Odd test results

[Anne0505]

Hello,
I have had all the initial labs run twice for WG. My white cell counts are normal, but my inflammatory processes are elevated. However, my MD keeps saying that they are not as high as she would have expected considering the trouble I am having. They did find a 2 cm diameter nodule in my lung last week and are doing a biopsy of it Tuesday. So, I had some questions.
1) has anyone ever had labs that were only somewhat abnormal, but still had wegeners? I honestly don't know what happens if the lung biopsy isn't conclusive.
2) I am having a ct driven lung biopsy, is this going to be very painful?
3) I have developed the saddle deformity over the last 2 weeks. Will it be possible to repair?
4) assuming they can confirm, is living on the rtx very difficult? How long to see improvement?

[Pete]

Hi Anne,

Here's my two cents worth...

1. I'm assuming your doc is using sedimentation rate and C-reactive protein to check inflammation. These are general inflammation markers not specific to wegs. Therefore, you could be showing some sort of systemic inflammation without having wegs.
2. I think you'll be given a "twilight" anasthetic. You'll be somewhat awake, but won't feel anything.
3. I have no experience with saddle nose. Others will likely respond to this question.
4. For me, living with rtx has been a non-event. I'm a little tired for 24-48 hours following the infusion, and then I'm back to normal.

[Alysia]

Hi Anne,

from my experience:

1. You can have WG with normal blood tests, even when there is wg activity. When it is a big flare it will show up in the labs but not when it is smoldering. Smoldering can also cause damage (like saddle nose) and must be treated. This is how I got my saddle nose.

Did they check your C-anca and PR3 ?

2. I dont know. I didnt have lung biopsy.

3. Saddle nose can be fixed in a plastic surgery but only after being in a remission at least a year.

4. Living on rtx is ok. I do, since 2013. As for improvements, each case is different. For me it started to work only after 3 months and the full impact was after 9 months and second infusion 6 months after the first infusion. But its because I was not treated decently too many years before. The faster one start, the faster he can get into remission in most cases.

Hang in there. You are on the right way to recovery.