Kidney Involvement

I'm posting here to give some info about my kidney involvement. At this time this is all that I have. No symptoms at all. In fact I didn't even know there was any problem until my dr called to say my kidney function was low, I was put on a low salt diet 4 years ago to help with the blood pressure and take a load off the kidneys. I have been going every 6 months for blood work as I am on Blood pressure and cholesterol meds.

For the last 4 years my kidney numbers have been Creatinine 1.05-1.25 consistently with eGRF in the 49-56 range. Low but needing to be watched.
Mar 2017 Creatinine 1.2 eGFR at 50;
Sept 2017 Creatinine 1.4 eGFR to 40.8.

at this point my regular dr said drink more water and exercise and come back again in another 6 months. I really wish right here I had asked more questions and had a followup sooner than 6 months.

Mar 2018, my Creatinine had risen to 1.6 and eGFR was down to 34.9. That's when my regular dr referred me to the Nephrologist.

On Jun 6, on the day of my kidney biopsy Creatinine 1.7 and eGFR down to 31.9.

My 1st followup blood tests are tomorrow and I am really hoping to see any kind of improvement. My hubby doesn't want me to get my hopes up too high but to me any movement in the right direction will be a plus. Wish me luck!

Linda

Good luck with the test results!! How's your Sodium Bicarbonate level? Mine was low and my kidney function increased when the doc prescribed me a supplement.

Hi Linda,
I hope everything went okay with the doctor's. I too have had kidney problems, along with permanent damage, since being diagnosed with Wegener's last July and have to watch my protein intake and drink lots of water.

Sandy

I hope the latest blood tests showed some improvement.
Are you sure that there is no vasculitis activity at the moment (i.e. ANCA, crp, etc are good). If you're relapsing, then remission is what you need to halt the declining kidney function.
If you're not relapsing, then that sort of steady decline in kidney function is worrying. Until my gfr dropped to below 20, my function hardly dropped except when I was having a relapse/flare of Wegener's (then I'd have a big drop in kidney function).

Hi Linda,
I've just read your introduction and I think I'm correct in thinking that you've only recently been diagnosed and started treatment. As far as kidney involvement, this is good news as although Wegener's is damaging your kidneys at least there is reason for deteriorating kidney function and it is currently being treated. If your function was dropping while you were in remission with no vasculitis activity, I would be more concerned.

When a drop in kidney function is large and rapid, kidneys can often start to improve once the cause of the decline has been dealt with. The slower, progressive, chronic deterioration is usually irreversible.

I am certain that shortly after you achieve remission your kidney function will stop deteriorating. I am really not sure how much function will return, as the 28% drop from March 2017seems too large to be considered slow, chronic deterioration, but usually (with me) my function drops around 15-20% within just a month or two of a relapse.

One final point. If your function still continues to drop after your dr confirms that there's no more vasculitis activity, don't panic, this will be the scaring from the previous activiy.
Imagine a paper cut on your arm. Once it stops bleeding, you see a very thin cut. After a day or 2 the scaring (scab) is much wider than the initial cut. On the skin the scab will drop off leaving a tiny scar or perfect healed skin. The scaring on the delicate parts of the kidney takes a few days to weeks and may not heal, but the scaring won't go out of control though and will stop.

Hi linda1226

Thanks for sharing your experience. Last week I got flare up of my GPA which was quiet for 6 months. This time kidney function was down (80-> 50) in a month, all inflammatory GPA markers were up and dr are very certain that this is GPA related. I have been recommended a kidney biopsy (since no organ was involved before) and pushed on Prednisone 60 mg.

Rheumi likely to recommend Rituximab (?) post the biopsy results.

How has been your experience since you posted this? What helped? What didn't?

_S_

Hi @shankxonline ,

I don't think Linda has posted anything in the last 3 years.

I'd try not to worry about your kidney function too much. A sudden drop is preferable to slow chronic decline over many years.

A kidney biopsy is by far the best option as they results tend to be very accurate.

If the biopsy confirms the loss of kidney function is due to GPA flare (which I suspect it will), then prompt, aggressive treatment such as RTX should restore your kidney function. But do bear in mind that you will need to be super vigilant for the rest of your life with blood results, as I'd suspect any future flares could affect your kidneys and they are quite delicate.

In my experience every flare caused kidney function to dramatically fall, which would then recover somewhat, but not to the original level. Eventually all my flares added further damage and once my kidney function dropped to 18%, it was a steady decline, even without flares, resulting in my kidney transplant.

The sooner you detect and get treatment for a flare, the less permanent damage to your kidneys.
You are unlikely to feel any ill effects of kidney disease until function drops below 15%.

RTX is a n excellent drug and if it had been available to me before my many flares, I suspect I would not have needed a transplant. Even with inferior dugs to RTX to treat my flares, my kidneys lasted about 25 years from first diagnosis of WG (GPA).

Super helpful gilders. Thank you!

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Originally Posted by andrew

Good luck with the test results!! How's your Sodium Bicarbonate level? Mine was low and my kidney function increased when the doc prescribed me a supplement.

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Hey Andrew,
Just saw this reply from you as I was browsing through some of the posts. I'm interested in your statement here. My CO2 had been a little low on my labs so my Nephrologist told me to start taking a teaspoon of baking soda every day. I did that for a while and it helped but I did not like taking that because of the taste and it acted as a laxative. I started buying some Ph pills online but they didn't seem to do anything. Recently I've been drinking lemon water. That is supposed to help raise body Ph. After drinking it for a month, it seemed to help my kidney function a little bit. What was the supplement your doctor prescribed for you?

My turn to apologise for missing a post :)

I take something called Sodibic which is 840mg of Sodium Bicarbonate in a capsule form. From my last lot of bloods it seems to have helped increase kidney function. There's a link to it here: https://www.healthdirect.gov.au/medi...036103/sodibic

Not sure if anything like this is available where you are but maybe something similar. Here I have to have a prescription.

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.

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.

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.

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.

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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Originally Posted by little sister

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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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.

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Originally Posted by gilders

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.

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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.

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.

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.