immune deficiency (CVID) and PSC

[Guest guest]

Do any of you have an immune deficiency that is thought to have either

caused or exacerbated your PSC ? We recently found out that my son has

an immune deficiency that is for now thought to be CVID...that dx may

be refined a little soon...He also has short bowel- 3/4 of his small

bowel & part of his colon removed and is missing his ileocal valve

(very important to help prevent major problems with small bowel

bacterial overgrowth) With CVID it is common to have problems with

bacterial overgrowth but my son has had MAJOR problems with it because

of short bowel motility issues and no ileocecal valve and now we have

found he has the immune deficiency also. Autoimmune issues are

apparently common with immune defficency too...still learning about

this newest specialty - immunology.

Thanks in advance for any info you may have on how immune deficiencies

interact with PSC and how best to monitor and treat the problem.

He is currently on xifaxan daily and has recently stopped taking daily

IV gentamicin orally (thru his g-tube) and has taken cipro for months

at a time too. He is at high risk for ascending cholangitis because he

is 'wide open' due to 2 huge cuts/openings -sphincterotomies done. He

had many stents replaced very frequently for CBD strictures and kept

getting obstructed despite the stents for several years- that's why

they did the big opening during his last sphincterotomy.

He would have had a roux en y when he initially started getting the

obstructing CBD stones, but because he has no 'spare' small intestines

that wasn't an option for him.

So he is kind a unique position - especially for a 10 year old as far

as what to do to prevent more issues for his liver and to help slow

down progression of his PSC.

Lori

lucky mom to wonderfully wild 10 year old triplets

[Guest guest]

I'm not aware of any causal relationships, but it's not unlikely that you may

have one or more. In my case, I started with UC (1977), then asthma (1989),

degenerative vertebra (1996), eczema (1998) and most recently, PSC (2000). All

of these are thought to be auto-immune diseases.

There's definitely a relationship between UC and PSC (have UC, increased

probability of PSC), but I don't know of any relationship between the others.

I'm clinically asymptomatic for all but asthma right now, and that's currently

quiescent (knock on wood). Many of us have more than UC or PSC (Sjogren's,

AIH, ankylosing spondilities, crohns, lupus, to name a few).

You may find this site to be useful - http://www.aarda.org/, and this article

http://www.aarda.org/infocus_article.php?ID=28.

Arne

---- wildwildtrips wrote:

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Do any of you have an immune deficiency that is thought to have either

caused or exacerbated your PSC ?...

Lori

lucky mom to wonderfully wild 10 year old triplets