procrit/dangers w/tx

[kcrandy]

actually i have a couple of question.  the first is about procrit and tx.

a little about myself and my tx.  i have been on tx for 52 weeks 11-15-2007.
i am a geno 1-a 3-4 stge cirrosis and have been und for 36 of those 52weeks.
i take pgys at beginning 180mics+1200 riba and at 42 weeks was lowered to 90mic and 1200riba due to low platelettes (mid 20's) and hgl's from 8 to 10 and placed on procrit before this time because of the low hgl readings.  on two seperate ocassions while on procrit my hgl went up to 14 the first time and today it jumped up to 14.9. i say  it jumped because my hgl's were not rising enough so i was told to take 40mg once week to 40mg twice a week, and now i get the 14.9 reading.
the reason i was reduced in the beginning of pgys was because my platlettes were getting into the mid to low 20's. and my doc did not want to give me anymore nupegeon so he lowered my pgys.  
now my platelettes are running at low to mid 30's some times up to 40.

the reason i ask about procrit and tx is i was concerned about the hgl's as well and when i did some research and saw i the group threads that aranesp was an option for hgl's. well needless to say when i researched them both i see that this drug can be potentially dangerous when hgl levels reach above the prescribed 10-12hgl the drugs is to be used for ..

in my research i found on the fda web site that either drug aranesp or procrit are pretty dangerous meds if not monitored religiously.

has anyone seen or heard of such issues concerning these drugs.

if there is such dangers using this type of drug is there an alternative  or a supplement or another drug that could be used to raise hgl's.

the reason i am asking this as well is that the side effects of dizziness leg pain with no swelling lightheadedness shortness of breath neseau rash etc are all starting to manifest on this old body of mine and i was just a lot concerned enough to tell  you all about it and what some of you  might think

the other question i have is should i take a flu shot while i am goin thru all of this or should i wait until i have more answers to my question above.

thx's everyone!  : O )

[kcmike]

hey randy, what your referring to is the "Black Box" Warning.  True, it warns against the potential of I believe heart complications.  It is intended for use to bring you back up to only 12.  If your hgb is on the rise docs are told to back off so as not go above 12.  That said when this warning came out in late 2006 much was discussed here on the forum.  Maybe someone can provide the dates or a link to some of those discussions.

About the flu shot some have said why not the side effects aren't as bad as your weekly dose of Peg!
I would discuss with your doc if you have any doubts.

kcmike

[kcmike]

oh yah, 40k to 80k units or more with various frequencies from patient to patient and doctor to doctor
it's quite the controversy.  The main thing is to be able to get it when necessary and not have to drop your copeg dose.  It has a delayed effect and that needs to be remembered both when hgb rising or falling.

did you happen to see ejoli's post about relapsing?  Tough break, but she sounds upbeat about accepting it and moving on.

mike  

[alagirl]

Sometimes it takes a bit of adjusting to learn how to keep your hgb in a healthy range with getting your blood too "rich."  Backing off the dosage or adjusting the number of days between doses are both ways to control hgb (under your doc's supervision and care of course).

Personally, I don't think that one jump to 14.9 is something to be horribly alarmed about, but certainly I would think about backing off a tad to keep the range a bit lower.  If you will ask for a reticulocyte count with your cbc's, the reticulocytes are basically your baby blood cells.  If the number is high, you can tell that you are making many new blood cells already and you may not need quite as much procrit.  If the number of reticulocytes is low, that can sometimes be an indicator for increased procrit.  How to use this value in monitoring is something you may want to discuss with your physician.

[merryBe]

you are right, the sides are scary...stokes, clots, on and on....which would argue for not too drastic of dosing (unless you are alagirl) unless there is no alternative due to other factors.
and yes the body can develop dependance, but as with INF eventually things usually return to normal, although what the harm would be of backing off slowly at the end of tx to allow bodies time to readjust.....well...just lack of thought/care of ins. mostly, and docs to some degree..

I think the other question is, how well will you be with no platelets, no hemoglobin, no oxygen?
the fact that it is not a perfect drug, and certainly not if it builds up too fast, does not mean it isn't the best choice in a bad situation.

[kcrandy]

thanks everyone for your responses.

mike i do hope that a link is provided concerning pros cons of procrit aranesp drugs.  i will be watching for it. also after 12 weeks of red pgys my last viral load test is still und.  so my doc is keeping me at the 90mic because my platelettes are stabilizing at the 39's range. my hep doc is doing this extended tx to increase my odds of not having a relapse.  


alagirl thank you.  i think the issue with myself is the nurse practitioner and not my hep doc.  at the veterans hospitals tx is handled by a gi doc but in my case i am being treated by a hep specialist here in kc that oversees the two nurse practitioners that tx the vets. the issue i have is that in some cases i will have to be seen by one or the other nuse so i believe communication is lacking and therefore i wind up with the two 14hgb and 14.9 hgb's on two different occasions. so i try to educate myself as much as possible to not only keep myself informed but to make sure i am getting the best tx possible from va, therefore question about procrit and aranesp side affects and possible alternate tx for low hgb readings are the reason i ask for your alls advice.
also the reuc count you speak of was running low in the beginning but my last test showed that the  little jr's were starting to appear again and are at normal as of thur. 11-15-07. : O )  

merrybe thank you.  i pondered that thought of no oxy and the more rational side of my brain fogged mind agrees with you.  i have stated from the very beginning of my tx to all the people whos care i am under that unless i am on @#$&% bed i do not want to stop tx.  


thank you all. i have a strong belief in a higher power and i believe he uses people to speak with me for help and guidance as well as doing my own works as well.  i have defeated the odds to this day and look forward to the day when i can tell you all i am rid of this virus for good and i can hopefully be helpful to someone else who is facing this virus or who does not even know they have it!!!!!

26 more weeks left and counting.

[kcmike]

Sorry about the ejoli comment I confused you with kujerry who is in Wichita as is ejoli.  

Pegysys effects your wbc/anc, copeg/riba effects your hgb.  I'm not sure but I don't think Peg  effects your platelets, again it's the riba (I think).  I sure hope some of the pro's speak up and help.  

mike

[mikesimon]

Interferon suppresses bone marrow and is the cause of decreased platelet count.
See: http://bloodjournal.hematologylibrary.org/cgi/content/abstract/77/10/2103
"It is concluded that alpha-IFN reduces platelet production rate and the peripheral platelet count in ET mainly through an anti-proliferative action on the megakaryocytes and to a considerably lesser degree by a shortening of platelet MLS."
Mike

[alagirl]

and yes the body can develop dependance, but as with INF eventually things usually return to normal
----------------------------------------------------
hey guys, I do NOT want to minimize this VERY rare but bad side effect of procrit.  As I said, it is very rare, HOWEVER, in every I don't know how many cases, the body builds up antibodies to epo (erythropoeitin) when taking procrit, or a generic procrit like epogen.  WHEN this happens, the body basically fights the erythropoeitin you put into it and cannot use it to make red blood cells.

Ok, you say, so I'll just stop taking procrit.  No biggie.  Well, here's the biggie.  Since synthetic erythropoeitin in the form of procrit or epogen is basically a mirror of your body's natural erythropoeitin, this means that your body also fights it's OWN erythropoeitin.  And THIS means that you can no longer make any red blood cells on your own.  Ever again.  Unless for some reason your body gets rid of some of the antibodies.  There was a black box warning that came out about this from Johnson and Johnson about three? years ago.

