[CIS-PAGID] Peripheral neuropathy in CVID

[Patsy Giclas]

Just curious,

Has anyone looked to see if there was complement activation in these
patients at the time of the onset of symptoms?

Patsy

---------------------------------------------------------
Patricia C. Giclas. Ph.D.
Director, Complement Laboratory
Advanced Diagnostic Laboratories
Professor, Pediatrics Dept,  Allergy and Immunology Division
National Jewish Health
1400 Jackson St., Denver, CO 80206 U.S.A.

Office: D409, Neustadt Building
Phone: 303-398-1217
Fax: 303-270-2128
Email: giclasp at njhealth.org



> From: "R.O. Nelson" <ronelson at iupui.edu>

> Reply-To: "pagid at list.clinimmsoc.org" <pagid at list.clinimmsoc.org>

> Date: Wed, 18 Apr 2012 15:06:45 -0600

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

> Subject: Re: [CIS-PAGID] Peripheral neuropathy in CVID

> 

> Agree wholeheartedly with Kate. I haven't seen this but will look more closely

> thanks to these communications.  Bob

> ________________________________________

> From: pagid-bounces at list.clinimmsoc.org [pagid-bounces at list.clinimmsoc.org] on

> behalf of Sullivan, Kathleen [sullivak at mail.med.upenn.edu]

> Sent: Wednesday, April 18, 2012 4:49 PM

> To: pagid at list.clinimmsoc.org

> Subject: Re: [CIS-PAGID] Peripheral neuropathy in CVID

> 

> This discussion has me slightly worried.  I have not seen this but I would

> request of those who have to put their data together and report to CSL, write

> the cases up and perhaps think of querying USIDNET to see if there are other

> cases.

> 

> Kate

> On Apr 18, 2012, at 4:29 PM, Riedl, Marc wrote:

> 

>> I have an adult CVID patient who developed worsening of pre-existing

>> idiopathic peripheral neuropathy when switching from IVIG to SQ Hizentra.

>> In addition, her pre-existing gastrointestinal malabsorption (also not

>> well-defined despite extensive GI evaluation) worsened on SQ treatment.  She

>> has recently switched back to IVIG given these developments, but too early to

>> judge whether this move will improve her conditions back to "baseline".

>> Given the concurrent worsening of these "CVID-associated symptoms" my

>> impression is that there is some beneficial effect of the higher peak levels

>> achieved with IVIG that we're unable to attain with SQ, rather than this

>> being a product-specific side effect.  If a patient is willing (mine was not)

>> would be if interest to switch to a different SQ product to assess effect.

>> 

>> Best,

>> 

>> Marc

>> 

>> Marc Riedl, M.D., M.S.

>> Associate Professor of Medicine

>> Section Head, Clinical Immunology and Allergy

>> UCLA - David Geffen School of Medicine

>> 10833 Le Conte Ave, 37-131 CHS

>> Los Angeles, CA  90095-1680

>> Tel 310.206.4345  Fax 310.267.009

>> 

>> 

>> From: <Church>, Joseph <JChurch at chla.usc.edu<mailto:JChurch at chla.usc.edu>>

>> Reply-To: pagid listserve

>> <pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>>

>> To: pagid listserve

>> <pagid at list.clinimmsoc.org<mailto:pagid at list.clinimmsoc.org>>

>> Subject: Re: [CIS-PAGID] Peripheral neuropathy in CVID

>> 

>> I follow a 12yo boy who had a similar experience when switched from IVIG to

>> SC Hizentra.  His peripheral neuropathy (diagnosed by Neurology here) affects

>> an area around the infusion sites and radiates to his scrotum.  These

>> symptoms have persisted despite the switch back to IVIG.

>> 

>> The patient also has symptoms consistent with a mild form of mitochondrial

>> disorder and has been diagnosed by our Genetics group as such.  Pain

>> syndromes are often part of the mito picture, so I don't know if his

>> neuropathy is related to mitochondrial dysfunction or the Hizentra infusions,

>> both or neither.

>> 

>> Joe Church

>> Children's Hospital Los Angeles

>> 

>> From: 

>> pagid-bounces at list.clinimmsoc.org<mailto:pagid-bounces at list.clinimmsoc.org>

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

>> Sent: Wednesday, April 18, 2012 12:32 PM

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

>> Subject: [CIS-PAGID] Peripheral neuropathy in CVID

>> 

>> I have an adult CVID patient who has developed an idiopathic peripheral

>> neuropathy while on Hizentra.  My first reaction was to think that this was

>> merely a coincidence and not cause and effect.  However, yesterday I received

>> a call about an out-of-town patient who had CVID, had recently been switched

>> from IVIG to Hizentra and then  developed parasthesias.

>> 

>> Do any of you have patients with similar histories?

>> 

>> Howard

>> 

>> 

>> Howard M. Lederman, M.D., Ph.D.

>> Professor of Pediatrics, Medicine and Pathology Division of Pediatric Allergy

>> and Immunology Johns Hopkins Hospital - CMSC 1102 600 N. Wolfe Street

>> Baltimore, MD 21287-3923

>> Phone: 410-955-5883

>> Fax: 410-955-0229

>> Email: Hlederm1 at jhmi.edu<mailto:Hlederm1 at jhmi.edu>

>> 

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> 

> 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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