Kidney involvement question

[Gab122]

Hi all,

I was just wondering.... For those of you who were diagnosed Weg GPA without kidney involvement... Did your kidneys later become effected by this disease? Were there symptoms that indicated kidney involvement that led you to have testing done?

I'm wondering how I would know if my kidneys became "involved". I heard they can be asymptomatic.

Just wondering what your experience was... Wanting to catch it quick if disease moves to my kidneys. I think I read that 20% have kidney involvement initially but 80% do eventually.

Thk you
Gab

[drz]

Wegs is sneaky and often unpredictable but often a flare repeats the same symptoms you had initially.

Monitoring by lab work is good idea to stay ahead of having serious damage from another flare. One can lose their kidneys very quickly with no symptoms till it is too late. But a weekly urine dip stick test will often detect any new Weg activity in the kidneys. Dipsticks are cheap and easy to use and cheap insurance along with other regular lab work.

[Gab122]

Thanks Drz! Great idea! I'll pick some up at the local drugstore -i'm assuming you don't need a prescription...
if so , i'm sure my dr would write a script for it.
My dr said she was ordering lab work at my next appt which is early Oct.

so that is coming up soon... i'll discuss with her frequency of lab work too.
Thanks again,
Gab

[Lilly]

I'm so glad you asked this question Gab122. I have been wondering the same thing. I'm going to take the advice and do it too! Blessings and Love, Lilly

[Gab122]

I'm glad I could be of help Lilly!

Drz - can you tell us more about these urine test strips? I went to my local CVS, and they had test strips for pregnancy, for ovulation, for UTI, for yeast infection, and even to determine gender of a fetus. But I couldn't find anything for checking blood in urine. Is this something that needs a prescription?

Thx
Gab

[Gab122]

Ooh. I think I found them.

Test strips:
Urinalysis Test Strips for UTI, Diabetes, PH testing, Ketone testing and more. 125 Urine Test Strips included. Complete 11 Parameter Chemstrips https://www.amazon.com/dp/B01E9PIQBG..._IMx6xbDD2VTSA

And little plastic cups. (Do they need to be big cups? Do you need to fit whole dipstick in the urine? )
3 Ounce Disposabe Plastic Cups - Pack of 100 https://www.amazon.com/dp/B017TUSXNE..._SNx6xbFB27J28

[LisaD1]

my advice is monthly blood tests for creatinine (sp?) - part of blood chemistry.

[annekat]

Ooh. I think I found them.

Test strips:
Urinalysis Test Strips for UTI, Diabetes, PH testing, Ketone testing and more. 125 Urine Test Strips included. Complete 11 Parameter Chemstrips https://www.amazon.com/dp/B01E9PIQBG..._IMx6xbDD2VTSA

And little plastic cups. (Do they need to be big cups? Do you need to fit whole dipstick in the urine? )
3 Ounce Disposabe Plastic Cups - Pack of 100 https://www.amazon.com/dp/B017TUSXNE..._SNx6xbFB27J28

I'm glad you found them. Were they on the shelves? Or did you have to ask the pharmacist for them? At Rite Aid they were behind the counter, several years ago when I asked. Did not buy them at the time because, although not really expensive, I was short on funds. Since then, I'd sort of forgotten about them, as I do have my creatinine tested in my labs and it has always been normal. But as others have said, that can change, as Wegs is sneaky. Now I use Walgreen's and also shop at Target where there is a CVS in the back of the store. So will make a point of checking for the test strips again.

[Gab122]

I'm glad you found them. Were they on the shelves? Or did you have to ask the pharmacist for them? At Rite Aid they were behind the counter, several years ago when I asked. Did not buy them at the time because, although not really expensive, I was short on funds. Since then, I'd sort of forgotten about them, as I do have my creatinine tested in my labs and it has always been normal. But as others have said, that can change, as Wegs is sneaky. Now I use Walgreen's and also shop at Target where there is a CVS in the back of the store. So will make a point of checking for the test strips again.

Hi Anne, no I didn't find them in the cvs unfortunately. - I found them on Amazon.com and included the link in my post above.

Added: here's a link to a similar product. It also tests for blood in it urine. Also sold on Amazon.
https://www.amazon.com/gp/aw/d/B01IPEDNIS/ref=ox_sc_act_image_3?ie=UTF8&psc=1&smid=A35NA3YJX %20L017Q

[drz]

I'm glad I could be of help Lilly!

Drz - can you tell us more about these urine test strips? I went to my local CVS, and they had test strips for pregnancy, for ovulation, for UTI, for yeast infection, and even to determine gender of a fetus. But I couldn't find anything for checking blood in urine. Is this something that needs a prescription?

Thx
Gab

I was advised to get them the first time i saw my Weg expert consultant at Mayo. I think most Weg experts would recommend them for anyone who had kidney involvement. I don't think you need a prescription in my state, although I had one to be sure I got the right product, but I could not get them at Walgreen's and had to go to Walmart to get them. I just asked my PCP about whether to just get the ones that test for blood or the ones that test for a lot of things.

He recommended to stay with the ones that only test for blood but to be sure to check the expiration date on them. They sell them on the internet but these might be expired or close to it and since you normally only use one a week so it would be important to know they will be good for a year if you get a bottle like mine for 50 strips and only test weekly.

They aren't a 100% accurate as there can be some false positives as some other things can some times cause a positive reading. The one time this happened to me I went and got my routine lab work as soon as I could. It was on a weekend and my readings were OK by the time I got my routine lab work done to confirm there was no blood in my urine. The amount of blood I had when diagnosed with Wegs and having serous kidney damage was not visible to the naked eye so test strips and regular routine lab are only way to monitor kidney function.

My brand came with a small plastic tube you can use to collect some urine and then dip the strip into it. Or the easier way is to just pass the strip through the urine stream and wait 60 seconds.