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

[Charlotte Cunningham-Rundles@mssm.edu]

You don¹t have to be an enrolling site to ask for data from the Registry.
We¹d encourage you to get that off the ground too, but not a requirement.

About connection between infection and Crohn¹s, that is a key point in the
discussion, perhaps.


On 4/8/11 12:33 PM, "Perez, Elena" <eperez2 at health.usf.edu> wrote:


> In our patient path is also c/w Crohn, interestingly also presented after a

> bout of fighting against colonization with C. jejuni. I am willing to help get

> the data together and write up, but I don¹t know if I have access to the

> registryŠ[my division is not yet ³enrolled² in the registry‹but this could be

> the opportunity!?]

> Elena

>  

> 

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

> [mailto:pagid-bounces at list.clinimmsoc.org] On Behalf Of Richard Wasserman

> Sent: Friday, April 08, 2011 12:29 PM

> To: pagid at list.clinimmsoc.org

> Cc: Jack Bleesing

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

>  

> I my patient the pathology clearly looks like Crohn's. The onset was more

> clearly post-infectious than is common for Crohn's I think. It may be

> something else.

> Richard

> 

> On Fri, Apr 8, 2011 at 11:14 AM, Jack Bleesing <Jack.Bleesing at cchmc.org>

> wrote:

> Question out of relative ignorance! Why the surprise? Is Crohn's purely an

> autoimmune disease in the "classical" sense? And is it really Crohn's disease

> in the classical sense?

> 

> J

> 

> -----Original Message-----

> From: "Charlotte Cunningham-Rundles at mssm.edu"

> <charlotte.cunningham-rundles at mssm.edu>

> To: PAGID <pagid at list.clinimmsoc.org>

> To: Kate <sullivak at mail.med.upenn.edu>

> 

> Sent: 4/8/2011 12:10:04 PM

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

> 

> I was surprised too --- and have a good number of older ones!  It would be a

> neat question and could be answered!

> 

> 

> On 4/8/11 12:03 PM, "Kate" <sullivak at mail.med.upenn.edu> wrote:

> 

>> > 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 <tel: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 <tel:215-590-1697>

>>>> >>> (f) 267-426-0363 <tel: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 <tel:%28972%29%20566-7788>

>>>>>> >>>> > Fax (972) 566-8837 <tel:%28972%29%20566-8837>

>>>>>> >>>> > Cell (214) 697-7211 <tel:%28214%29%20697-7211>

>>>> >>>

>>> >>

>> >

>> > Kate Sullivan, MD PhD

>> > Professor of Pediatrics

>> > ARC 1216 Immunology CHOP

>> > 3615 Civic Center Blvd.

>> > Philadelphia, PA 19104

>> > (p) 215-590-1697 <tel:215-590-1697>

>> > (f) 267-426-0363 <tel:267-426-0363>

>> >

>> >

>> >

> 

> 

> 

> 


-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://seven.pairlist.net/mailman/private/pagid/attachments/20110408/5e6c9ba6/attachment.htm>