[CIS-PAGID] Duration of treatment for Crohn's in XLA
Perez, Elena
eperez2 at health.usf.edu
Fri Apr 8 12:33:34 EDT 2011
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 don't know if I have access to the registry...[my division is not yet "enrolled" 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<mailto: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<mailto:Cunningham-Rundles at mssm.edu>" <charlotte.cunningham-rundles at mssm.edu<mailto:charlotte.cunningham-rundles at mssm.edu>>
To: PAGID <pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>>
To: Kate <sullivak at mail.med.upenn.edu<mailto: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<mailto: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
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>> and/or with the approval of the sender."
>>
>> -----pagid-bounces at list.clinimmsoc.org<mailto:pagid-bounces at list.clinimmsoc.org> wrote: -----
>>
>>> To: pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>
>>> From: Kate Sullivan <sullivak at mail.med.upenn.edu<mailto:sullivak at mail.med.upenn.edu>>
>>> Sent by: pagid-bounces at list.clinimmsoc.org<mailto: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>
>
>
>
--
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
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