Wegener's granulomatosis

[nkviking75]

Just curious if anyone else here has Wegener's granulomatosis, as I do.  I have a somewhat unusual case in that it has only affected my kidneys.  One nephrologist considered writing a paper about my case because it's a bit quirky.  I have been in remission pretty much all through my time on dialysis, 5 years this week.

[mallory]

nkviking75, I have Microscopic Polyangiitis, which is a lot like Wegener's.  I know both diseases are uncommon, I'm the only patient my Rheumatologist has with MPA.  It is interesting that your Wegener's has only affected your kidneys, my condition has affected my kidneys and my lungs.  I'm currently on IV Cytoxan and Prednisone for the MPA, but I've tried oral Cytoxan and Cellcept.  What do they have you taking?

I think Stauffenberg also said he had Wegener's, read his introductory post.

[nkviking75]

I am fortunate to be in remission, so at the moment I'm not taking anything for the Wegener's.  But I have downed a lot of Cytoxan and Prednisone in my time.  My remission is about as long as the time I've spent on dialysis, which is 5 years.  In that time I've only taken Prednisone if I need a fistulagram because I am allergic to IV contrast.  If there's a silver lining to dialysis, is the monthly blood tests that enable my doctor to keep an eye on my condition.

[Falkenbach]

Hello NKViking

I have just entered this area of the board to post on this very topic.

I have just lost a close friend (on Wednesday) - BUT PLEASE DO NOT BE ALARMED. The Wegener's Disease didn't kill her, pneumonia did. But I was going to start a thread on this very topic because I wondered if anyone else had any experience with the disease.

Your case certainly does sound quirky. My friend had no trouble with her kidneys, even though they are often one of the first organs affected by Wegeners. She had two sinus operations before the hospital could work out what was wrong with her. It took 4-5 months to get a diagnosis, and soon after she had part of a lung removed (hence the pneumonia being so serious).

The disease affected her in other ways too. The bridge of her nose basically collapsed, and a hole developed in the roof of her mouth. But she was so strong, and had been doing so well in recent times.
 
So I wanted to ask the same question as you basically - has anyone else had experience with it? And please don't allow my post to alarm you either. My friend had a very good survival rate of 80%. She was just unlucky that she got pneumonia.