Kidney Involvement

[Beth Ann]

Hi,

My mother was diagnosed with wegener's almost 2 months ago and her kidneys have been the most impacted. When admitted to the ER her creatinine was a 6.0 and it is now down to a 3.0 which is still high. She had blood work taken yesterday and her creatinine results came back 3.1 so now i'm in a panic. She is not on dialysis and there hasn't been talk yet about starting her. Her nephrologist is an excellent doctor and has had experience treating wegeners however he is not a specialist in it and we are planning contacting a doctor at JH in Maryland. I'm interested in others who had kidney involvement and creatinine levels at diagnosis and what treatment seemed to be most effective. I understand everyone is different and no treatment is the same but its nice to just hear others journeys.

My mom is currently on 100mg of oral cytoxan and 30mg of pred.

Thanks in advance!

[Michael Dean]

Hi Beth Ann,
Sorry to hear about your mother.
I too had kidney involvement. But my creatinine level was much lower than your mothers. I was around 2.0 2-1/2 months ago when I was diagonosed. When I left the hospital it was at about 1.2 not bad. I did shoot back up to 1.8 about a month ago???
They have me on 60mg of Pred daily and 100 MJ of cytoxan infusion once a month.

Good luck

[Daggar]

Hi Beth Ann,

Holly's creatinine level at the time of admission was around 2 (high for a 14 year old female) and climbed up to 2.2 during the first week at the hospital. Once the drugs started to do their job it decreased significantly within the first month then seemed to plateau at the 2 month mark at around 1.5. The nephrologist stopped her taper of oral pred at that point and started high dose methylprednisolone in addition to the 35mg of oral she was still on (50mg initially). She was scheduled to receive 1g monthly (Feb-Mar-Apr-May-Jun) while slowly continuing a taper of the oral. There thoughts were that they wanted to do as much as they could to eliminate any further damage to the kidneys. She is currently on 17.5mg of oral pred daily and she is scheduled for her last iv treatment June 2nd. Her creatinine is now staying around 1.1 so even though the extra pred wasn't the most desirable thing it did appear to help her kidney function improve a bit since. Keep in mind that there has been plateaus throughout the 5 months that she has been treated. Your mother may be experiencing that at the moment but that could change on the next test. What was the pred dosage initially?

[Daggar]

THis may be of interest to those who have kidney issues - not sure if this "new drug" can help WG patients but it has shown promise in studies for diabetics with kidney disease.

Drug effective in treating kidney disease in diabetic patients, study suggests (http://www.sciencedaily.com/releases/2011/04/110421171707.htm)

[Beth Ann]

Thanks for your reply. She was initially on 1000mg iv the first 3 days and then they moved her to 40mg the last month which just changed to 30mg yesterday. I was just in shock because her numbers have dropped so quickly and even though it went up .1, it hit us hard. My mom and I have been following your posts about your daughter. She is a true inspiration and I envy her strength!

[Daggar]

Yes, she's a tough cookie and I'm not sure where she gets it from....

How often is your mom being tested keeping in mind that the numbers come down fairly quickly in the first month or so and then have a way of bouncing around a bit while still declining. What other meds is your mom on? Did they give her any b.p. meds?

[pberggren1]

Yes, she's a tough cookie and I'm not sure where she gets it from....



COOKIE? What type of cookie? I prefer chocolate chip. :w00t:

[Beth Ann]

She is tested once a week. She is on a blood pressure pill and I think they are going to raise that because her pressure has been creeping up a little. Other than that its just the 30 mg pred,100mg cytoxan, a pepsid, her blood pressure pill and her vitamin D

[delorisdoe]

COOKIE? What type of cookie? I prefer chocolate chip. :w00t:

If It is to be a tough cookie I prefer oatmeal. I like my chocolate chip to be gooey:biggrin1:

[delorisdoe]

COOKIE? What type of cookie? I prefer chocolate chip. :w00t:

If It is to be a tough cookie I prefer oatmeal. I like my chocolate chip to be gooey:biggrin1::w00t::w00t:

[Sangye]

Beth Ann, so sorry to hear about your mom. I'm glad to hear she will be going to JHU. That's where I go. Even though her local doc has treated some Weggies, it cannot replace the skill of the Wegs specialists. Please do not wait to get started on it, because it can take several weeks to get her in.

[Kathie28]

I have kidney involvement but I've never been as high as your mom. My levels peaked at 2.4 and I was on Rituxin and Pred. I started off on 60 mg of pred and right now I'm at 40. I did the 2 infusions of Rituxin and my Creatinine levels have stalled at 1.3 which is pretty decent. I recently climbed back up to a 1.6 after a blood clot but after high doses of steroids in the hospital if came back down to the 1.3 mark. I wish your mom the best. I know there was times I seemed to stall a bit and then it would fall a little more. Hopefully hers will keep coming down.

