Hello all~
   I wanted to let you all know that I am still around :) I haven't had much access to the internet in quite a while, but when I'm able I read all of the postings.  I'm sorry I didn't get to this sooner!  I did receive Hemopure 9 years ago.  It was on a compassionate use basis.  Last I heard Biopure was no longer able to provide Hemopure, even for compassionate use.  Also, the product worked wonders for me, but isn't really a solution for Evan's.  They used it for me because my body was destroying blood cells so fast that transfusions were completely ineffective. They did a spleenectomy, plasmapheresis, Cytoxin, and Cyclosporin in a two week period of time, but it was going to take two weeks for these treatments to kick in and they were pretty certain I wouldn't live through that time.  Hemopure was used as a bridge to get me through those two weeks.  It didn't affect my Evan's syndrome at all, it just kept me alive long enough for the other stuff to start working.  Not the best news, I know. 
  On a different subject~ In October I had my right shoulder replaced.  I had avascular necrosis, which means bone death, basically.  There is a lack of blood flow to a part of the bone, and it begins to die.  Excrutiatingly painful!  I bring it up because the doctors are fairly certain this happened because of all the prednisone I've had, and I know you all can relate!  Apparently it's possible for this to happen in any of the major joints in my body.  Even though I haven't had prednisone in about 6 or 7 years.  So, if any of you develop severe joint pain get some xrays!
   Wishing everyone health and happiness~
                   Emily

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To: EvansSyndrome@yahoogroups.com
From: nigel040102@...
Date: Tue, 15 Apr 2008 00:01:01 +0800

Subject: Re: [EvansSyndrome] Re: Any more treatment Options?

Hi, Debbie!

Thanks for the info. Perhaps I will try retrieving the e-mails sent in the group years ago about the Hemopure. My physicians have never tried it before. I live in New Zealand. And the only reason my oncologist knows about it is in medical conferences. We will try to contact the manufacturer. But if ever, we will need approval from the Ministry of Health and then US FDA before we can get to the company.

So far, everything we have tried failed to raise my blood counts. Steroids, IVIG and Rituxan have all worked miracles for me before, but this time, they aren't working their wonders. We really cannot shake this flare.

Thanks again!

On Mon, Apr 14, 2008 at 11:44 PM, Debra Adamo <sdkkadamo@...> wrote:

Hi Niguel,

 

Betty has a great memory!  Yes, the female (I believe her name is Emily), was given Hemopure.  It was approved on a "compassionate use" program through the manufacturer.

I know that's it, because I remember her posting about cow's blood.  Emily was in an extremely severe crisis, her doctors contacted the mfg and were given "compassionate use" approval.  As Betty mentioned, Emily survived her crisis, got married and had a baby.  I don't recall seeing any postings from her in several years.  I hope this information helps!

 

Debbie

(47 w/Evans)

nigel040102 <nigel040102@...> wrote:

Hi, Betty!

Thanks for the reply.

I would very much be interested on any information anyone can give me about using substitute blood. One of my oncologists knows of Hemopure. Is that it? But my oncologist says its use is still struggling to gain marketing permission. It is not approved here as far as the effectiveness, safety and reliability. But as I told all my physicians, at this point, I will be willing to give anything a try. I will look into it. Does anyone know about this 'substitute blood?' Any information will be appreciated. Thanks.

On Mon, Apr 14, 2008 at 9:40 PM, <bettanmic@...> wrote:

Dear Niguel,

 

    Sorry to hear of your current severe flare up, my son, Paul who turned 21 last week, had some very low counts in past years and he tried all of the same options mentioned except having his spleen removed. I do remember when I first found this site some 9 years ago, there was a gal who posted that she had received some subsitute blood, made by  a company in Cambridge, Mass.  She was out of the service and lived on the West coast and had to get special permission from the FDA? Anyways it seem to do the trick for her at the time and she posted some years later that she got married and had a baby.  Does anyone recall that? 

I wish you quick help in finding a solution and we are all praying for you.

 

Betty Mom to Paul with Evans+

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--
Nigel
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Sitting still, listening to the distant humming of the world.
The world isn't as bad as we think it is, and it isn't as flawless as we want it to be; yet we never seem to tire of endlessly making sense of how complex it is. The universe is but a mere synthesis of our efforts to make it a better or worse place to be in.
We clearly do not know it well enough because somehow, it constantly surprises us.

--
Nigel
--------------------------------------------------
Sitting still, listening to the distant humming of the world.
The world isn't as bad as we think it is, and it isn't as flawless as we want it to be; yet we never seem to tire of endlessly making sense of how complex it is. The universe is but a mere synthesis of our efforts to make it a better or worse place to be in.
We clearly do not know it well enough because somehow, it constantly surprises us.

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