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 :sad:
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 :unsure:

[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 :sad:
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 :unsure:

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 (http://www.vasculitisfoundation.org/about/contact/)

[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 (http://www.vasculitisfoundation.org/about/contact/)

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.

[annekat]

Oh, Jacquie! I don't know what to say. Most of what people are talking about here is over my head... I may sound like I know a lot because I talk a lot, but there is a lot of terminology and stuff that just makes my brain clam up. I don't have time to look at a bunch of studies online like mrmteo. (Mrmteo, did I catch that your name is Blake? Alysia is very good at finding these things out. Or did I dream that?) Anyway, Jacquie, I concur that it might be better for you to know you have Wegs than to go on and on and on never figuring out what is wrong and continuing to have all that trouble breathing and be constantly on pred. If they decide you have WG, maybe they can put you on a heavy immunosuppressant and knock it out fast so you can get off the pred! In a perfect world, I guess. I don't remember what they had you on when you actually had a dx of "mild" WG. I'm guessing it was MTX or maybe Imuran. Did it do anything for you at all? I know you are getting overwhelmed with questions and ideas.... I'm really just ruminating here and it's 11:20 where you live... I just wanted to touch base and say you are on my mind and will be as you go through the process of digesting this new twist in the road! LOVE YA.

[BookNut]

Well...right at this moment it is complete speculation on my part. I have an appt with my PCP tomorrow to go over the lab tests and see what she suggests as a next step. Today I had a great day. Went out to lunch with friends and went grocery shopping. Came home and put away groceries, finished up the laundry and made a quick dinner. I haven't been able to do that much in ages. And those days that I do, it is by powering through the shortness of breath and taking frequent rests. So...it felt so good to feel "normal". This is my 6th day on my prednisone taper...hence the energy and clearer breathing. My allergist is away, but before she left she made me promise to email her as soon as I was down to 10 mg, because she wants to change up the taper a bit..

Back when I had the mild wegs diagnosis, the rheumatologist wanted me to finish up the pred and start on imuran. That is when I sought out a referral to a pulmonologist and a new ENT...both of whom said it was not wegs. Depending on what my PCP and my allergist say....I will have to figure out who to go to next. My husband does not trust that rheumatologist I had, so I want to find someone else. Bob is a good guy and likes most people....but if he takes it in his head to be opposed to someone...well...it would just not be comfortable.

But again...keep in mind that all of this is based on complete speculation on my part. We will see where it goes.....

And I SO appreciate your input. The more eyes and minds on a problem, the better!! Thanks so much for being my friend!!

[mishb]

Best of wishes and luck for tomorrow's appointment Jacquie.

I so hope that it isn't WG as you are speculating - but as Anne says, it's better to at least have a diagnosis even if it is wegs.
.............and if it is wegs. at least you know more about it than most people recently diagnosed.

Will be thinking of you

[mrtmeo]

Oh, Jacquie! I don't know what to say. Most of what people are talking about here is over my head... I may sound like I know a lot because I talk a lot, but there is a lot of terminology and stuff that just makes my brain clam up. I don't have time to look at a bunch of studies online like mrmteo. (Mrmteo, did I catch that your name is Blake? Alysia is very good at finding these things out. Or did I dream that?) Anyway, Jacquie, I concur that it might be better for you to know you have Wegs than to go on and on and on never figuring out what is wrong and continuing to have all that trouble breathing and be constantly on pred. If they decide you have WG, maybe they can put you on a heavy immunosuppressant and knock it out fast so you can get off the pred! In a perfect world, I guess. I don't remember what they had you on when you actually had a dx of "mild" WG. I'm guessing it was MTX or maybe Imuran. Did it do anything for you at all? I know you are getting overwhelmed with questions and ideas.... I'm really just ruminating here and it's 11:20 where you live... I just wanted to touch base and say you are on my mind and will be as you go through the process of digesting this new twist in the road! LOVE YA.

Hi Anne,
Yes, my name is Blake.

Jacquie, I agree with Anne.
Don't sit on this.
The quicker you get a dx, the quicker they can treat it.
If you get an ANCA test, ask if they can do an MPO and PR3 with it.

[MikeG-2012]

Keep in mind that ANCA negative does not necessarily definitively rule out wegs. Mine has been negative since about two months after diagnosis, and I've had a nasty flare up last year.

[annekat]

Keep in mind that ANCA negative does not necessarily definitively rule out wegs. Mine has been negative since about two months after diagnosis, and I've had a nasty flare up last year. I don't even worry or ask anyone about my ANCA because I was so sick at dx despite my ANCA being so low that my non-specialist doc didn't think I had Wegs. I had Wegs, for sure.

[annekat]

Hi Anne,
Yes, my name is Blake.

Nice to meet you, Blake! Nice name, IMO.

[mrtmeo]

Nice to meet you, Blake! Nice name, IMO.
It's an honor and a pleasure to meet you and everyone else here!

[BookNut]

I think my ANCA was slightly high - but would have to blow the dust off the archived med reports.:rolleyes1:

I had an hour long appt with my PCP where we looked over my records together, and talked about a gagillion things. It was a good meeting. the plan is for me to take some additional lab tests with some time between them, and to keep on top of it regularly for awhile, just in case. She looked at my last readings and asked some questions about meds I was taking back in June, what my health was at that time, and what the pre-test instructions were. I was told to be fasting for the tests and to drink only enough liquid to take necessary pills in the morning. By the time the tests were done, I probably was at least 12 hours with very minimal water. She said that the tests are calibrated for a certain height and weight man or woman. In my case a 5'10" woman weighing 150 pounds. Definitely NOT me. Hence, she suspects that I was probably dehydrated. The upcoming lab tests should help with that. I have one tomorrow, and I plan to drink up a storm between now and then!

The granuloma was described in the CT narrative as tiny, and (surprise! surprise!) Cleveland Clinic has not seen fit to release the actual CT scan yet....just the narrative. In her opinion, it is something to be watched, but is very typical of the inflammatory process which is at the root of my problems. As a for instance, she talked about how tuberculosis can form granulomas which is the body's way of protecting itself from whatever is attacking it.

Next we got into more interesting conversation. She looked at my IgG readings which are on the low side - but overall within range. However - there are subclasses of IgG - and I have been consistently low on IgG subclass 2. I myself have been very interested in that as the symptoms so closely match my issues. But none of my asthma specialists seem to think it is significant. The standard treatment for this kind of deficiency is IGIV - immuglobulin via IV. It is aimed at BOOSTING my immune system - not suppressing it. She was interested that my asthma specialist wants me to do Xolair which is more allergy related and is actually an immune suppressant. S0 - bottom line - she and the asthma/allergy specialist are going to have a discussion. But - unless there is something big that neither my PCP or I are aware of - both of us are inclined for me to try the IGIV first. If that doesn't work - then try the Xolair. And then, if all else fails, I will have to resign myself to long term (hopefully low does) prednisone.

I feel better about everything. Will definitely keep an eye on the kidney thing and make sure we check frequently. But my own gut feeling has been that my immune problem is more likely an under-active immune system.

So - for now - I hope to remain, as always, an "honorary weggie" friend to all of you!! Meanwhile, I will enjoy my prednisone-supported feeling or relative good health. Looks like I will stay on a low dose of it at least till the two doctors have their little confab.:w00t:

[mrtmeo]

Keep us updated if you get the IVIG immunoglobulin injections.