Some of the warning signs of this are if your body is using procrit to make red blood cells like a champ and then all of a sudden the procrit starts being much less effective.  IF this happens, your physician can call Johnson and Johnson and they will (believe me) expedite forthwith a testing kit to your physician to test your blood (because normal labs don't have this test, which is very complex) for these particular antibodies.  This will tell you if you are ok or not.  If you are ok, you can continue the procrit.  If not, you of course must stop immediately.  People with severe antibodies to procrit are sometimes dependent on blood transfusions for the rest of their lives.  This is not good because repeated blood transfusions deposit a great deal of iron in your organs and lead to end organ damage.  (this is one of the reasons hemophiliacs have such reduced life expectancy).

All of that said, this is an extremely rare side effect, AND additionally, there are varying levels of it.  It is even more rare that you have so many antibodies that you'd be completely transfusion dependent.  Any change though in the amount that you are sensitive to the procrit is a good enough reason for your doctor to call Jonson and Johnson and ask for the test.  They are more than happy to do it for you and you don't have to be concerned they will dump you from procrit.  I had it early on in my procrit treatment, came out just fine, and as you can see, I am still taking it lo these many years hence.  Always better to be safe than sorry though.

[alagirl]

alagirl thank you.  i think the issue with myself is the nurse practitioner and not my hep doc
------------------------------------
I have the most annoying nurse prac in the world, but a lovely and sweet hep doc.  She's an idiot and a jerk and since I have pared my life down to dealing with neither of the above on tx I don't deal with her.  I am pretty good at going around the speed bumps at this point in my life. lol

She told me I could have viral loads only on certain days, so I called back and set up monthly visits with my hep doc and on my first monthly visit I got him to write orders for the exact days I wanted viral loads, and... ya know, for every other thing I wanted.  I usually write down everything I want to ask about and everything I want before I go in to my apt and give the doc a copy at the beginning of the visit.  I try to make it short (hate to overwhelm the poor guy) lol

But it might say something like -

Viral loads - sensitivity to at least 10:

4 weeks
8 weeks
12 weeks

Referal to hematologist:

(Prefer Mahn Dang as hema)
Will do 2x Week Anemia b profile w/retic count
and fax to you and hema
Will notify you asap if hgb goes below 8

Prescriptions Needed:

Zofran sublingual 8 mg
Phenergan Tabs 50mg
Phenergan suppositories 25mg

And then I do a similar list with my hematologist only dealing with my procrit and my anemia issues.  Sometimes though he and I deal over the phone, so he doesn't always get a list LOL

[Xenigma]

I've learned alot from your posts re:Procrit.  
Scary stuff but, better than lowering the Riba.
I'll do shot #3 of it Monday evening and I hope the sides get better.
I'm still learning to get all the meds without the air bubbles out of the bottle.
You are a pro at doing it - I'll get there but maybe I should ask for a different syringe.
I use the B-D 1ml 27g 1/2.  
I remember you writing that you use a certain one you like, which one is that?
Is it different than the one ordered for me?
Thanks in advance...
enigma

[alagirl]

platelets do get suppressed as has been mentioned by the interferon, but so do red blood cells.

So... IF your platelets are suppressed by the INF, it is possible your rbc's are affected by them too, hate to say it. :(  Typically its the riba, but not always.  Of course, IF your retic's are ok, that argues more against the bone marrow on the red blood cell count, but you need a good hematologist to figure all of this out because this is very very complex and complicated stuff.  And you need a haptimax to check for hemolysis, to tell the difference between what is bone marrow and what is riba.
Here's an article on managing all three cell line reductions, including platelets, while on treatment:
http://www.ccjm.org/PDFFILES/hepadOng.pdf

CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 71 • SUPPLEMENT 3 MAY 2004 S17
n ABSTRACT
Hematologic abnormalities such as anemia, neutropenia,
and thrombocytopenia are common during
combination therapy with pegylated (or standard)
interferon and ribavirin for chronic hepatitis C. Ribavirin-
induced hemolytic anemia is a common cause of
dose reduction or discontinuation. Bone marrow suppression
also contributes to the anemia and is the predominant
mechanism for interferon-induced neutropenia
and thrombocytopenia. Although dose reduction or
discontinuation of combination therapy can reverse
these abnormalities, they may reduce virologic response.
Hematopoietic growth factors may provide a
useful alternative for managing these hematologic
side effects without reducing the optimal dose of the
combination antiviral regimen. Treatment of anemia
also may improve patients’ health-related quality of
life and their adherence to combination antiviral therapy.
The impact of growth factors on sustained virologic
response and their cost-effectiveness in patients
with chronic hepatitis C need further assessment.
The most effective therapeutic regimen for
infection with hepatitis C virus (HCV)
today is the combination of pegylated interferon
alfa and ribavirin (combination therapy),
which yields sustained virologic response (SVR)
in up to 56% of patients.1,2 However, one of the main
drawbacks of this combination therapy (and also of
regimens combining nonpegylated interferon with
ribavirin) is the development of side effects, which can
result in suboptimal dosing or discontinuation of therapy.
That can limit the likelihood of SVR, since one of
the determinants of SVR is adequate dose and duration
of therapy, as previously discussed in this supplement.
Among the side effects of combination therapy, hematologic
abnormalities such as anemia, neutropenia, and
thrombocytopenia have been reported to result in dose
reduction and discontinuation of therapy in up to 25%
and 3% of patients, respectively.3
Management of hematologic abnormalities during
antiviral therapy for HCV infection can be an important
strategy for maximizing treatment outcomes. While
information on the use of hematopoietic growth factors
during therapy for HCV infection remains preliminary,
these agents are important since they can be helpful as
adjuncts to antiviral therapy. This review explores the
incidence, clinical significance, and management of
anemia, neutropenia, and thrombocytopenia associated
with combination therapy for HCV infection.
n ANEMIA
A leading cause of dose reduction and discontinuation
Among the hematologic abnormalities associated with
combination therapy, anemia is probably the most significant,
as it can reduce patients’ health-related quality
of life and may be the main determinant of fatigue.4
A pooled analysis of data from three large trials comparing
pegylated interferon (peginterferon) with nonpegylated
interferon determined that worsening of
fatigue scores was a significant predictor of treatment
discontinuation.5 Interruption and premature discontinuation
of antiviral therapy decreases the efficacy of
antiviral therapy. In large multicenter clinical trials of
Managing the hematologic side effects
of antiviral therapy for chronic hepatitis C:
Anemia, neutropenia, and thrombocytopenia
JANUS P. ONG, MD, AND ZOBAIR M. YOUNOSSI, MD, MPH
From the Center for Liver Diseases, Inova Fairfax Hospital, Falls
Church, Va.
Address: Zobair Younossi, MD, MPH, Center for Liver Diseases,
Inova Fairfax Hospital, 3300 Gallows Road, Falls Church, VA
22042; e-mail: zobair.***@****.
Disclosure: Dr. Ong reported that he has no commercial affiliations
or interests that pose a potential conflict of interest with
this article. Dr. Younossi reported that he has received grant or
research support from, serves as a consultant to, and is on the
speakers’ bureaus of the Roche, Schering-Plough, Amgen, Ortho
Biotech, and Axcan corporations.

