?Limited Wegeners

[Brooke]

Elephant -
My doc at mayo had put me on anther short course of steroids and also sodium chloride nebs after my bronch there this Sept. She wants me to have another bronch in Dec to open up those airways. If it is still inflammed, she is thinking I will need Cytoxan. If it is settled down, they will continue to open up airways and I will still do another course of Rituxan infusions to keep it at bay. I really, really, do not want the Cytoxan. Rituxan has helped me so much but I guess my airways under all the scarring was still inflammed.

Sangye - Yes I hope the fatigue gets better for you too. I hate that feeling when there are things you want to do and just can't because you are exhausted.

[Sangye]

You can get a decent idea of how active (or inactive) your Wegs is by using the BVAS. It's what the Wegs docs use to evaluate Wegs activity.

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score

(I know the links say the same thing. No, I haven't lost my mind. The first has the general info on it and the second has the scoring form)

[Jack]

BVAS picture -

[Sangye]

ROTFL.... Oh man, that's funny. You can just tell they know how to evaluate Wegs, too.

[elephant]

The one on the right is ready to take a nap!

[Geoff]

You can get a decent idea of how active (or inactive) your Wegs is by using the BVAS. It's what the Wegs docs use to evaluate Wegs activity.

Looking at these BVAS I would surmise my Wegs as either;
a) Leaving me High and Dry
b) Out on a Limb
c) Dazed and Confused or
c) Frankly not giving a Dam (or building one for that matter!)

[elephant]

How about all of the above! LOL

[drz]

I was told that I was in remission June 2010, but I still have minor stuff going on...itchy ears, feeling like I am talking in my head....but if I sniffle then it goes away, and the little red dots in June and August.
I think Remission means:
1. No lung nodules
2.No joint pain
3. No fevers
4. No coughing or blowing blood
5. No fatigue/severe weakness
6. Acceptable labs values..PR3, creatinine,

Is it realistic to expect no fatigue or severe weakness when we have incurred lung damage and kidney damage which will cause fatigue and shortness of breath? Some healing may take place and endurance may improve but I think some weakness and low endurance to physical activity is likely to persist. The other criteria seem good markers for remission. What is acceptable lab values will vary according to individual and how they respond to Wegener's disease?

[elephant]

Hi Drz, yes to your question number 6. On number 5, should be worsening fatigue and weakness. I had lung nodule and kidney failure and I felt very weak, but once a got a kidney transplant I felt so much better. It took a long time for me to recover after thoracic surgery, it really depends how much damaged has happened.

[Nancy]

Word to the wise... I had been diagnosed with "limited WEGS" x 14 yrs - lung involvement only.... on and off Cytoxan/pred as the cough/hemoptysis worsened and then got better... Last Nov - got an H1N1 shot - just like so many others did - I went into systemic WEGS... wow!!! always keep your eyes and ears and mind open... There is NO expected course for WEGS... It would be appropriate for the song - "Who let the DOGS out" to play at this time... Management and maintenance are the keys to WEGS and of course good advice!!