Prednisone & Azathioprine (imura)

[Guest mlosiewi]

I have been on 30mil of Prednisone for 10 weeks now for refractory sprue. Per an upper endoscopy and the Pill cam test I have total loss of villi in my small intestine and some in my lower. I have gained 30 pounds from the steroid and am feeling very puffed up, moon face and large shoulders, etc. My Dr. was thinking about trying the Azathioprine to try to heal my intestines, but there are some pretty bad side effects. I was wondering if anyone else has been on it or on the steroids?

Has anyone else been diagnosed with refractory sprue, I know it is very rare, but believe me my Dr. has put me through all the tests, and yes I am 100% gluten free for 2 years now. My Dr. is thinking about sending me to the Mayo Clinic, If my insurance won't cover it I don't think I can afford it.

I also had the genetic testing done and have both the DQ2 and DQ8 on both sides of my parents. Any suggestions or help would be appreciated as this is pretty much consuming my life. Thanks, Michele

[happygirl]

If you can't go to Mayo, there are other Celiac specialists that may fit your needs..... www.celiacdiseasecenter.columbia.edu

The doctors at Mayo, or other Celiac specialists should be able to direct you to someone that will fit your situation. You may want to have your doctor contact them.

Best of luck and I hope that you find some answers.