[alagirl]

S18 CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 71 • SUPPLEMENT 3 MAY 2004
MANAGING HEMATOLOGIC EFFECTS OF ANTIVIRAL THERAPY
combination therapy for HCV infection, dose reduction
for anemia occurred in up to 23% of patients.1,2
Discontinuation was uncommon in these trials, but
the rate of discontinuation is higher outside of clinical
trials. In one study that evaluated “real world” patients,
anemia was the leading cause of premature discontinuation
of combination therapy, accounting for 36% of
all discontinuations (ie, in 8.8% of all patients).6
Significant anemia (ie, hemoglobin < 10 g/dL) has
been observed in up to 9% to 13% of patients receiving
combination therapy with interferon and ribavirin.
1 Moderate anemia (hemoglobin < 11 g/dL) may
be seen in 30%.7 The mean maximal decrease in
hemoglobin can be as high as 3.1 g/dL and 3.7 g/dL
with nonpegylated and pegylated interferon, respectively,
in combination with ribavirin.2,8 The hemoglobin
generally reaches its lowest level within the first 4
to 8 weeks of therapy, plateauing thereafter and returning
to baseline values after treatment discontinuation.
Both ribavirin and the interferons contribute
There are several mechanisms by which anemia occurs
during combination therapy for HCV infection. Ribavirin
causes a dose-dependent and reversible hemolytic
anemia. After entering red blood cells, ribavirin is
phosphorylated into its active form, leading to depletion
of adenosine triphosphate.9 This leads to impaired
antioxidant mechanisms, resulting in membrane
oxidative damage and subsequent extravascular red
blood cell removal by the reticuloendothelial system.9
Interferons also contribute to anemia, mainly
through bone marrow suppression.10 De Franceschi
and colleagues9 found that interferon impairs compensatory
reticulocytosis related to ribavirin-induced
hemolytic anemia, suggesting that the bone marrow–
suppressive effect of interferon contributes to the
anemia associated with combination therapy.
Managing by dose reduction—and the limits thereof
There are widely variable approaches to the management
of anemia during combination therapy. The
package insert for ribavirin recommends reducing the
ribavirin dose at hemoglobin levels less than 10 g/dL
and permanently discontinuing the drug at levels less
than 8.5 g/dL. As previously noted (see the article by
Patel and McHutchison in this supplement), such
dose reduction can have adverse implications for
SVR, since studies show that higher doses of ribavirin
are associated with higher SVR rates. Rates of SVR
are higher in patients who receive more than 80% of
their full interferon and ribavirin doses for more than
80% of the intended duration of therapy.11 One report
found that SVR rates were higher in patients who
received greater than 10.6 mg/kg/d of ribavirin.1 In
fact, delivering the optimal dose of antiviral therapy
seems to be most crucial during the first 12 weeks of
antiviral therapy, the period of most significant
decline in hemoglobin.12
A role for erythropoietic growth factors?
An alternative strategy for raising hemoglobin levels
without resorting to dose reduction or premature
withdrawal is the use of erythropoietic growth factors.

[alagirl]

Epoetin alfa. Recombinant human erythropoietin,
commercially available as epoetin alfa, is used to treat
anemia associated with chronic renal failure, zidovudine
therapy for HIV infection, or cancer chemotherapy,
as well as to reduce the need for blood transfusions
in anemic patients undergoing elective surgery.
Two studies have evaluated the use of epoetin alfa
as an adjunct for the management of anemia (defined
as hemoglobin < 12 g/dL) during combination therapy
for chronic hepatitis C. Dieterich and colleagues13
compared epoetin alfa therapy (40,000 units weekly)
with standard-of-care anemia management in 64
patients in terms of the effects on hemoglobin levels
and ribavirin dose. They found that patients receiving
epoetin alfa had increases in hemoglobin level and
maintained their ribavirin dose. At 16 weeks after
randomization, the patients who received epoetin alfa
had significantly higher mean hemoglobin levels
(14.2 vs 11.2 g/dL) and a higher mean ribavirin dose
(895 vs 707 mg/d) compared with the patients who
received standard anemia management. Also, significantly
fewer patients in the epoetin alfa group had
their ribavirin dose reduced (5.7% vs 33.3%), and significantly
more patients in the epoetin alfa group
maintained a daily ribavirin dose of 800 mg or greater
(83% vs 54%).
In the other study,14 186 patients from several centers
were randomized to receive epoetin alfa (40,000
to 60,000 units weekly) or placebo. After 8 weeks,
patients receiving epoetin alfa showed improvement
in their anemia and were more likely than placebo
recipients to maintain their ribavirin dose from randomization.
These patients also had higher mean
hemoglobin levels and higher mean ribavirin doses
than the placebo recipients. This study had an openlabel
period during which patients receiving epoetin
alfa who were responding to this treatment continued
their medication and those receiving placebo who
developed anemia and/or required ribavirin dose
reduction were started on epoetin alfa. During followup
in the open-label period, no further changes were
noted in patients previously taking epoetin alfa,
whereas patients who previously had taken placebo
showed significant increases in hemoglobin levels.

[alagirl]

The investigators also found that improvement in
hemoglobin was an independent predictor of
improvement in health-related quality of life as measured
by the Linear Analog Scale Assessment and the
Medical Outcomes Survey Short Form–36.15 They
suggested that since epoetin alfa increases hemoglobin
levels in anemic HCV-infected patients receiving
combination therapy, it may also improve healthrelated
quality of life in these patients.
Neither of these two studies was designed to evaluate
the effect of epoetin alfa on virologic response.
Epoetin alfa was generally well tolerated in both
studies.
Darbepoetin alfa. Darbepoetin alfa is a novel
erythropoietic protein recently approved by the US
Food and Drug Administration for treatment of anemia
associated with chronic renal failure and cancer
chemotherapy. Darbepoetin alfa is a hyperglycosylated
protein, which gives it a threefold longer circulating
half-life, higher in vivo potency, and less-frequent
dosing compared with epoetin alfa.16 Darbepoetin alfa
stimulates erythropoiesis by the same mechanism as
endogenous erythropoietin. In a number of clinical
trials of patients receiving cancer chemotherapy, darbepoetin
alfa had the same efficacy and safety profile
as epoetin alfa but required less-frequent dosing.16
Preliminary data from a recent study17 show that
darbepoetin alfa therapy (3 mg/kg every other week)
in patients with chronic hepatitis C increases hemoglobin
levels and also allows for maintenance of the
optimal weight-based dose of ribavirin in 83% of
patients, suggesting that it may be beneficial as an
adjunct to combination therapy for HCV infection.
Improvements in health-related quality of life also
were noted after initiation of darbepoetin alfa. To
date, no significant toxicity has been noted with the
use of darbepoetin alfa in this study.

[alagirl]

