View Full Version : Kidney Involvement

06-28-2018, 11:32 AM
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!


06-28-2018, 04:10 PM
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.

06-30-2018, 06:26 AM
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.


06-30-2018, 09:39 AM
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).

06-30-2018, 11:00 AM
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.

02-13-2021, 07:38 AM
Hi linda1226 (https://www.wegeners-granulomatosis.com/forum/threads/members/10103-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?


02-14-2021, 03:31 AM
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).

02-14-2021, 04:03 AM
Super helpful gilders (https://www.wegeners-granulomatosis.com/forum/threads/members/7952-gilders). Thank you!