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Thread: Kidney Involvement

  1. #11
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    Default Re: Kidney Involvement

    After 7 years of remission while being treated at a vasculitis center I had a relapse. Out of nowhere I had sudden kidney failure (first time for renal involvement) and was in hospital for some time. There is only one nephrologist on staff at the vasculitis center and she isn't taking new patients (I guess I'm new after 7 years?). So they shoved me off on a nephrology fellow in the regular nephrology department who has no specialty in vasculitis.
    Is this normal for GPA treatment when there is renal involvement? Has anyone else had this experience? I don't even know who is on staff at the vasculitis center now, all three doctors that I've seen in the past (including the director) have left.
    I feel abandoned and don't know where to get help. My kidneys have improved over 6 months from stage 5 to stage 3 kidney disease so maybe I shouldn't be complaining.
    I guess I'm just looking for any information and maybe hope.
    Does anyone know a good nephrologist that specializes in GPA in or near Maryland? Don't say Johns Hopkins because that's where I'm currently being seen.

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    Default Re: Kidney Involvement

    Hi there,

    When I was diagnosed 5 years ago with GPA I was also diagnosed with kidney disease at the time was state 4, I am now at stage 3a. My nephrologist does not specialize in vasculitis but I feel is a very good doctor to maintain my kidney's. Unfortunately I am no in Maryland, but wanted to let you know that they do not have to specialize in in vasculitis just need to understand the disease. You may know this already but make sure you watch all medication you take and are prescribed for to make sure they do not impact your kidney's. Salt is another no no as well as watch how much protein you intake.

    Hope your kidney's keep improving.

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    Default Re: Kidney Involvement

    Thank you for your words of encouragement.
    I am happy to hear that your kidneys improved. I'm trying to remain hopeful.
    I'm on a very strict renal diet with 40g max protein daily and it has been a little bit of a challenge. Especially since my test results stopped improving and actually started getting worse since I started it.
    I think part of the problem is that when you look online for info about kidney disease, most of it is aimed at people who developed kidney disease slowly. GPA is different.
    It seems that with normal kidney disease people don't get improvement of their kidneys.
    I guess I'm just still trying to come to terms with this. It doesn't help that I had to hear a lot about my kidney's condition from the immunologist rather than my nephrologist. I see an immunologist because I evidently don't have any antibodies (except to Covid!). They don't know why. At first they thought it was a result of the plasmapheresis treatments I had in the hospital but that was 6 months ago so now they don't know. Anyway, my point is that the immunologist knows more about vasculitis that my nephrologist.
    Aaaahh! I can't seem to stop being negative.
    I am sorry.

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    Default Re: Kidney Involvement

    Hi @little sisiter
    I've documented quite a lot of my renal involvment on here, but it's probably a bit hard for someone to peice it all together, so I'll try to condense my many years of experience.

    Firstly everything @smileyurbs wrote I agree with. You don't need a renal specialist that is also a vasculitis specialist.
    28 years ago, when I was first diagnosed with WG, I was very close to death and my kidney function plumeted. I had to have dialysis and this, along with treatment for WG saved my kidneys. They soon began to recover and I only needed dialysis for a month or two.
    In brief, a sudden drop in kidney function can often be reversed with the correct treatment, whereas slow chronic decline in kidney function won't be reverseable.

    The very best way to look after your kidneys is prevention of relapse/flare of WG/GPA as this is what damages your kidneys. The next most important is keeping hydrated and keeping blood pressue in heathy range. Beyond that, little else matters.

    I was originally given a strict protein allownce, but in the UK, it was updated to allow you to eat a "normal" amount. This makes sense to me. Protein becomes creatinine when we digest it. Your kidney function level is based on creatinine blood levels. These become high in people with poor kidney function as your kidneys don't filter out the creatinine and it "leaks" back in to your blood. Therefore if you only eat a tiny amount of protein, there won't be much detected in your blood - not because your kidneys are working better on a low protein diet, but because there was none there in the first place. Eating huge amounts of protein obviously isn't recommended, but I wouldn't restrict myself too much, as lack of protein has it's own issues.

    Back to my condensed kidney journey. Each relapse/flare I had led to more permanent damage to my kidneys. After multiple relapses my kidney function stabilised at 18%. My nephrologist advised me that even without another relapse my kidneys would slowly lose their function (I was beyond the point of no return). This happened over many years and I had a transplant March 2019.

    As for you having no antibodies, I pressume you're not currently on massive doses of immunosuppressants? If so, that's the medication doing what it's supposed to (EDIT: even high doses shouldn't wipe out all your antibodies). Ideally you want the lowest dose of immunosuppression, that is still high enough to treat an autoimmune disease (e.g. vasculitis) or in my case enough to prevent transplant rejection. It's also possible that you have another condition that is causing your lack of antibodies. Sometimes, I believe, doctors will try and find out why an already diagnosed illness is causing these abnormal results (such as lack of antibodies) rather than entertaining the possiblity that the patient may have another condition. I have MANY conditions and I think most of the people on this forum have multiple conditions. You'll often hear the phrase "the gift/disease that keeps on giving" on this forum.