Darbepoetin alfa’s increased half-life and less-frequent
dosing may simplify anemia management,
potentially offering greater convenience to both
patients and health care providers.
Additional issues to address. These studies are
promising and should provide impetus for larger trials
that can adequately address issues such as the optimal
dose and duration of erythropoietic growth factor
therapy, the effect of improvement in anemia on
SVR, quality of life, treatment adherence, efficiency
of care delivery, and cost-effectiveness. The hemoglobin
level that should trigger the initiation of growth
factor therapy and the target hemoglobin level to be
achieved are other important issues to consider.
n NEUTROPENIA
Interferon therapy is associated with a reduction in
peripheral white blood cell counts (both neutrophils
and lymphocytes). This has been attributed to bone
marrow suppression or a reversible impairment in the
release of neutrophils and lymphocytes.10 Peginterferons
result in a greater degree of neutropenia than
does nonpegylated interferon. Similar to hemoglobin
levels, neutrophil counts decline rapidly within the
first 2 weeks of therapy, stabilize for the duration of
therapy, and rapidly return to baseline levels after
treatment discontinuation.
Reducing the interferon dose is a common strategy
Because of concerns about the association between
neutropenia and infections, the package inserts of
both peginterferon preparations (alfa-2a and alfa-2b)
recommend dose reduction for patients with neutrophil
counts less than 750 cells/mm3 and drug discontinuation
for those with counts less than 500
cells/mm3. In the pivotal trials of combination therapy
with peginterferon and ribavirin, neutropenia was the
most frequent reason for reducing the peginterferon
dose.1,2 Neutropenia-related dose reductions took
place in 24% and 18% of patients receiving peginterferon
alfa-2a and alfa-2b, respectively. Less than 1% of
patients required permanent drug discontinuation.
Although reducing the dose of peginterferon can,
like ribavirin dose reduction, also reduce the likelihood
of SVR, this impact has been less clearly established. In
the large multicenter study of peginterferon alfa-2b and
ribavirin,1 patients who were randomized to peginterferon
1.5 mg/kg/wk for 1 month followed by 0.5 mg/kg/wk
had significantly lower SVR rates than did those who
received 1.5 mg/kg/wk for the duration of therapy. This
suggests that maintenance of the optimal dose of peginterferon
for the entire duration of treatment may also
be a determinant of long-term virologic response.
The neutrophil count threshold used for dose modification
was extrapolated from data in cancer patients
who developed neutropenia related to chemotherapy.
The implications of these data for interferon-related
neutropenia in patients with hepatitis C are not wholly
clear. In a systematic analysis of bacterial infections
in 119 patients receiving interferon and ribavirin, none
of the 22 infections that occurred during treatment
were observed in neutropenic patients.18 The only bacterial
infection that required hospital admission was in
a patient with cirrhosis who had a neutrophil count
CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 71 • SUPPLEMENT 3 MAY 2004 S19
ONG AND YOUNOSSI
greater than 1,000 cells/mm3. These findings suggest
that neutropenia may be better tolerated by HCVinfected
patients receiving combination therapy than
it is by cancer patients receiving chemotherapy.
Management looks to granulocyte
colony-stimulating factor
The management of neutropenia, like that of anemia, is
variable. While some clinicians tolerate more profound
neutropenia before recommending dose reduction, others
are using filgrastim to raise the neutrophil count in
HCV-infected patients receiving combination therapy.
Filgrastim is a recombinant human granulocyte
colony-stimulating factor (G-CSF) that is used to
increase white blood cell and neutrophil counts in
cancer patients with chemotherapy-associated neutropenia.
Very few studies have reported the use of filgrastim
in patients with chronic hepatitis C. Van
Thiel and colleagues19 evaluated filgrastim as an
adjunct to interferon in HCV-infected patients with
advanced liver disease. All 30 patients had histologically
confirmed cirrhosis. They were randomly
assigned to receive interferon alfa-2b alone or with
300 mg of filgrastim given twice a week. The dose of
interferon alfa-2b was 5 MU daily. Although the
mean and peak white blood cell counts were higher
for the patients receiving filgrastim, the nadir values
were the same between the two treatment groups. A
higher proportion of patients receiving filgrastim
(53% vs 40%) achieved SVR, but this difference was
not statistically significant. Filgrastim appeared to be
fairly well tolerated in this study.
In a more recent study,20 the use of filgrastim allowed
patients to resume and maintain their full dose of
peginterferon. In an additional study,17 filgrastim was
used to manage neutropenia in 39 patients who were
treated with peginterferon alfa-2b and ribavirin.
Preliminary results from this study demonstrate that
89% of patients receiving filgrastim had significant
improvement in their neutrophil count (Younossi,
unpublished data, 2004).
Together, these results indicate that filgrastim may
be safe and effective in raising neutrophil counts in
HCV-infected patients undergoing antiviral therapy.
Nevertheless, future research will be important to
better understand the clinical implications and management
of neutropenia in these patients.
n THROMBOCYTOPENIA
A decrease in platelet count also may be observed in
patients who are receiving interferons, and such
decreases are more prominent with the peginterferons.
The decrease is caused primarily by a reversible
bone marrow suppression, although autoimmunerelated
thrombocytopenia may also occur. The concurrent
use of ribavirin may blunt the thrombocytopenic
effect of interferons as a result of reactive
thrombocytosis.
With peginterferons, the platelet count decreases
gradually over 8 weeks, stabilizing thereafter and
returning to baseline values within 4 weeks of stopping
therapy. Bleeding complications as a result of
thrombocytopenia are uncommon.1,2
In randomized clinical trials of the peginterferons,
the rate of dose reduction attributed to thrombocytopenia
ranged from 3% to 6%.1,2 However, most
patients in clinical trials are carefully selected, and
these trials excluded patients with more advanced
liver disease. Patients with cirrhosis may have baseline
thrombocytopenia due to hypersplenism from
portal hypertension, and these patients may develop
more significant decreases in platelet counts owing to
bone marrow suppression during therapy. For these
patients, an alternative approach to dose modification
would be beneficial to avoid dose reduction or
discontinuation, both of which reduce the chance of
SVR.
Early, unencouraging results with interleukin-11
Data are even more limited on the use of growth factors
for the management of interferon-related thrombocytopenia
than for the management of interferonrelated
anemia and neutropenia. Oprelvekin, or
recombinant human interleukin-11, is approved for
use in cancer patients receiving chemotherapy to
enhance platelet production. It also may be useful as
adjuvant therapy in HCV-infected patients receiving
combination therapy.

[alagirl]

