NanTom

[Sangye]

I'm happy to hear Tom has been to JHU. Dr Seo is my Wegs doc there. Shingles sounds horrible.

[drz]

Hi!

So grateful to find this site. I will probably do most of the writing for hubbie who was diagnosed 4 years ago (shortly after retiring from a career in education) with numb foot and kidney involvement. After Cytoxen for a year, including becoming diabetic due to high prednisone, he went into remission (and no longer was diabetic)! Imuran was tried twice, but always resulted in a very high fever. Cellcept has been the drug used for several years. At one time he did so well the Rheumy almost took him off of the one pill per day. Since May 2010, he keeps having flares. He is now on 6 pills per day (max for Cellcept) and keeps having flares and can no longer get below 10 mg. prednisone without a flare, so considering Retuxamab infusions. Now we add the new diagnosis of shingles to the mix.

We welcome any information, help or encouragement. Maybe some of our experiences could be of help to someone else. We are happy to help if we can!

Does you rheumatologist consult with another expert on Wegener's disease? Ask him about a consult with another expert on Wegener's disease. In my experience all good doctors welcome such a request and are usually relieved when a patient brings it up. A consult will either confirm the treatment is appropriate or suggest some other alternatives to explore.