Re: fatigue and body aches-

[Guest guest]

hi -

I am curious if you think IVIG treatments can be effective in treating PSC ? My

son Braden has been getting IVIG infusions for @ 2 years now and is also on

vancocin (oral-capsules of vancomycin) and has been quite stable with his PSC. I

posted some info on our immunologist and some innovative treatment they are

doing at his office. I am curious what your opinion is on the immune treatments.

http://health.groups.yahoo.com/group//message/109320

Lori

lucky mom blessed with triplets

>

> > I was wondering if anyone knows the " why " behind the fatigue.

> > Jeannie

>

[Guest guest]

hi -

I am curious if you think IVIG treatments can be effective in treating PSC ? My

son Braden has been getting IVIG infusions for @ 2 years now and is also on

vancocin (oral-capsules of vancomycin) and has been quite stable with his PSC. I

posted some info on our immunologist and some innovative treatment they are

doing at his office. I am curious what your opinion is on the immune treatments.

http://health.groups.yahoo.com/group//message/109320

Lori

lucky mom blessed with triplets

>

> > I was wondering if anyone knows the " why " behind the fatigue.

> > Jeannie

>

[Guest guest]

Dear Lori;

I did read your message (# 109320) on the immune treatments, and your revelation

that you and your son have both been diagnosed with ataxia

telangiectasia; I guess that begins to explain the curious Ig deficiencies that

you have been reporting, and that I have been trying to interpret [with not much

luck I might add!] (see e.g. message # 104449).

Staples ER, McDermott EM, Reiman A, Byrd PJ, Ritchie S, AM, Davies EG

(2008) Immunodeficiency in ataxia telangiectasia is correlated strongly with the

presence of two null mutations in the ataxia telangiectasia mutated gene. Clin.

Exp. Immunol. 153: 214-220.

PMID: 18505428.

http://www.ncbi.nlm.nih.gov/pubmed/18505428

Without trying to write a thesis on whether I think IVIG (intravenous

immunoglobin) treatments can be effective in PSC, I'd like to say simply that

it's really not been tested yet, but might be worth a try? To justify this very

bland statement, I'd like to encourage you to do some searches on PubMed

(http://www.ncbi.nlm.nih.gov/pubmed/) with the following terms, and look at the

results obtained:

Search term: IVIG and immunodeficiency

1218 results

Search term: IVIG and autoimmune

1411 results

Search term: IVIG and inflammatory bowel disease

30 results

Search term: IVIG and Crohn's disease

19 results

Search term: IVIG and ulcerative colitis

12 results

Search term: IVIG and sclerosing cholangitis

3 results (all related to sclerosing cholangitis associated with hyper-IgM

syndrome)

Search term: IVIG and primary sclerosing cholangitis

2 results (both represented in the previous search results)

When it comes to primary sclerosing cholangitis, the results recovered actually

catch the terms " primary " immunodeficiency, and " sclerosing cholangitis " in the

abstracts, so strictly there are 0 results on IVIG and PSC!

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

>

> hi -

> I am curious if you think IVIG treatments can be effective in treating PSC ?

[Guest guest]

-

You are such a blessing- thank you for your thoughtful responses- I really

appreciate all the time effort and heart you put into all of us here- especially

for my unusual questions !

The ataxia telangiectasia diagnosis for me and for Braden makes a lot of sense

unfortunately, but I am encouraged by the attenuated form that I have that can

be less devastating and hopeful that with this knowledge for Braden comes the

power to best treat him.

Likely none of our specifics apply to the broader group here but it seems

hopeful, to me at least, that something we discover may help others here too.

Thanks again for all that you do and for the search tips !!!

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

Braden has short bowel syndrome, ataxia telangiectasia, PSC, FAP

but is living life to the fullest and keeping us on our toes with his antics !

> >

> > hi -

> > I am curious if you think IVIG treatments can be effective in treating PSC ?

>

[Guest guest]

-

You are such a blessing- thank you for your thoughtful responses- I really

appreciate all the time effort and heart you put into all of us here- especially

for my unusual questions !

The ataxia telangiectasia diagnosis for me and for Braden makes a lot of sense

unfortunately, but I am encouraged by the attenuated form that I have that can

be less devastating and hopeful that with this knowledge for Braden comes the

power to best treat him.

Likely none of our specifics apply to the broader group here but it seems

hopeful, to me at least, that something we discover may help others here too.

Thanks again for all that you do and for the search tips !!!

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

Braden has short bowel syndrome, ataxia telangiectasia, PSC, FAP

but is living life to the fullest and keeping us on our toes with his antics !

> >

> > hi -

> > I am curious if you think IVIG treatments can be effective in treating PSC ?

>

[Guest guest]

-

You are such a blessing- thank you for your thoughtful responses- I really

appreciate all the time effort and heart you put into all of us here- especially

for my unusual questions !

The ataxia telangiectasia diagnosis for me and for Braden makes a lot of sense

unfortunately, but I am encouraged by the attenuated form that I have that can

be less devastating and hopeful that with this knowledge for Braden comes the

power to best treat him.

Likely none of our specifics apply to the broader group here but it seems

hopeful, to me at least, that something we discover may help others here too.

Thanks again for all that you do and for the search tips !!!

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

Braden has short bowel syndrome, ataxia telangiectasia, PSC, FAP

but is living life to the fullest and keeping us on our toes with his antics !

> >

> > hi -

> > I am curious if you think IVIG treatments can be effective in treating PSC ?

>