Oprelvekin was evaluated in an open-label study of
13 HCV-infected patients undergoing therapy with
interferon (3 MU three times per week) and ribavirin
(1,000 to 1,200 mg/d) for 48 weeks.21 All patients had
low baseline platelet counts (< 100,000 cells/mm3).
Oprelvekin was given concurrently at a dose of 50
mg/kg subcutaneously three times per week. The
researchers noted improvement in platelet counts:
the mean count at 2 weeks was higher than the baseline
count (98,600 vs 73,600 cells/mm3; P < .05). The
main side effect was fluid retention, which was noted
in all patients, with 10 of 13 patients requiring diuretic
therapy.
Given this side-effect profile in patients with
HCV-related cirrhosis, there currently is not much
enthusiasm for oprelvekin’s use. Newer growth factors
S20 CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 71 • SUPPLEMENT 3 MAY 2004
MANAGING HEMATOLOGIC EFFECTS OF ANTIVIRAL THERAPY
with more promising safety and efficacy profiles are in
development.
n CONCLUSIONS
Hematologic abnormalities are common during combination
antiviral therapy for chronic hepatitis C.
Although dose reduction or discontinuation can easily
treat these side effects, they can adversely affect
the efficacy of combination antiviral therapy. This is
especially true in the management of ribavirininduced
anemia. Recent evidence has led to increasing
recognition that optimal dosing of ribavirin is a
crucial determinant of viral clearance. Preliminary
data suggest that hematopoietic growth factors may
be useful for managing the hematologic side effects of
combination therapy (especially anemia). The current
data are limited and further study will be
required, particularly with respect to the potential
impact on SVR, cost-effectiveness, health-related
quality of life, and other patient-related outcomes.
CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 71 • SUPPLEMENT 3 MAY 2004 S21
ONG AND YOUNOSSI
n REFERENCES
1. Manns MP, McHutchison JG, Gordon SC, et al. Peginterferon
alfa-2b plus ribavirin compared with interferon alfa-2b plus ribavirin
for initial treatment of chronic hepatitis C: a randomised trial.
Lancet 2001; 358:958–965.
2. Fried MW, Shiffman ML, Reddy KR, et al. Peginterferon alfa-2a
plus ribavirin for chronic hepatitis C virus infection. N Engl J Med
2002; 347:975–982.
3. Fried MW. Side effects of therapy of hepatitis C and their management.
Hepatology 2002; 36(suppl 1):S237–S244.
4. Martin LM, Younossi ZM, Price L, et al. The impact of ribavirininduced
anemia on health-related quality of life. Hepatology 2001;
34(suppl):600A. Abstract.
5. Bernstein D, Kleinman L, Barker CM, Revicki DA, Green J.
Relationship of health-related quality of life to treatment adherence
and sustained response in chronic hepatitis C patients. Hepatology
2002; 35:704–708.
6. Gaeta GB, Precone DF, Felaco FM, et al. Premature discontinuation
of interferon plus ribavirin for adverse effects: a multicentre survey
in ‘real world’ patients with chronic hepatitis C. Aliment Pharmacol
Ther 2002; 16:1633–1639.
7. PEG-Intron (peginterferon alfa-2b) package insert. Kenilworth,
N.J.: Schering Corporation; October 2003.
8. Maddrey WC. Safety of combination interferon alfa-2b/ribavirin
therapy in chronic hepatitis C-relapsed and treatment-naive
patients. Semin Liver Dis 1999; 19:67–75.
9. De Franceschi L, Fattovich G, Turrini F, et al. Hemolytic anemia
induced by ribavirin therapy in patients with chronic hepatitis C
virus infection: role of membrane oxidative damage. Hepatology
2000; 31:997–1004.
10. Peck-Radosavljevic M, Wichlas M, Homoncik-Kraml M, et al.
Rapid suppression of hematopoiesis by standard or pegylated interferon-
alpha. Gastroenterology 2002; 123:141–151.
11. McHutchison JG, Manns M, Patel K, et al. Adherence to combination
therapy enhances sustained response in genotype-1-infected
patients with chronic hepatitis C. Gastroenterology 2002;
123:1061–1069.
12. Davis GL, Wong JB, McHutchison JG, et al. Early virologic
response to treatment with peginterferon alfa-2b plus ribavirin in
patients with chronic hepatitis C. Hepatology 2003; 38:645–652.
13. Dieterich DT, Wasserman R, Brau N, et al. Once-weekly epoetin
alfa improves anemia and facilitates maintenance of ribavirin dosing
in hepatitis C virus–infected patients receiving ribavirin plus interferon
alfa. Am J Gastroenterol 2003; 98:2491–2499.
14. Afdhal NH, Dieterich DT, Pockros PJ, et al. Epoetin alfa treatment
of anemic HCV-infected patients allows for maintenance of ribavirin
dose, increases hemoglobin levels, and improves quality of life vs
placebo: a randomized, double-blind, multicenter study. Gastroenterology
2003; 124(suppl 1):A-714. Abstract.
15. Afdhal NH, Klopfer A, Tang L, Younossi Z. Hemoglobin increase
is independently associated with increased health-related quality of
life in anemic interferon/ribavirin-treated hepatitis C virus-infected
patients treated with epoetin alfa. Hepatology 2003; 38(suppl 1):
312A. Abstract.
16. Glaspy JA. Hematopoietic management in oncology practice. Part 2.
Erythropoietic factors. Oncology (Huntingt) 2003; 17:1724–1739.
17. Younossi ZM, Ong JP, Collantes R, et al. Darbepoetin alfa for ribavirin-
induced anemia in patients with chronic hepatitis C treated
with pegylated interferon and ribavirin: a preliminary analysis.
Gastroenterology 2004; 126(suppl 2). Abstract.
18. Soza A, Everhart JE, Ghany MG, et al. Neutropenia during combination
therapy of interferon alfa and ribavirin for chronic hepatitis
C. Hepatology 2002; 36:1273–1279.
19. Van Thiel DH, Faruki H, Friedlander L, et al. Combination treatment
of advanced HCV associated liver disease with interferon and
G-CSF. Hepatogastroenterology 1995; 42:907–912.
20. Senkbeil LE, Moss JG, Gaglio PJ, et al. Erythropoietin maintains
ribavirin dose and sustained virologic response during HCV treatment.
Hepatology 2003; 38(suppl 1):744A. Abstract.
21. Rustgi VK, Lee P, Finnegan S, Ershler W. Safety and efficacy of
recombinant human IL-11 (oprelvekin) in combination with interferon/
ribavirin in hepatitis C patients with thrombocytopenia.
Hepatology 2002; 36(4 Pt 2):361A. Abstract

[alagirl]

This is the SECOND of two studies showing that higher ribavirin dosages are far more effective in long term SVR, and that it is normal for the combo treatment to reduce all three cell lines.  The only cell line typically that begs for treatment is red blood cell line, and there really doesn't seem to be a reason why not to treat it, in FACT, many HCV patients can't figure out why on earth docs don't treat it sooner since the most precipitous drop off seems to occur in the second or third week of HCV therapy.

But the above study, and I beg your pardon for the long windedness of it, shows that even platelet counts go down, as well as white blood cell and red blood cell lines.

One hepper wrote that her doc said that eight of his patients had aplastic anemia on hep.  That REALLY floored me.  Aplastic anemia is technically the reduction of all cell lines.  Well hello duh!  Of course they are all going to be reduced during tx.  This study even SAYS they will be.  It should kind of be expected.

On the other hand, there ARE people who have renal issues and poor creatnine clearance and/or pre-existing anemia.  Some of these patients, the renal patients in particular (and other patients which I don't even know about medically me not being a doctor at all) are going to be at greater medical risk from treatment drugs affecting their bone marrow.  These patients are going to be at greater risk and HAVE to really be followed closely if its even healthy for them to treat at all.

I cannot say strongly enough that tx has to be followed closely by your doctor and sometimes more than one.  I have FOUR, yes count them FOUR.  And one of them sees me once a week.  Two of them see me once a month.  This is due to my blood count issues because I had anemia of chronic disease going into this.

My own case on the riba may be different from some here as well because I'm an acute patient and its thought they may not need as much riba (and still I am holding with my 1000mg a day to be safe).

I am going to post one more study on the importance of high riba below.

[alagirl]

Posting this one because it's so much newer:
http://www.hivandhepatitis.com/hep_c/news/2007/082407_a.html

Use of Epoetin (EPO) to Manage Anemia in Chronic Hepatitis C Patients Treated with Pegylated Interferon plus Ribavirin

Successful treatment of chronic hepatitis C with pegylated interferon plus ribavirin is often limited by anemia. An adequate amount of ribavirin reduces the risk of post-treatment HCV relapse, but the incidence of anemia rises with higher ribavirin doses.

As reported in the August 2007 issue of Hepatology, researchers conducted a study to determine whether using erythropoietin, or epoetin alpha (EPO), with or without a higher dose of ribavirin, could enhance sustained virological response (SVR) rates.

They randomized 150 treatment-naive patients (36% African-American) with chronic genotype 1 hepatitis C into 3 treatment groups:

• Group 1: pegylated interferon alpha-2b (PegIntron) 1.5 mcg/kg/week + weight-based ribavirin 13.3 mg/kg/day (800-1400 mg/day);

• Group 2: pegylated interferon + weight-based ribavirin + EPO (40,000 U/week);

• Group 3: pegylated interferon + high-dose weight-based ribavirin (15.2 mg/kg/day; 1000-1600 mg/day) + EPO (40,000 U/week).

In groups 2 and 3, EPO was started at the onset of therapy in order to maintain hemoglobin levels between 12 and 15 g/dL. When required, the ribavirin dose was reduced by 200-mg steps.

Results

• A significantly smaller percentage of patients in Group 2 compared with Group 1 had a decline in hemoglobin to less than 10 g/dL (9% vs 34%; P < 0.05).

• Fewer patients in Group 2 required ribavirin dose reduction (10% vs 40%) compared with Group 1 patients (P < 0.05).

