Any kidney involvemnt

[maria garcia]

What to expect with kidney involvement?

[Al]

What to expect with kidney involvement?

Maria, I'll leave you a PM.

Al

[elephant]

Kidney involvement is quiet, your symptoms in the beginning are low back pain, itchy skin, tired, low hemoglobin, blood in urine, and ankle edema. That is why we nee to be vigilant in making sure our creatinine is not rising, by getting regular check ups or even asking about Labstix ( Reagent Strips for Urinalysis) to check for protien and blood in the urine. I was told by my Wegeners doc if I get blood in the urine, to call immediately.

[drz]

Kidney involvement is quiet, your symptoms in the beginning are low back pain, itchy skin, tired, low hemoglobin, blood in urine, and ankle edema. That is why we nee to be vigilant in making sure our creatinine is not rising, by getting regular check ups or even asking about Labstix ( Reagent Strips for Urinalysis) to check for protien and blood in the urine. I was told by my Wegeners doc if I get blood in the urine, to call immediately.

I was told if the Hemastix are positive meaning blood in urine to go get regular lab work done right away to check out kidney function and GPA markers. I think this would preceed the edema and low back pain. The other signs seem just a regular everyday part of my GPA and diabetes.

[Al]

Kidney involvement is quiet, your symptoms in the beginning are low back pain, itchy skin, tired, low hemoglobin, blood in urine, and ankle edema. That is why we nee to be vigilant in making sure our creatinine is not rising, by getting regular check ups or even asking about Labstix ( Reagent Strips for Urinalysis) to check for protien and blood in the urine. I was told by my Wegeners doc if I get blood in the urine, to call immediately.

This is all true. But it is important to note that low back pain, itchiness, hematuria (blood in urine), protenuria (protein in the urine), and edema (along with another sometime symptom, night sweats) all have a number of possible explanations other than ANCA disease. So, while any of these should be reported to the doctor, you shouldn't jump to any conclusions without some corroborating blood tests (and maybe a biopsy). For kidney involvement, creatinine clearance is the main marker. BUN (Blood Urea Nitrogen is also used, but this number is highly influenced by prednisone, so doesn't tell as much).

Al

[elephant]

Yes AL, that is true, and that is exactly what the doc would do is order further tests to rule out infection or kidney problems or other etiologies. We just need to be intune and listen to what our bodies are trying to tell us, even though sometimes we dont feel like it!

[Al]

Yes AL, that is true, and that is exactly what the doc would do is order further tests to rule out infection or kidney problems or other etiologies. We just need to be intune and listen to what our bodies are trying to tell us, even though sometimes we dont feel like it!

I agree, emphatically. The art of listening must be nurtured, in all participants, including the medics. Yet, it is true that the primary listeners must be those with the most skin in the game, the patients. I now know, ahead of the blood tests, what my personal flare symptoms are: a particular cough-inducing tickle it the epiglottis, and rusty urine. If these happen, Drac gets a call tout de suite. Then, I just hope he's listening....

Al

[Daggar]

Hello Maria, sorry to hear your daughter has kidney involvement -- it makes WG even more confusing. Holly's kidney function fell to 25-30% while in ER a year ago and her biopsy indicated significant damage (scarring - some permanent). The doctors weren't very optimistic about her recovery based on the biopsy. She has since surprised them by recovering to approx. 80% kidney function in one year. So, although kidney damage is considered irreversible, there is always hope that it isn't "permanent" damage and can heal with time. Having youth in her corner is a definite plus. For what it is worth, I let Holly's illness consume me for quite awhile and have now accepted that all we can do as parents is have open communication and closely monitor anything that would indicate a WG flare or kidney problems. The key is immediate intervention and treatment to lessen any further damage to the kidneys. All our best!

[aewaustin]

Recommend the sticks to test for blood in UA, helps you to gauge what is going on.
http://www.amazon.com/Hemastix-Reagent-Strips-Urinalysis-Tests/dp/B000GG5ZB2/ref=sr_1_10?ie=UTF8&qid=1321487662&sr=8-10

[drz]

That is an amazing improvement but like you say youth was probably the main variable along with good treatment. I was surprised years ago to learn that it is considerable normal to lose 1 or 2 % kidney function a year as you age. Mine started earlier due to diabetes. I heard many elderly people have only 20-40% kidney function and don't even know it.


Hello Maria, sorry to hear your daughter has kidney involvement -- it makes WG even more confusing. Holly's kidney function fell to 25-30% while in ER a year ago and her biopsy indicated significant damage (scarring - some permanent). The doctors weren't very optimistic about her recovery based on the biopsy. She has since surprised them by recovering to approx. 80% kidney function in one year. So, although kidney damage is considered irreversible, there is always hope that it isn't "permanent" damage and can heal with time. Having youth in her corner is a definite plus. For what it is worth, I let Holly's illness consume me for quite awhile and have now accepted that all we can do as parents is have open communication and closely monitor anything that would indicate a WG flare or kidney problems. The key is immediate intervention and treatment to lessen any further damage to the kidneys. All our best!

[maria garcia]

Hello Maria, sorry to hear your daughter has kidney involvement -- it makes WG even more confusing. Holly's kidney function fell to 25-30% while in ER a year ago and her biopsy indicated significant damage (scarring - some permanent). The doctors weren't very optimistic about her recovery based on the biopsy. She has since surprised them by recovering to approx. 80% kidney function in one year. So, although kidney damage is considered irreversible, there is always hope that it isn't "permanent" damage and can heal with time. Having youth in her corner is a definite plus. For what it is worth, I let Holly's illness consume me for quite awhile and have now accepted that all we can do as parents is have open communication and closely monitor anything that would indicate a WG flare or kidney problems. The key is

immediate intervention and treatment to lessen any further damage to the kidneys. All our best!

What test was used to measure her kidney function ? The doctor hasn't told me she has kidney involvement just some test results im not feeling comfortable with. I am going to take her to a nephrologist. What meds did Holly take that worked so well on Her? Is she on a maintence treatment.

[KathyB]

Apart from from ear pressure (popping), my initial symptom was a large amount of blood in my urine and a creatinine rate so high I was in acute kidney failure. Like others said, it crept up on me, too. Since I have a low functioning left kidney due to polycystic issues, a history of blood in my urine, and hypothyroidism, my GP orders bloodwork every six months. In April, my creatinine was 1.1 (my normal). In August, it was over 3.5 then topped out at 4.7 before WG diagnosis. Extreme fatigue, lack of appetite, bloating, back and body aches were my summer symptoms. I never imagined kidney issues. (Mid-summer, I was being tested for GI problems.) But WG wasn't diagnosed until the lungs become engaged. I had a kidney biopsy to confirm diagnosis. At that point, it was confirmed that WG had all but destroyed my left kidney and about 50% of my right kidney. So with the other damaged 50% of my right kidney, I've recovered very well and my new "normal" kidney function is about 1.8 with no dialysis needed as yet. Kudos, Maria, your daughter has recovered so much of her kidney function! I'm sure prompt diagnosis and aggressive treatment helped us both. We have been checking my function every 1-2 weeks, but I anticipate less testing in the future!

KB