW - this new information could take away your hononary status, and this makes me unhappy again
Wegener's is not a condition that I would want anyone to get and I hope that it is wrong.

I do know that there are other conditions that cause granulomas in the lungs, so these also cannot be ruled out, unless they already have

Thanks Michelle! We will see. Between the whole Cleveland Clinic debacle and other pressures in my life, I think my brain is not functioning on all its cylinders. I JUST remembered....The CT scan also showed something on my kidneys which were most likely cysts. So...that might be what is causing the wacky readings. Will definitely have it checked out ASAP with my primary care physician!!

[mrtmeo]

Thanks!! I have had ANCA tests done in the past. They have been slightly elevated and were the basis of a diagnosis about 2 years ago of "mild wagerers". I started with my current plumy and ENT for second and third opinions. Both ruled the diagnosis out.

Yes - I will be checking this out ASAP, without a doubt. Feeling stupid that I overlooked it before. My eGFR has been a bit high in the past. Maybe it is time for another ANCA test. But, I am on prednisone AGAIN - the 9th time now in 14 months. Not sure how that might affect any of these tests.

Thanks for always being so helpful with ideas.

My mom's gfr did not change when she was on prednisone a couple times last year, but that doesn't mean it can't effect it.
You might want to look into a nephrologist familiar with weg's for a diagnoses and to determine what is really going on with your kidneys.
You can email the vasculitis foundation for a nephrologist familiar with wegs.
Contact Us

[BookNut]

My mom's gfr did not change when she was on prednisone a couple times last year, but that doesn't mean it can't effect it.
You might want to look into a nephrologist familiar with weg's for a diagnoses and to determine what is really going on with your kidneys.
You can email the vasculitis foundation for a nephrologist familiar with wegs.
Contact Us

Thanks so much. I will follow up as soon as I can, and will also look for a good nephrologist. What's one more specialist in my life?! My wonderful PCP just shakes her head when she sees me. She and my asthma specialist are the only ones who ever see me when i am bad. for some fluky reason, I am always at my best during my regular pulmy and ENT apointments. Anyway, the last time i saw my PCP, she shook her head and said, "All these doctors and NONE of us is doing you a darn bit of good!".

[mrtmeo]

Thanks Michelle! We will see. Between the whole Cleveland Clinic debacle and other pressures in my life, I think my brain is not functioning on all its cylinders. I JUST remembered....The CT scan also showed something on my kidneys which were most likely cysts. So...that might be what is causing the wacky readings. Will definitely have it checked out ASAP with my primary care physician!!

Jacquie,
cysts on the kidneys is very common.
My mom has had cysts on her kidneys for years with very good kidney function, but either way, I hope it is not weg's.