Kidney Involvement

[gwenllian111]

Hi
I've not experienced Kidney involvement for over 10 years, and so don't remember the symptoms that come with it.

I've been getting very bad headaches lately (literally over the past week), feeling sick and faint, and my joints have been sore.

So, I went to see my Rheumy today. My BP was high, +2 blood, +3 protein in urine. He asked if I was on my period (sorry tmi) but i'm not, as i'm still breastfeeding so i've had nothing like that months.

My CRP in Jan was 20, but kidney function back then was normal.

But, i've heard that blood work will not show a deterioration in kidney function until things are quite bad - is that true?

I've had no swelling to speak of, as i see that some people have that if they have kidney problems.

THanks for any info xx (love you guys) :-)

[Sangye]

I'll let the kidney experts answer the questions about that-- I don't know much about it.

Did you get an MRI of your neck? It sounds to me like Wegs inflammation causing Vagal nerve compression.

[Jack]

The test for kidney function is the creatinine level, but when established by blood test it is not a good initial indicator of kidney health. There is a wide variation in results between patients depending on many different factors, but once a level has been established it can then be used to track any deterioration (or improvement) in kidney function.

The test used for initial diagnosis is creatinine clearance. This is usually made using a 24 hour urine collection.

I'm not too sure of the details of these tests or why the results are different, but I do know that in my early days of diagnosis I made several 24 hour collections which then stopped when they had established what my kidney condition was.

[DEE]

hi im just in the proccess of sorting out my kidney involvement i was made aware last month when i went for check first doc not happy with blood pressure and pulse then found blood and proteine in urine sample
have had biopsy of kidneys results tomorrow
since biopsy weekly urine samples two weekly bloods which dont give any course for concern other than the occasion pain around kidney area and occasional infection cant say have had a great deal of problem so far and fingers crossed
will let u know tomorrow what doc says as find al the pros and cons mind blowing sometimes so have made a list of questions to ask wg consult about above and other things DEEx

[DEE]

jack u made me smile when you mentioned 24 collection have transported several off them around rather then stay in !!! and made several round trips to the city to take them to the lab !!

[gwenllian111]

I'll let the kidney experts answer the questions about that-- I don't know much about it.

Did you get an MRI of your neck? It sounds to me like Wegs inflammation causing Vagal nerve compression.

That's exactly what it was! The steroids and Ritix kicked the swollowing problem into touch, but there's still a mass there. I don't seem to be having any obvious symptoms in that area at the moment though, thank goodness.

Just generally feeling not quite right!

How are you SAngye x

[Luce]

I have kidney involvement but there aren't really many symptoms to speak of. It was only when a nurse saw blood in my urine they decided I had kidney involvement. I only remember not having to spend a penny quite as often in the weeks leading up to being admitted, no pain from the kidneys.

I've been told the same thing about creatinine, it's hard to judge what a normal baseline level is when you're already experiencing kidney involvement as normal varies so much person to person.
Since my initial diagnosis however my kidney function has continually improved and I'm told my kidney function is 69, but I don't know from what test the number is derived.
I think if it's caught early enough kidney involvement can be stopped before causing any lasting damage.

[Jack]

The thing to be aware of is that renal failure has very few symptoms until it reaches life threatening levels. This happened in my own case. I had sinus and joint pain Wegener's symptoms, but it was only blood tests that showed the fact that I was in a critical condition. This is why it is so important to get a diagnosis and the correct treatment as soon as possible.

[elephant]

With kidney involvement, like Jack stated they do the 24 hour urine along with the blood work creatinine and BUN. The reason for the 24 hour urine is to see how the kidneys are working in a 24 hour period. With a normal kidney there should not be any protein, ketones(sugar) , or blood in the urine. So on top of that they would cultlure it too sometimes to rule out infection.
This 24 hour urine is the first sign. That is why we all should be peeing in cups often. Kidney disease is silent, you could have lower back pain and high blood pressure with it too.

[gwenllian111]

The thing to be aware of is that renal failure has very few symptoms until it reaches life threatening levels. This happened in my own case. I had sinus and joint pain Wegener's symptoms, but it was only blood tests that showed the fact that I was in a critical condition. This is why it is so important to get a diagnosis and the correct treatment as soon as possible.

