I am trying to find information about Amyloidosis on the kidney
(protien buildup) for a friend.  She is starting on Chemo for the
treatment and she wants to know if anyone else has gone through
this treatment for this disease?  Also, did the treatment work, what
were the side effects?  Are there any other treatments for this rare
disease?  Any information would be helpful.

Jeff Templeton
Phone: 508-263-9929
fax: 508-635-9140

A lot of that depends on the cause of the Amyloidosis.  Multi-organ
amyloidosis can be caused by lots of different things : B-Cell dyscrasias
(primary amyloidosis) like multiple myeloma (most common in the US and
occurs in about 5-15% of people with multiple myeloma) and lots of
different chronic inflammatory conditions (secondary/reactive
amyloidosis), like rheumatoid arthritis and scleroderma.  You can also
get this secondary amylodiosis with some renal cell carcinomas and
Hodgkin's disease.  

With many of the chronic inflammatory conditions, if you clear of the
problem you can stop the disease (but in my limited understanding of the
disease you do not get rid of the amyloid that is already deposited in
the different organs.) You can get localized amyloidosis from some
thyroid carcinomas, pancreatic islet cell tumors and several other
endocrine problems.  You can also get it from hemodialysis (about 70% of
people on long term dialysis get it I think) and their are a few rare
hereditary forms.

All in all it is not a nice disease, with the primary amyloidosis
secondary to B-cell dyscrasias being some of the worst.  The real bad
things that it does are many times associated with the heart and kidneys.
 With the reactice AM, there is a little better outlook depending on the
ability at stoping the underlying condition.  It is also a disease that
is missed due to the strange and varied way that is presents.  Lots of
times it is only seem at autopsy.

I hope this helped.

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"EVERY MAN is                    
...like all other men         Matthew Emme

...like no other man."

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This is the disease for which Governor Bob Casey of Pennsylvania received
a heart/liver transplant at Pittsburgh.