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From: TX-012 on 15 Jul 2008 20:28
Well, on 06-02-08 my hemoglobin was 10.0

And on 07-09-08 it was 9.9

Despite 60,000 IU of EPO/week.

Moving from 40,000 IU to 60,000 IU of EPO a few months back did
something, but not much...

Mr. Mean Ribavirin seems to be saying "Make all the RBCs you want, I
will make them explode, ha ha!"

(Are there any long term effects from 72 weeks of hemoglobin at or
under 10?)
From: dog on 16 Jul 2008 03:28
On Tue, 15 Jul 2008 17:28:22 -0700 (PDT), TX-012 <withbacon(a)aol.com>
wrote:

>Well, on 06-02-08 my hemoglobin was 10.0
>
>And on 07-09-08 it was 9.9
>
>Despite 60,000 IU of EPO/week.
>
>Moving from 40,000 IU to 60,000 IU of EPO a few months back did
>something, but not much...
>
>Mr. Mean Ribavirin seems to be saying "Make all the RBCs you want, I
>will make them explode, ha ha!"
>
>(Are there any long term effects from 72 weeks of hemoglobin at or
>under 10?)

How much Ribavirin are you taking per day?

I had a similar problem and had to drop from 1600 mg/day to 1200 mg
and inject 40,000 iu of Procrit once a week. That brought me back up
to 12 from 9.5.

If your hemoglobin drops to 8.0 or below, you might require
hospitalization to bring it back up. The severe anemia experienced at
that low a level can cause organ damage so it's nothing to mess around
with. Your doctor should be watching the number carefully, if not,
you need to prod him/her/it to test again frequently based on your
energy level.

Always remember that no matter what the doctor thinks you've lived in
your body much longer than they have and you know when something feels
wrong or just not right. Don't blindly believe everything that falls
out of a physician's mouth. If they know what they're talking about
they don't get defensive about explaining it to you -- they'll tell
you why they're doing what and what they expect to see as a result.

Kick its butt!

--
Steve
From: TX-012 on 16 Jul 2008 03:56
On Jul 16, 12:28 am, d...(a)cat.com wrote:
> On Tue, 15 Jul 2008 17:28:22 -0700 (PDT), TX-012 <withba...(a)aol.com>
> wrote:
>
> >Well, on 06-02-08 my hemoglobin was 10.0
>
> >And on 07-09-08 it was 9.9
>
> >Despite 60,000 IU of EPO/week.
>
> >Moving from 40,000 IU to 60,000 IU of EPO a few months back did
> >something, but not much...
>
> >Mr. Mean Ribavirin seems to be saying "Make all the RBCs you want, I
> >will make them explode, ha ha!"
>
> >(Are there any long term effects from 72 weeks of hemoglobin at or
> >under 10?)
>
> How much Ribavirin are you taking per day?

1200mgs

>
> I had a similar problem and had to drop from 1600 mg/day to 1200 mg
> and inject 40,000 iu of Procrit once a week.  That brought me back up
> to 12 from 9.5.
>
> If your hemoglobin drops to 8.0 or below, you might require
> hospitalization to bring it back up.  The severe anemia experienced at
> that low a level can cause organ damage so it's nothing to mess around
> with.  Your doctor should be watching the number carefully, if not,
> you need to prod him/her/it to test again frequently based on your
> energy level.
>
> Always remember that no matter what the doctor thinks you've lived in
> your body much longer than they have and you know when something feels
> wrong or just not right.  Don't blindly believe everything that falls
> out of a physician's mouth.  If they know what they're talking about
> they don't get defensive about explaining it to you -- they'll tell
> you why they're doing what and what they expect to see as a result.

Thanks. You're right. In my case, I've been stable for a while at 9-10
(around 10 since we moved to 60,000 IU per week). It's obviously not
FUN to have a hematocrit of about 30, but I'm told it's not
"dangerous"---and I haven't yet read anything that makes me think that
info is incorrect...

I could go down on riba, and I did when we first started EPO, but I
was a slow responder anyway, and I'd rather not do anything to reduce
my chances of an SVR if I don't absolutely have to...

>
> Kick its butt!
>
> --
> Steve

Thank you!

Danny
From: dBo on 16 Jul 2008 15:53
Hmmmcan't find the entire spreadsheet at the moment but looking at the
copy I have laying here (only partial printout)
thse were my stats only one month into TX

RBC 2.85 ( 4.2 - 10.0 K/ul)
WBC



I can see that my hemoglobin was down to 9.1 and hematocrit was down
to 27.6 and THAT was only about 4 weeks into treatment....I had a hard
fast hit from TX no two ways about it - and it was not until I was 6
-7 months in that they finally decided I was "critical" and put me on
40,000

From: dBo on 16 Jul 2008 16:03
OK let me try that again without hitting any hotkeys ;)

One month into tx these were my stats

WBC 2.8 (4.2 - 10.0 K/ul)
RBC 2.85 ( 4.2 - 5.4 K/ul)
HCT 27.6 (36 - 48%)

TX hit me hard, and I dragged on that way for SIX MONTHS before they
finally decided I was "critical" as opposed to "borderline" and I
started on 40,000 EPO.The EPO did help "some" once I started it, I
could make it up a flight of stairs without resting three times ;) but
my blood levels did not return to anything near pre-tx normal levels
under the regime. They did, however, return to normal fairly quickly -
maybe 6 months post tx - after tx was over.

Lingering side effects, I don't really know - I was on the dosage for
about 4 months till tx was over. The bones stopped screaming in pain
and feeling like they were melting.

All I can tell you now is that two years ago (on tx) I was basically
dragging myself between bed and my work desk and that was it.

One year ago, I was unable to walk due to a disintegrating hip ( had
that replaced 8 months post tx)

Now - well I am doing my own automotive maintenance agian, weeding the
flower gardens, growing my own veggies, doing the laundry, cooking,
have a spring in my step again, and even managed to program my new
cell phone the last two nights - now THAT is a task that was way
beyond my Brain Fog during tx - I couldn't even figure out how to make
a call or remember my pin # for voice mail sometimes. ROFL

So I guess it DOES get better... :)
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