Thank you very much for your replies. I also had +2 ketones, to me it all points towards kidney involvement...will wait to see what the bloods say, and hopefully my doctor will ask me to do a 24 hr urine sample too.

How are you doing Luce?

[Luce]

I'm doing well thanks - I had my first Rituximab last Friday and although it took all day it went really well. The pre-med antihistamines knocked it out of me for a while though and I felt like I had a massive hangover all weekend.
Still waiting for my iron infusion which I'm sure will give me the boost of energy I need to prepare for the wedding, only 2 months to go now!

Sorry to hear it sounds like you're flaring Gwenillian :(

[elephant]

I bet you are getting so excited about your Wedding Luce! Are you wearing the traditional off white or white wedding dress?

[Luce]

I know I'm in danger of the off-topic scorn from Andrew but yes, I'm wearing an ivory dress but the boning and lacing through the corset is in navy. I've had it made for me because I never found the perfect dress and wanted to combine elements from 3 different dresses.
I'm getting excited although the recent hospital visits and treatment feel like bad timing, but if they work I should be feeling pretty healthy by 16th April.

[elephant]

That sounds so pretty. This is a happy and great time for you. You get to look forward to something so special, it will be a wonderful day. Sorry Andrew.
When do you get your next Rituximab?

[Sangye]

Luce, did you have to take any IV pred during the infusion? Are you on oral pred? I know we talked about this, but I don't remember what was said.

[gwenllian111]

Is the Ritix working for you? I had my last 2 infusions in October, and it's mean to last at least 9 months, but i'm having a flare already. :-/ My rheumy has checked my CD19 count to see where i'm at with it, but I don't think you can have any more infusions for a certain amount of time, is that true?

Luce - your dress sounds amazing!!! When's the big day?

[Sangye]

I just emailed my Wegs doc the other day to ask if I can do the next round of ritux soon. (He had said we'd do it in the spring) The 4wks of ritux in October seems to have put the major fire out-- my lungs aren't bleeding-- but the Wegs is by no means under control. And before this, I wasn't on pred. I haven't been able to decrease by even 1/2 mg without flaring up symptoms. The ritux thinks its work is done and now it's time for vacation.

I was told ritux lasts 6-9 months, but for some people they need it every 4 months.

[Luce]

I have another Rituximab infusion next Friday, 26th Feb. I'm on 10mg of oral pred Sangye and I definitely had some IV pred before the infusion, but I don't know how much as it was in a syringe with the antihistamines which went straight into the drip along with a bag of saline.
Wedding is 16th April, getting scary close now.

[elephant]

Sorry to hear that Sangye. So what are they going to do? What would be the next step?

[Sangye]

I'm still waiting to hear back. He's out of the office this week. It can wait until next week, anyway. I think he'll probably be okay with doing another round of ritux sooner than spring. I'm hoping for March.

[DEE]

just got results of kidney biopsy along with bone scan all ok treatment beginning to work AND trying to lower pred by 2mg fingers crossed its when i do this things go wrong but going to look on the bright side its a small step forward wg consult told me that it could be possible they are going to set up a wg clinic and support group at local hospital which could be good if it comes off
still wont let back to work full time says that things are going well at moment and does not want to rock the boat ! hope everyone doing ok too DEE x

[Sangye]

Dee, how much pred are you on? Decreasing by 2mg can be huge, depending on the starting dose.

[DEE]

im staying on 20mg for at least next six weeks and can contact wg consult on daily basis if i think i have a prolem and doc surgery five mins away from home DEEx

[elephant]

Wow, that is great Dee. You sound like you have a grea WG specialist. Hope all goes well with the prednisone taper.

[Jack]

Dropping 2mg when you are on 20 sounds fine to me. Hope it goes well for you.

[DEE]

thanks eveyone i know how lucky i am to have a good wg consult he knows me well and can make light and a laugh aswell as dealing with the serious side with him

we always laugh about him going on holiday the last twice i have had problems so now he does not tell when he going just incase told him hes not allowed to leave the hospital ever !!!!