[CIS-PAGID] Duration of treatment for Crohn's in XLA

[Sullivan, Kathleen]

I don't know if you are looking for research projects but you could easily query the USIDNET registry and add all the patients that have been discussed on PAGID.  Maybe I was the only one surprised but I suspect not.

Kate
On Apr 8, 2011, at 11:59 AM, Brian P Vickery wrote:


> Kate, I was surprised to find autoimmunity in two of our XLA patients at Duke. I assumed the care of two young men, one in his early twenties, and one in his thirties, both of whom have XLA and ESRD due to an a immune-mediated kidney lesion like FSGS but with nonspecific pathology. The older one also had a very aggressive form of granulomatous Crohn's-like gut inflammation which had been treated with surgical resection in the past and more recently TNF inhibition. 

> 

> FWIW. 

> ___________________

> Brian Vickery, MD

> Division of Pediatric Allergy & Immunology

> Duke University Medical Center

> DUMC Box 2644, Durham NC 27710

> 919.681.2949

> 

> "Email should NOT be used for urgent medical issues. The information in this electronic mail is sensitive, protected information intended only for the addressee(s). Any other person, including anyone who believes he/she might have received it due to an addressing error, is requested to notify the sender immediately by return electronic mail, and to delete it without further reading or retention. The information is not to be forwarded to or shared unless in compliance with Duke Medicine policies on confidentiality and/or with the approval of the sender."

> 

> -----pagid-bounces at list.clinimmsoc.org wrote: -----

> 

> To: pagid at list.clinimmsoc.org

> From: Kate Sullivan <sullivak at mail.med.upenn.edu>

> Sent by: pagid-bounces at list.clinimmsoc.org

> Date: 04/06/2011 05:54PM

> Subject: Re: [CIS-PAGID] Duration of treatment for Crohn's in XLA

> 

> I don't know the answer to your question and was surprised by the question.  I think of XLA as being more free from autoimmune disease than other immune deficiencies.  I wonder how common this is and wonder if this is perhaps a topic for some research investigation.

> 

> Kate

> Kate Sullivan, MD PhD

> Professor of Pediatrics

> ARC 1216 Immunology CHOP

> 3615 Civic Center Blvd.

> Philadelphia, PA 19104

> (p) 215-590-1697

> (f) 267-426-0363

> 

> 

> On Apr 6, 2011, at 5:27 PM, Richard Wasserman wrote:

> 

> > I have cared for this 23yo with XLA (BTK mutation confirmed) who has a ten year history of Crohn's. He has been maintained on azathioprine and has never been exposed to a biologic response modifier. When azathioprine was weaned about five years ago there was relapse. He has been doing very well since his remission was reinduced with prednisone. He now asks about stopping azathioprine. He has never had any other autoimmune diathases. Is there any experience with discontinuing treatment in XLA patients with Crohn's?

> > Thanks,

> > Richard Wasserman

> > Dallas

> > 

> > -- 

> > Richard L. Wasserman, MD, PhD

> > DallasAllergyImmunology

> > 7777 Forest Lane, Suite B-332

> > Dallas, Texas 75230

> > Office (972) 566-7788

> > Fax (972) 566-8837

> > Cell (214) 697-7211

> 

> 


Kate Sullivan, MD PhD
Professor of Pediatrics
ARC 1216 Immunology CHOP
3615 Civic Center Blvd.
Philadelphia, PA 19104
(p) 215-590-1697
(f) 267-426-0363


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