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Medical Forum / Diseases and Disorders / Lupus / May 2004

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Hoping for some direction.........

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David Spiro - 28 Apr 2004 04:56 GMT
I was hoping that this group might be able to point me in the right
direction with regards to information regarding stem cell transplants. I
know that there have been some experimental and successful treatments in
this area. I have a good friend, that while she does not have lupus, does
have autoimmune hepatitis. She cannot tolerate the standard
immunosuppressive treatments for the disease, as they have caused brain
lesions, amongst other things, and was recently removed from the liver
transplant list at her center. On top of this, through a series of events,
it appears as though her autoimmune condition has spread to her esophagus,
and is causing major eating disruptions. There is no known treatment, and
her docs are consulting with docs in Chicago, where they have done several
stem cell transplants that have reversed lupus in about 44 patients, as I
understand. She is a dear friend and I am trying to research this as much as
possible for her. They have also discussed the possibility of treating her
with Remicade.

If anyone has information regarding stem cell transplants and autoimmune
disease, I would appreciate it. I have been to the National Bone Marrow
donor site, but am looking into all resources. BTW, I am a former NYC
paramedic and organ procurement coordinator, so don't be shy in using
medical terminology with me!  ;-)

--
David Spiro
Liver Transplant Recipient - 8/1/97
RECYCLE YOURSELF! - BE AN ORGAN DONOR
"This country can lay claim to no distinct criminal class, excepting of
course, Congress."
                         Mark Twain
J - 29 Apr 2004 10:10 GMT
> I was hoping that this group might be able to point me in the right
> direction with regards to information regarding stem cell transplants. I
[quoted text clipped - 25 lines]
> course, Congress."
>                           Mark Twain

Hello David,
Welcome to alt.support.lupus
Bruce ("blader") often answers about stem cell, so I put it in the subject line,
in case he watches for certain subjects.

I'm wondering why she was turned down for transplant - would not survive the
surgery or ?

Janers has had several if not more "stretching" type procedures for her
esophagus. Esophageal Dilatation,
She would have to tell you more about that (procedure names, anesthetic or not),
satisfaction with/complications/risks, she e-mailed me quite a bit, but I lost
her specific information.
There's some here http://www.sclerodermasupport.com/medical/involvement/gastro/

So hang in there and let's see if the others reply.
Best,
J
David Spiro - 30 Apr 2004 02:46 GMT
> I'm wondering why she was turned down for transplant - would not survive the
> surgery or ?

She has Autoimmune Hepatitis. (AIH). It is initially treated with Imuran,
and prednisone. Imuran, as you may known is an immunosuppressant, and a type
of anti-rejection drug, albeit, a much older one. While it doesn't stop the
disease, it does slow its progress considerably. However, my friend began to
develop very nasty side effects from them, especially the prednisone, and
this is why they de-listed her. you need to take pred following a
transplant, and in her case, she cannot tolerate these anti-rejection meds,
as they caused brain lesions, amongst other things.

--
David Spiro
Liver Transplant Recipient - 8/1/97
RECYCLE YOURSELF! - BE AN ORGAN DONOR
"This country can lay claim to no distinct criminal class, excepting of
course, Congress."
                         Mark Twain
J - 04 May 2004 12:47 GMT
> > I'm wondering why she was turned down for transplant - would not survive the
>
[quoted text clipped - 8 lines]
> transplant, and in her case, she cannot tolerate these anti-rejection meds,
> as they caused brain lesions, amongst other things.

Thanks for explaining David.
Perhpas if you repost (or would e-mail Janers), she'll explain what procedures
she had for the esophagus...
Janers <rojakort at bright dot net> fix the obvious

Meantime, all my best to you and the person discussed.
J
J - 29 Apr 2004 10:19 GMT
> I was hoping that this group might be able to point me in the right
> direction with regards to information regarding stem cell transplants. I
[quoted text clipped - 25 lines]
> course, Congress."
>                           Mark Twain

Hi David,
Grace isn't here right now but she had chemo &  stem cell transplant for Lupus
and CNS Lymphoma and as far as I know her liver was fine.
It was a really rough go for her for months (6?) so I'm wondering if your friend
would survive it?

In any event, I think one of these blader posts shows how to contact Bruce
http://tinyurl.com/2ojj5
HTH
J
 
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