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.
:thumbup:
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/ref=cm_sw_r_cp_api_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/ref=cm_sw_r_cp_api_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/ref=cm_sw_r_cp_api_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/ref=cm_sw_r_cp_api_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. [emoji106]

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.

[annekat]

Sorry, Gab, missed that you had included a link! Good old Amazon! And they are probably cheaper there, too. I'll see about adding them to my ongoing Cart there. But there are things you have to ask for at the pharmacy counter; I know that high potency iron pills is one. They really should have the urine testing strips.

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[Gab122]

Great info Drz! Thank you!
Anne, I have a filled cart at Amazon too! 😂

[DWendy]

Sorry, Gab, missed that you had included a link! Good old Amazon! And they are probably cheaper there, too. I'll see about adding them to my ongoing Cart there. But there are things you have to ask for at the pharmacy counter; I know that high potency iron pills is one. They really should have the urine testing strips.

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Using urinalysis dip sticks is a great idea but as drz mentioned, when buying them from Amazon you run the risk of receiving test strips that are close to, or past their expiry dates which can lead to false values. It was a good suggestion to buy them from a local source where you can check the expiry date before you buy them.


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[Gab122]

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.

I was anxious and ordered from Amazon last night. When I saw that the expiry date could be a problem I tried to cancel order but Amazon was too quick and it's already on its way. I'll check expiry date when it arrives.

I did call around to my local rite aide, Walgreens and a couple Walmart pharmacies. None had blood in urine test strips for sale. I see that Walmart cells Hemastix online but then you run into the same potential expiration date problem.

Drz - which brand do you use? Can you include a picture of the bottle? You said you found it at your local Walmart?

Any info is appreciated!!

Wendy, thanks for your input too! [emoji106]

Gab

[Gab122]

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

Hi Lisa,

Good reminder on the creatinine test! I'll ask to have that included. [emoji106][emoji4]

Gab

[drz]

I was anxious and ordered from Amazon last night. When I saw that the expiry date could be a problem I tried to cancel order but Amazon was too quick and it's already on its way. I'll check expiry date when it arrives.

I did call around to my local rite aide, Walgreens and a couple Walmart pharmacies. None had blood in urine test strips for sale. I see that Walmart cells Hemastix online but then you run into the same potential expiration date problem.

Drz - which brand do you use? Can you include a picture of the bottle? You said you found it at your local Walmart?

Any info is appreciated!!

Wendy, thanks for your input too! [emoji106]

Gab

I have Siemens Hemastix for 50 strips. They might have to order it but if you get it at a pharmacy they should ensure that it is fresh and good for a year or more. Hope your order out.

[Pete]

Hi Lisa,

Good reminder on the creatinine test! I'll ask to have that included. [emoji106][emoji4]

Gab

Creatinine is a part of the comprehensive metabolic panel so you may already be getting the test done. Do you have recent labs that you can look at to see if it's there?

[Gab122]

Good news! My Amazon urine test strips were manufactured 9/8/16 and expire 9/8/18.
[emoji106]

[Lilly]

Hi all, I have been reading everyone's posts on this thread, and I am so glad this option is available. I am constantly worrying about blood in my urine, and every time I have back pain in the lower area that lasts for a few days, I'm thinking....KIDNEY :( So, I'm going to get some test strips. Anything that can ease my mind without having to go to the doctor for another test!! Thanks to all of you! :-)

[Gab122]

Hi Lilly,

If you have back pain, you may want to go ahead and call your doctor. Better safe than sorry. You can always order these for use going forward.

Like Drz suggested try to get locally but if you can't find any, ordering online may be your only option.

I got these: Urinalysis Test Strips.
https://www.amazon.com/dp/B01E9PIQBG/ref=cm_sw_r_cp_api_1YR7xb6QSWJQ1
sold by MarsEzsales and the expiration date on the box was 2018.

If I had not already ordered through Amazon, I'd get this other product though through Walmart.com. It's more expensive but less complicated as it only tests for blood. It may be a more accurate test. But I don't know.
https://www.walmart.com/ip/Hemastix-Reagent-Strips-for-Urinalysis-Tests-for-Blood-in-Urine-50-ea/46111075

Let us know how you are....
Gab

[HazelEyed]

This is a good question. How about when creatine function looks good but labs show blood in the urine? Is blood in the urine always a sign of kidney involvement even with normal creatine levels? I just saw my rheum today and it showed large levels of blood in the urine along with other inflammation markers. She has begun the paperwork for rituxan.


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[Gab122]

Creatinine is a part of the comprehensive metabolic panel so you may already be getting the test done. Do you have recent labs that you can look at to see if it's there?

Hey Pete,

My creative
On August 1 was .81
On August 8 was .97,
On August 25 was 1.00

Normal, but it's going up. [emoji848]

More lab work on Wed 10/5 - this week.

[Pete]

Mine is consistently in the 1.3-1.5 range. It's above normal but stable. My doc is ok with this.

I'm sure your doc is tracking it and will tell you if it's a concern. This is but one variable we watch. How you feel is always a significant factor.

[drz]

One can have blood in the urine from other things than Weg involvement. But if it is a new development further evaluation is strongly recommended as our old departed guru Jack, often said, one can lose their kidney function in a few days and have no warning or discomfort till it is too late. The risk is much lower though after getting a correct diagnosis of Wegs since we are going to monitor things more closely and often are taking maintenance meds to minimize Weg activity and damage. The kidneys are also one organ that often can repair itself to some extent too. But kidney failure does happen and it is a real problem so being vigilant is sensible thing to do.

[Lilly]

Yay! Just ordered my test strips! I used the link above for the strips. I didn't get the cups because I just wasn't sure if I will need them, so Ill wait and see. Thank you Gab, and everyone else......I'm anxious to be able to have one less thing to worry about! Blessings and Love :-)

[annekat]

Gab, your creatinine is fine. It's around what mine is. But it only gets tested every 3 months, and my urine doesn't get tested, so I should get some of those strips. I'm glad the subject came up. But I hope yours stays where it is. I think mine was as high as 1.1 once and then started going down. Last one I think was 7.9. But I'd need to look for sure.

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[Gab122]

...I'm anxious to be able to have one less thing to worry about!

LOL
It's ironic that you said you are "Anxious" to have one less thing to "Worry" about. 😏
But I TOTALLY get that as a worrier myself! :)

Blessings to your kidneys and peace to your mind

~ Gab