• Despite this, SVR rates were not significantly different in Group 1 and Group 2 (19% vs 29%).

• However, the SVR rate was significantly greater (49%) in Group 3 (P < 0.05).

• This resulted from a significantly lower HCV relapse rate: 8% in Group 3 vs 38% in Groups 1 and 2 (P < 0.05).

Conclusion

"We conclude that using EPO in all subjects at the initiation of pegylated interferon and ribavirin treatment will not enhance SVR given the same starting dose of ribavirin," the researchers stated. "In contrast, a higher starting dose of ribavirin was associated with a lower relapse rate and higher rate of SVR."

08/24/07

Reference
ML Shiffman, J Salvatore, S Hubbard, and others. Treatment of chronic hepatitis C virus genotype 1 with peginterferon, ribavirin, and epoetin alpha. Hepatology 46(2): 371-379. August 2007.

[jmjm530]

If I have this right (and not sure I do)  you were doing 40,000 units/week of Procrit which raised your hgb (hemoglobin) from around 8-10 to 14. Then your procrit was increased to 80,000 units/week in two doses.

My first question is why the increase in Procrit with hgb 14? That's pretty high, and in fact many doctors would *reduce* (possibly even stop) Procrit at that point, not increase. So maybe I'm reading things wrong.

In any event, you do need an experienced medical professional to advise/monitor you -- esp in terms of the current sfx you mention.  Some use hematologists and some use their treatment doctor. Some a combo. Personally, I think a well-experienced hepatologist with a large treatment base would be my first choice since they have the experience to put the anemia within a treatment context that some hematolgists may not. That's how my tx team did it -- in house. Others have had good luck with outside hematologists, who hopefully have had some experience with those on peg/riba or were at least willing to learn.

And, yes, there were 'black box' warnings early this year (and lately more) on Procrit, but like anything else, it's a matter of weighing risks versus rewards. In your case the reward would be a better chance of compliance to the tx drugs, meaning a better chance of SVR and all that goes with it, including hopefully the reversal of liver damage. But again, hgb 14.9 seems kinda high for someone to keep taking Procrit at least to this non-professional. But remember, it takes 2-4 weeks for Procrit to kick in (or kick out) so this has to be kept in mind with any increase (or decrease) in dose.

My hgb hit close to 14 and my Procrit dose was halved, only to have it drop to the low 11's (not good for me) with the eventual result that I ended up temporarily going on more Procrit than before I stopped.

All the best,

-- Jim

[alagirl]

You are a pro at doing it - I'll get there but maybe I should ask for a different syringe.
I use the B-D 1ml 27g 1/2.  
I remember you writing that you use a certain one you like, which one is that?
Is it different than the one ordered for me?
-----------------------------------------------------------------
Xenigma, I use the BD allergy syringes in the blue bags.  If those aren't available I ask for insulin syringes just because both of those have fine (and by that I mean very thin (and less owie factor, lol) needles.  This cuts down on bruising and the pain when I stick them into my tummy, which is where I do most of my shots.  Because the pegasys shot uses a much larger needles and it hurts a lot more (hate it).  When I draw the epogen (it's just the generic form of procrit, so cheaper on my insurance) out of the vial, sometimes there is a bit of air at the top of the needle and that is no big deal in all actuality.  I push up on the needle to get most of it out, then I wipe the top of the needle with a cotton swab with alcohol on it.  I try never to puncture the vial twice because it will dull the needle which does tend to make it hurt more.  If you look at the needle carefully (use glasses if you have probs seeing up close as I am starting to, lol) you will notice that at the "eye" of the needle it is slanted.  One side is longer.  When you puncture your skin if you put that longer side on the bottom with the open side on top, it will hurt less because that longer side is where the first side of the sharp point is.  (My nurse showed me this back when I first started taking epo and I could see LOL).  On the pegasys I wipe the top with alcohol after pushing a little bit of air out of the top too because the liquid that comes out of the top stings badly I've found.  Wiping it off the top helps it hurt a lot less when I put the needle in my tummy.  Did I mention I am a big baby weenie?  I am.

Another trick she showed me is to warm the vial in my hand by rubbing it back and forth between my hands and then to push both the needle, and then the liquid very slowly.  I do THAT with both my epogen AND my pegasys and to date I have had NO BRUISING and no pain from any of my treatment shots.

Which is nice since I have horrible bone bain, migraines and RA as a result of the side effects.  LOL I guess its going to getcha either coming or going. ;)

[jmjm530]

Think we might have discussed this, not sure. But while hard to believe, even puncturing the rubber once results in a *noticeable* difference in how easily the needle slides into the skin. In fact, in the beginning, I always blamed the difference between how the Procrit shot (and the Pegasys) shot felt on the needle gauge, when in fact it turned out to be solely because the Pegasys syringe is not dulled by puncturing the rubber barrier.

The optimal solution I've found is to use the B-D Luer-Lok system. You basically draw the epo with one needle, and then switch to a new needle before the injection. (The Luer-lok system let's you screw the needle on and off very easily). That way, the needle that punctures your skin is as sharp -- well, as sharp as a needle! If you want to go tweak the system even more -- order larger gauge needles to draw the epo up, and then a very small gauge needle (like the insulin) needle for the actual shot. I think you will be surprised at the difference changing needles makes.

Of course, just make sure when you change needles that you hold the syringe upright. And don't ask me why I know that :)

Hope this finds everyone in realtively good health and spirits today.

-- Jim

[alagirl]

Jim - I think we are advising the same thing here - that at 14.9 it's time probably to talk to the doc about backing off the dose amount, or going more days in between or both.  Given the AMOUNT of time it takes the body to respond though, do you think its smart to stop entirely?  I hate for KC to stop entirely then get into another loop where its way too low again and takes forever to catch up...

I think I'm asking you this for me too, because with mine hitting almost 11 and me being on the increased dose I suspect it may hit too high and then I'll be in the position of backing off to try to regulate it but I wasn't planning on cutting it all the way off.  I know I've got a bit of a different situation from KC though.

My other question is, how many of the normal people out there (you know, not the weirdos like me lol) have anemia early on, take the procrit, get their count back up and then have it pretty much resolve and don't have to go back on the procrit?  Because I think I have seen some evidence of that on here with some folks (lucky sob's btw lol).  I know that didn't happen in your case, Jim, but what's been your experience with it in terms of watching other folks?

[Xenigma]

Thanks for your comments & help. I always do bevel up on both Peg & Procrit injections but the Peg I inject in my tummy (whichI have no pain or bruising per say- just some red areas)  The Procrit I do in the thigh and Oh does that burn!! Little round black and blue's too!  I do wipe the needles with an alcohol pad to get any drips off before I inject either med. I also pull the plunger back to make sure I'm not in a vein.  I guess I am doing it all correctly, I think just shooting in my thigh fat is more sensitive than that little roll of flab under my belly button area hehe  ;-)  
I used to hate that roll, but now I wish it were larger  LMAO
Thanks again...
enigma

[alagirl]

I don't think I ever entirely answered your question, looking back.  The extra air is ok.  Don't worry about it.  It even gets in actual IV's sometimes, which used to freak me when I'd be in the hospital, and the nurses never even worried about that.  (I know, cause I pushed the call button a few times telling them they were going to give me an embolism.  They laughed at me.  Hard. lol)  So don't worry about it with your procrit.  Just do a small squirt out the top to get rid of the small amount and don't sweat the rest, just give the sub q injection.

[Xenigma]

Yes, I do believe that puncturing the grey top of the Procrit bottle dulls the needle.  Takes more "umph" to slide it in the fat of my thigh.  The peg in my tummy is smooth and I can tell the difference.  
Thanks for your input...
BTW, my Hemoglobin was at 10.4 when we started the Procrit.
It takes a while to work and I felt like ****.  Probably should have started sooner.

