[CIS-PAGID] Peripheral neuropathy in CVID

[Richard Wasserman]

The long IGSC experience in Sweden and UK without reports of peripheral
neuropathy suggests that if there is a relationship, it is to the drug, not
the route. Has anyone seen peripheral neuropathy with Privigen?

IBD related to Vivaglobin is even harder to explain. Did your patient
receive any immunomodulatory or anti-inflammatory therapy when the
diagnosis of IBD was made?

Richard Wasserman
Dallas

On Wed, Apr 18, 2012 at 6:19 PM, Thomas Issekutz <Thomas.Issekutz at dal.ca>wrote:


>

> I have also had a 15 year old girl with CVID who did very well on IVIG.

> She had been extremely well without any complications for many years, but

> wished to try SCIG.  She was switched to sc Vivaglobin but about six weeks

> later had some intermittent nausea, occasional vomiting, and progressive

> abdominal pain.  Eventually she decreased her intake and lost substantial

> weight. She was started back on IVIG and when scoped had extensive

> inflammatory bowel disease. She began to improve over a few weeks after the

> IVIG and was also placed on an alimental diet. She regained her weight

> after about five months. She is back or a regular diet on IVIG, but

> continues to have an elevated CRP. She wants to go back to SCIG. In light

> of the discussion here, sounds like that is not a good idea. Thank you for

> this.

>

> Thomas Issekutz MD

> Professor and Head,

> Division of Immunology

> Department of Pediatrics

> IWK Health Centre

> Dalhousie University

> Halifax, NS CANADA

> B3K6R8

> Ph 902-470-8933

>

>

>

>

> Quoting "Nelson, Robert P Jr" <ronelson at iupui.edu>:

>

>  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>[

>> 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:J**

>>> Church at chla.usc.edu <JChurch at chla.usc.edu>>>

>>> Reply-To: pagid listserve <pagid at list.clinimmsoc.org<**mailto:

>>> pagid at list.clinimmsoc.**org <pagid at list.clinimmsoc.org>>>

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

>>> pagid at list.clinimmsoc.**org <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<pagid-bounces at list.clinimmsoc.org>

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

>>> [mailto:pagid-bounces at list.**clinimmsoc.org<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<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:Hlede**rm1 at jhmi.edu <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

>>

>>

>>

>>

>>

>

>

>



-- 
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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