[Daggar]

She is tested once a week. She is on a blood pressure pill and I think they are going to raise that because her pressure has been creeping up a little. Other than that its just the 30 mg pred,100mg cytoxan, a pepsid, her blood pressure pill and her vitamin D


A .1 increase over a week span isn't too much of a concern considering, like Kathie said, the numbers do have a way of going up and down a bit in the short term but hopefully they continue to decline over time.

Her nephrologist will probably be watching the numbers closely to see if they think they need to slow down the pred taper.

Wish your mom all our best!

[Daggar]

COOKIE? What type of cookie? I prefer chocolate chip. :w00t:

No Phil, she's more of a "Ginger" Snap! Ginger for the red/auburn hair and snap for volatility of the aforementioned redhead -- the high levels of pred running through her veins may have something to do with that as well.:wink1:

What is it with Canadians and their "cookies"? You'd have to look far and wide to beat a nice chewey chocolate chip cookie but I tried a "Ranger" cookie quite a few years ago that was incredible! Anyone know the ingredients needed to make a "Ranger" cookie?? More of a sweeter oatmeal .... brown sugar.... ??

[Sangye]

LOL Daggar, you must be getting pred by osmosis.

[aewaustin]

In 1992 when I was diagnosed I was in bad shape with my kidneys, they said I was losing 20% of my kidney function per month (I don't recall the exact numbers). I was put on 100 of oral cytoxan and 60 of prednisone and that treatment worked to get me into remission. At the time I had a kidney biopsy and I had crescents all over and the biopsy was generally just horrible. Good news is that in 2003 when I had my next biopsy my kidneys were so healthy that they could not tell I had any damage from the first go round. So good news is that it can be really bad, but the kidneys can bounce back :)

[Daggar]

I'm getting something that's for sure.... living with 3 females (pets also female) has me wondering at times! Thank god for the dirt bikes.... hockey.... gym.... it's the only time I can safely say I still have a wee bit of "machismo" left....:flapper:

And "YES"... I'm due for another "fishing trip"!!

[Sangye]

LOL Maybe just go outside and roll around in the dirt every so often. :laugh:

[zylodey]

Hi Beth Ann, my kidney levels were at about 2.2 and after about 6 months of treatment, they hovered around the 1.2 level. Now they are at 0.8 after two years of treatment. I received an IV dose of cytoxin and prednisone for my first treatment in the hospital (I am not sure of the exact dosage, but I know it was a lot). I was then put on 60 mg of prendisone (tapering every month) and 150 mg of cytoxin for approximately 6 months. I also had high blood pressure and put on a drug called ramipril, which my nephrologist said would protect my kidneys. When I first got home from the hospital, I did some research on the internet about a kidney friendly diet - no whole grain, and pretty much followed it very closely. I also had very high pottasium levels, so had to watch that I didn't eat foods high in pottasium. I don't know if this diet helped, but my kidneys seemed to have recovered fairly well. After two years, I am off the prednisone and now only taking 50 mg of Imuran and hopefully will be off all medication in about 5 more months.

[Daggar]

Hi Beth Ann, my kidney levels were at about 2.2 and after about 6 months of treatment, they hovered around the 1.2 level. Now they are at 0.8 after two years of treatment. I received an IV dose of cytoxin and prednisone for my first treatment in the hospital (I am not sure of the exact dosage, but I know it was a lot). I was then put on 60 mg of prendisone (tapering every month) and 150 mg of cytoxin for approximately 6 months. I also had high blood pressure and put on a drug called ramipril, which my nephrologist said would protect my kidneys. When I first got home from the hospital, I did some research on the internet about a kidney friendly diet - no whole grain, and pretty much followed it very closely. I also had very high pottasium levels, so had to watch that I didn't eat foods high in pottasium. I don't know if this diet helped, but my kidneys seemed to have recovered fairly well. After two years, I am off the prednisone and now only taking 50 mg of Imuran and hopefully will be off all medication in about 5 more months.

zylodey -- that's not "fairly well" ... that's awesome if you're staying in that 0.8 range! It is also very encouraging for others that the improvement continued beyond the 6 months.

The Nephs told us that they can't pinpoint the exact amount of long-term damage from a biopsy but they can approximate with the amount of old scar tissue -- percentrages I guess.

I 100% agree on the "diet".... it has helped Holly a lot.