anyone ever had "Nephritic Syndrome".....? ( kidneys)

[Sangye]

Excellent motto, Doug.

[Lightwarrior]

Doug,
I support that approach also. As a nurse I could live in a cave and know when drug reps have been to the Doc's private offices, the use in a hospital setting of the drugs increases dramatically as do discharge prescriptions. I would add to your motto, fewest docs possible..limiting to the most qualified (WG specialist running the show)

[Sangye]

How are you feeling, Lightwarrior?

[Lightwarrior]

Still very weak, I can almost feel my Krebs cycle conk out. Leaning on my cane or a counter or just sitting down has been working for me when my back hurts from walking more than 20 feet or standing more than a minute until Friday. My back hurts unless I am sitting in a chair with strong support. Chewing a bite makes my jaw hurt before I am done (what a diet plan?) The general consensus among my providers is that my back hurts secondary to the extra weight from Prednisone (I was already overweight and had degenerative disk disease going on). I just had to take a small rest because my fingers and hands hurt from typing. I went to opthmalogist last week to get a baseline, and because my eyes tear all the time, sometimes my face is wet. He said it is because I have dry eyes and my body is overproducing to compensate, no Wegs involvement per him. Yesterday and today my nose burns at times when I breathe in, only small amount of bloody goobers. Since I am on 250 Cytoxan and 45 pred still I'm thinking it must be side effects. Weg should be controlled on these doses right??? I considered infection, no fever and I take 800/160 Bactrim Monday, Wednesday and Friday. Kids all had stomach virus a week ago. I'm still trying to wrap my brain around how do I know when I'm better? How do I know why I feel like dirt?

I'm also extremely tired of my body not doing what I tell it to do, I have always had this amazing mind-body connection. I have been coating my adhesion molecules in teflon so they won't clump toghether. I wonder what I'm missing at the cellular level that needs my own version of guided imagery??

Blah, blah, blah..even I'm tired of listening to me. Thanks for inquiring.

[Sangye]

Lightwarrior, it helps me to think that I'm reporting symptoms, versus complaining. Your post has the energy of reporting and trying to solve your issues, not moaning (although that would be fine, too--this is a forum to express whatever you need to).

It is possible to be on ctx but not have it work to control the Wegs. Every drug doesn't work for everyone. You have overall weakness, joint pain, excessive tearing, nose burning and bloody nasal discharge. To me that sounds like active Wegs. It's classic that each of your specialists attributes different symptoms to non-Wegs causes, but no one is looking at the whole picture. I think you need to talk to your rheumy and get a Wegs specialist on board.

[Lightwarrior]

I just used the contact part from the vasculitis site to inquire of Cleveland Clinic how I would go about getting a consult between Dr. Langford and my Rheumy. Your nagging is helping, thanks.

[Sangye]

Glad you contacted them! The VF is very good about emailing you right back. If you don't hear back tomorrow, call them.

You can also call Carol Langford's office yourself and get the ball rolling. This is the number from the VF site.
Phone: 216-445-6056
Web: www.clevelandclinic.org

[elephant]

Lightwarrior, you wll love Carol Langford...I am seeing her again in June. I agree with Sangye with above symtoms that your having...
My local Rheumy called Carol Langford when I was in the hospital...I was falling apart and my local Rheumy was scared...but I am thankful to have such a smart/nice local Rheumy and still get to see Carol Langford at the Cleveland Clinic.

[Lightwarrior]

Thanks, If I'm going to be a good nag apprentice I better start taking advice. :-)

[Lola]

It took me awhile to realize that reporting my symptoms is not whining. I found the Birmingham Vasculitis Activity Score Modified for Wegeners tool. Either the original scoring tool was developed at the U. of Birmingham, Edgbastan - West Midlands, UK. Go team, Jack!
And/or it was modified for use in Wegener's in the UK.
At any rate, once I read and digested it, the light bulb went off in my head and I realized that many of the bizarre and seemingly disrelated symptoms I was having were part of the disease.

It wasn't until I took notes with me to the Rheum. appt.s ...doh...and made the dr. aware of what was going on with me - did I move on to a different drug when necessary.

Please forgive me if you all know about this - I didn't. The link is below.

http://vasculitis.med.jhu.edu/research/bvas.html