[alagirl]

The optimal solution I've found is to use the B-D Luer-Lok system. You basically draw the epo with one needle, and then switch to a new needle before the injection.
-----------------------------------------------------------------------------------------------
I didn't even know you could get small bd needle tops like that!  OK.  Cool, I am going to ask for them from my pharmacy.  So xenigma, IF you can get those, I'd do that instead.  If you can't, I think puncturing the grey seal once with the tiny needle still works better than using the big needle.

[jmjm530]

Here's a link to the B-D Luer Lok system. The other advantage is that because it screws on, less chance for drips. Like the name suggests, it really "locks" on, sort of.

http://www.homecaredelivered.com/catalog/prod2162.php

-------------------
Good question. As mentioned, in my case I came off the epo too fast, then the hgb dropped too much and then I had to go play catch up. Again, it's that d*mn 2-4 week delay that makes things difficult because it can lull you into a false sense of complacency that everything is going fine and then WHAMMO you're on the floor again :)

As to others here, I do remember several others -- GoofyDad comes to mind (I think) -- where they backed off the epo too fast (or maybe he started too slow) and also ended up in 'catch-up' mode.

In your case, you're on 80,000 wk with hgb 11 and climbing. You'd have to sit down with pen and paper and work backwards, but my guess is that the hgb 11 may be more the result of 40,000 wk (2-4 weeks ago) than the 80,000 increase. And if so, then you might reasonably cut down to 60,000 wk with bi-weekly monitoring and back to maybe 40,0000, 2-4 weeks after that if your hgb is still in the desired range. But of course, I'm not a hematologist, and just basing this on my personal experience, lay observations and deductive logic which may or may not be pertinent. On the other hand, you have what appears to be a good hematolgist to run all of this by. Hope this helps.

All the best,

-- Jim

[Xenigma]

Always some extra air, i just push the plunger a bit to get some of it out but I have injected some too. (Or I loose my 40,000 units)   No large bubbles though just some like frothy bubbles at the top by the needle.
Gonna see if I can get the B-D Luer-Lok system as well.

[alagirl]

We could always call some of those guys on the Tour de France and ask if they have any special EPO administration tips...

[jmjm530]

Part of that may be unclear so I will try and clarify plus expand based on how I eventually ended up tweaking my epo doses.

I was suggesting -- assuming that 2-4 weeks ago you were on only 40,000/wk -- that you might consider dropping to 60,000 units/week now, which I accomplished by injecting 40,000 units once every five days. Then you would monitor bi-weekly for 2-4 weeks. If after that time, the hgb is above your target, then maybe inject the 40,000 units every six days. Wait another 2-4 weeks -- if within desired range -- inject every seven days, which would bring you back to 40,000 units/week. In other words, be real gradual.

Alternatively, if after dropping to 60,000/wk (injecting 40,000 every five days), your hgb stabalized where you wanted it after 2-4 weeks -- then you have to decide whether or not you want to test the waters by injecting every six and eventually every seven days. You might want to, or you might decide to leave well enough alone at 60,000 units/wk.

During my last trimester of tx, I was injecting the 40,000 units somewhere between every five and seven days, depending on a combination of how I felt, my chart of hgb levels against epo dose (going back 2-4 weeks) and a Ouija board :) That said, probably would have done just as well if I just stayed at 60,000/wk, but I'm a guy who likes to tinker :)

-- Jim

[jmjm530]

X,

Def get an rx for a bunch of Luer-Loks and try some diff syringe gauges. I suppose you could practice a bit first -- screwing on/off the needle -- as well as drawing out the liquid, (using water) that you first injected into an empty vial. Of course, not suggesting you practice jabbing yourself, just getting used to the system which actually doesn't really need getting used to but one 'dry' run at least is always a good idea and these barrels and needles are cheap enough that you can test a few and discard -- so always get a bunch of xtras.

Ala,

Yeah, those are the pro's. I'm sure they can tell you how to time your dose down to a 3-hour race window :)

[alagirl]

Good question. As mentioned, in my case I came off the epo too fast, then the hgb dropped too much and then I had to go play catch up.
-----------------------------------------------------------------------------------
LOL yeah, NOT goin' THERE again on this tx if I can possibly help it.  You know its so weird for me, because you were  right, I was way cavalier about my ability to handle the anemia when I first started taking the meds.  I had no idea how profound the effects of the riba hemolysis would be.  

So due to that previous miscalculation on my part, I realize that I cannot count on my prior experience with how I used to respond to adjustments in my epogen.  Before, I could adjust up or down, or stop procrit for a week or so and begin to see a decline.  I could restart a smaller dose the following week and see a stabilization (yes, a blood cell takes 8 -10 days to form, just telling you my experience with my own crazy bod lol).  

But now...  I can't count on any of that.  It's an entirely new roller coaster ride and I am not anywhere close to the control box.  In fact, that guy apparently either quit or took a protracted lunch break and left all the cars hanging upside down at the top of one of the loops... ;)

[jmjm530]

Ala: was way cavalier about my ability to handle the anemia when I first started taking the meds.
-------------
I really saw that coming back then, and tried to warn -- but to  have listened to a stranger on the net would not have been a rational choice.

However, I do think your hemo should have had you on 40,000 units/from the get go, and given you history, Prophylactive dosing of 40,000 units/week two weeks prior to tx (or at least concurrent with tx) would not have been unreasonable. Problem again, is that a lot of hemo's don't have much HCV tx experience.

The good news, however, is that our bodies do adjust some to lower hgb levels, as tx goes on. Just another variable to plug into the 'ole equation.

Anway, so what's the alagirl to do? 80,000 units/week does seem like a lot for someone with hgb climbing.

-- Jim

[alagirl]

60,000 units/week now, which I accomplished by injecting 40,000 units once every five days
----------------------------------------------------------------------------------------------
Actually, I like this idea because it is so much more in tune with how I USED to manage my doses, AND it gives me added benefit of not dosing on my DAMN pegasys night, which I've got to tell you is putting me in so much pain I can barely take it.

At some point in the future I will be on point again and then I can go back to a management system where I am keeping myself at the benchmark.  That will be nice.  I can work with pain.  I can't work with exhaustion.  (well ok, nausea isn't a real work incentive either).  But just not being exhausted really improves my quality of life on this tx.  Of course all of the sides are rough, but when you are tired out of your mind, the other sides seem overwhelming.  With my count where it is now even I am just doing scads better.  Gonna run down to the clinic in a little while and get my latest and greatest blood test.  Will see you guys later ;)

[alagirl]

Kcrandy/Xenigma - Good luck to you guys!

To all the rest of you! Have a lovely Saturday and I will talk to all you (or whine as the case may be) later ;)

[alagirl]

On that site, which are the smaller (thinner) needle tops?  The 18 gauge or the 21 gauge?  Yeah yeah, laugh it up, lol I'm girl.  No smart axx answers either, or I'll come over there and punch a hole in Jenna with one of 'em ;)

[mikesimon]

Epogen = generic Procrit ??? That's the first time I ever heard that.

In the 1980s, Adamson, Eschbach and others helped lead a clinical trial at the Northwest Kidney Centers for a synthetic form of the hormone, Epogen produced by Amgen. The trial was successful; its results were published in The New England Journal of Medicine in January 1987. The study authors were Dr. Adamson, Dr. Joseph W. Eschbach, Dr. Joan C. Egrie, Dr. Michael R. Downing and Dr. Jeffrey K. Browne.