    Try not to worry too much about your kidneys. The one thing you do need to do with the nephrologist is to make them aware that your kidney function dropped rapidly, so you should have frequent creatinine blood tests even if you feel fine. Most people don't even know they have kidney problems until their function is below 15%, so don't worry about it, but don't leave it too long between blood tests.
    Diagnosed April 1995

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    Default Re: Kidney Involvement

    I found this info very useful. I have also wondered about the diet. I had been waiting for months for an appointment with a renal nutritionist and she was the one who put me on the very strict diet. And then my numbers worsened. Prior to that I had only been told to watch my potassium.
    Anyway, thank you for taking the time!

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    Default Re: Kidney Involvement

    Quote Originally Posted by little sister View Post
    I found this info very useful. I have also wondered about the diet. I had been waiting for months for an appointment with a renal nutritionist and she was the one who put me on the very strict diet. And then my numbers worsened. Prior to that I had only been told to watch my potassium.
    Anyway, thank you for taking the time!
    You're welcome.
    I actually forgot about the potassium. The reason being, my potassium levels never went to high, even just before my transplant, except for one time when I went to A&E with something unrelated. I had bloods taken and this time my potassium was high and I needed a drip. Don't know what was in the drip, but it stung and burnt awfully.
    Diagnosed April 1995

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    Default Re: Kidney Involvement

    Quote Originally Posted by gilders View Post
    In brief, a sudden drop in kidney function can often be reversed with the correct treatment, whereas slow chronic decline in kidney function won't be reverseable.

    The very best way to look after your kidneys is prevention of relapse/flare of WG/GPA as this is what damages your kidneys. The next most important is keeping hydrated and keeping blood pressue in heathy range. Beyond that, little else matters.

    [...]

    Back to my condensed kidney journey. Each relapse/flare I had led to more permanent damage to my kidneys. After multiple relapses my kidney function stabilised at 18%. My nephrologist advised me that even without another relapse my kidneys would slowly lose their function (I was beyond the point of no return). This happened over many years and I had a transplant March 2019.

    [...]

    Try not to worry too much about your kidneys. The one thing you do need to do with the nephrologist is to make them aware that your kidney function dropped rapidly, so you should have frequent creatinine blood tests even if you feel fine. Most people don't even know they have kidney problems until their function is below 15%, so don't worry about it, but don't leave it too long between blood tests.
    Gliders, thank you for this informative post! I'm curious as to what you would term a sudden decline verses a chronic one. I had acute kidney failure in 2005, was on dialysis for about a month, then kidneys bounced back to about 40% and have remained there (within about 5% each way) until September this year when I had my first flare. EGFR dropped to 32 (late September, just before start of treatment) to 26 (a couple of weeks ago) to 23 (this week). The hope is to get me into remission by January. I'm not sure if it's reasonable to hope for a bit of bounceback at this point, or whether it's just going to be a slower decline from here on in.
    Last edited by tmesis; 11-18-2022 at 08:52 AM.

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    Default Re: Kidney Involvement

    Hi tmesis,
    I couldn't give an actual figure of what decline would be counted as sudden vs chronic as there's quite a few variables, for example the cause of the decline could be severe damage to the kidney in an accident that results in the kidney being physically destroyed. The function would obviously decline quickly, but wouldn't recover.

    In our case, inflammation of the tiny blood vessels occurs in our kidneys when our disease is active. The kidneys are a filter and when these blood vessels swell, the filtration is very poor (which equates to poor kidney function). If this swelling is reversed quickly enough (we achieve remission) then the swelling will reduce and normal kidney function resumes. Unfortunately, it is highly unlikely that patients will achieve remission before at least some permanent damage has occurred. Permanent damage is caused when the vessels swell so much that they burst.

    We all respond differently to treatment, but from my experience, considering you started treatment for this flare late September, I would expect your kidney function to improve, but unlikely to be as high as your previous baseline of 40%.

    You may not need to achieve full remission for the inflammation and damage to your kidneys to cease. In my case, I have other symptoms of a flare, such as nose bleeds and increased fatigue, before my flare "spreads" to my kidneys. This would suggest that my kidneys are mostly affected when the flare is most active. So hopefully this suggests that once treatment begins it reduces the flare enough that kidneys are no longer involved, even though you might not be in full remission. Hopefully this is the stage you're at now.

    Once you are in remission your kidney function will stabilise, as it previously did. The only time when I'd expect it to continue to slowly decline is when you stabilise at a figure under 18%.

    Keep us updated. I wish you have some positive blood results soon. I truly believe that this isn't the start of a slow and permanent decline in kidney function.
    Diagnosed April 1995

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  13. #19
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    Default Re: Kidney Involvement

    Yes, this was very informative and helpful! I think what was meant by sudden kidney failure as opposed to normal kidney disease is that in normal kidney disease (not caused by GPA) your kidneys decline over time. Whereas, in GPA it is usually a sudden precipitous failure. I know in my case my kidneys went from normal to complete failure in the space of 1 month. Because of that, once your GPA is in remission your kidneys can begin to heal. It has been 6 months and I'm considered stage 3 A now. I may not improve much more at this point, it's unknown. I'm am trying to adjust my attitude and instead of crying because my kidneys may not improve further, I'm going to focus on where they have come since May. Reading posts from others here about their journey has been helpful. Last month, when I first heard myself referred to as someone with kidney disease stage 3 A, it was a shock. My doctor hadn't told me that. But I think it just takes time to adjust to the facts. And as many here have said, chance of relapse is good and each time you lose a little more function. But the people here are so matter-of-fact about it that I don't feel so hopeless.
    Thanks again.

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