Kidney Involvement

**Beth Ann** · 05-18-2011, 08:46 AM

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** · 05-18-2011, 09:09 AM

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** · 05-18-2011, 10:30 AM

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** · 05-18-2011, 10:38 AM

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

**Beth Ann** · 05-18-2011, 10:40 AM

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** · 05-18-2011, 10:50 AM

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** · 05-18-2011, 11:02 AM

Originally Posted by Daggar

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.

**Beth Ann** · 05-18-2011, 11:12 AM

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