In 1989, the Food and Drug Administration approved the hormone, called Epogen, which remains in use.

EPOGEN and PROCRIT are identical at the molecular level. Ortho provided
financial support to Amgen for the development of erythropoietin as a
therapeutic. In return, they obtained licensing rights to market the
drug for all indications in the U.S. other than kidney dialysis.  

In fact, fairly often hospital pharmacies only carry one of these two
products, so PROCRIT can end up being used in dialysis patients or
EPOGEN in AIDS patients.  The two companies have a agreement on how to
compensate each other for such "out of market" sales.

John Philo, Protein Chemistry
Amgen Inc., Thousand Oaks, CA

[alagirl]

Ooops. Sorry, Mike.  My bad.  Kind of bizarre but yep.  They are both the exact same epoetin alfa, and both name brands.  Don't quite get how both companies market them at the same time.  When I first started taking it, my doc wrote me out a scrip for procrit, this was several years ago, and I got epogen from the pharmacy instead so I assumed it was the generic form of the drug.  Learn something new every day ;)  Here's an article about it below:

http://www.medicinenet.com/epoetin_alfa/article.htm

[alagirl]

I really saw that coming back then, and tried to warn -- but to  have listened to a stranger on the net would not have been a rational choice.
----------------------------------------------------------------
Well, although I was cavalier, I wasn't THAT cavalier, LOL - I did predose with all the epo at my disposal.  For which I will always be eternally greatful to for suggesting, AND I upped my cbc's from once a month to I think it was once a week the first couple of weeks then twice a week thereafter.  (Used to do them twice monthly).  Some "strangers on the web" seem a lot more credible than others.   You seemed pretty credible.

I think what I meant by cavalier is that I thought increases in procrit would respond quickly, like I was used to.  Ha!  Not even...  lol

However, back then my entire case was 40,000 units and they gave it to me once a month.  So I gave myself all the vials I had left and they I was unfortunately out of epo.  And by the second week or whenever I started dropping, I had to get the referral over to the hema, yadda yadda yadda.  But in retrospect, I would have had them refer me prior to even starting therapy.  Although quite frankly, given that back then I had that stupid nurse practicioner to deal with... not sure it would have happened.

[alagirl]

uggh!  This new "keyboard in the bed" thing is not working out well (I broke my laptop).  What I MEANT to say is that I'll always be grateful to you for warning me to pre-dose at least with the epogen I had on hand, and to up my cbc frequency faster than I normally prob would have done, and also for letting me know (along with Debnevada) that the hemolysis starts happening fast, sometimes in the second week.  I'd been thinking it would be a slow process over a matter of weeks or months.

As bad as my blood count got, if I hadn't done the pre-dosing I was able to do and watched my blood count like a such a hawk early on per your suggestion I wouldn't have even KNOWN to get over to the hema and start the higher epo when I did.  It wouldn't have just been transfusionville, it prob would have been "off treatment."  So never think you didn't help or that your warnings fell of deaf ears because truly, you and Deb have both gotten me through a world of pain these first weeks.  (Now if you guys could just get me over this frickin physical pain, geesh)

[jmjm530]

Easy enough to confuse. epoetin alfa (epo) is the generic. As to the needles, the higher the gauge, the thinner the needle.

I'd check to see what I used, but the only ones left are big, long suckers for IM B12 injections.

I'd ask the pharmacist (local or online) what the guage is for insulin needles and use that for the actual injection. Then get a bigger gauge to draw up the epo. And, of course, you want a sub-q length, not the longer IM ones. As to barrel size, I think I used a 2CC, can't remember, as it afforded xtra barrel room to suck up the 1CC contents of the epo vial. Also, easier to get my hands around. As mentioned, the needles and barrels aren't all that expensive, so get xtras and maybe try a few different size needles. You will be amazed at the difference a virgin needle will make, plus all that swapping out adds color and interest to the ritual :)

-- Jim

[jmjm530]

Here are a few of 'needle talk' threads from the past. Check out the post from yours truly in the first and from "Grand Oak" in the second. And the third post from '05 deals with dosing issues, although as stated I found the easiest way for me to tweak dosing was to inject 40,000 units but alter the spacing between injections from 5-7 days.

And now that it's starting to come back (like a bad dream ;) ) --  at earlier points I sometimes did 14 and 10 day intervals, although the 14 day intervals were what got me into trouble. But I do now remember that 3/8" is the length used for Pegasys, so that would be my choice for Procrit as well.

http://www.medhelp.org/forums/hepatitis/messages/42485.html
http://www.medhelp.org/forums/hepatitis/messages/42580.html
http://www.medhelp.org/forums/hepatitis/messages/39465.html

[kcrandy]

thank all of you so very much.  i have printed off all of your responses for absorbing all of it thru my fogged brain at short intervals if you know what i mean.  :o)

i will check with my va  and see if there is a hemotologist on staff to help make sense of all the blood test and see if it is possible to be on a more structered doses of the epogen.  

i  will also let my doc read some of the valuable info you all have given and see if it is possible to receive the test from johnson&johnson, for my own peace of mind (whats left of it ).  

also whoever the needle persons were, thank you; you have given me some good ideas for future injection sites.  just for fyi when i inject on my thigh i find that pinching the sight while putting the needle in helps, and by finding the loose area on my thigh during injection helps with the burning.

to all of you may you have a great holiday and (as in my case) may all the turkey you eat give all of you a wonderful peacful claming sleep as i believe we all deserve.

happy holidys all.  : O )

[scratchinghead]

Hope this finds everyone in realtively good health and spirits today.

-- Jim

---------------------------
I almost fainted after reading all this needle stuff. I must be a real weenie. Sure hope they invent something else before I have to treat. Don't think I'm gonna find a girlfriend that is a nurse.

[alagirl]

Jim -- re: at earlier points I sometimes did 14 and 10 day intervals, although the 14 day intervals were what got me into trouble.
-----
You know, with "regular" normocytic anemia, at least anemia of chronic or unknown disease, the type I have usually when I don't get the extra helping of hemolysis on the side, the ten and fourteen day gaps are reasonable, so its not so weird that you would try spacing it like that.  This hemolytic anemia via riba induction is just way intense.

It is such a strange thing to me that before, I could have an hgb of 8 or 9, and yet take maybe 8,000 or 12,000 units ten days apart and my blood count would rise rapidly and I could easily stabilize it at about hgb 12.5 and just keep it there by dosing every couple of weeks, sometimes narrowing it to less time, sometimes throwing in an extra vial or deleting one, but still, I could keep it at the same hgb with a much more casual approach just by watching doing cbc's every two weeks or so and watching my reticulocyte count.  It was such an easy anemia to manage.

Now my reticulocyte count is always on high, full force.  I take more epo in a week than I used to take in months.  An entire vial now contains what I used to get in a complete box of ten vials.  Those old vials were 4,000 units each.  Now I'm taking vials that are 40,000 units each.  And even with all of that epo, it still takes weeks to see the effects (but only hours to start feeling the pain unfortunately), and once I get to where I'm going, I still don't know for certain what it will take to keep me there.  

I mean, I've got some good educated guesses, and I've got great anecdotal wisdom from you and a few others and I'm hopeful my body will kind of follow suit, but still, there's a huge question mark for me on what kind of control I'm going to have on an ongoing basis over my red blood cell lines.  I'll feel more comfortable I think in another three or four weeks or so when I have some more history and by then I'll hopefully have "peaked," reduced to the stable point, figured out what dosage at how often keeps me there, and stabilized.  Hopefully.  That's my fond hope and dream anyway.  Lord knows we all need a dream...

Scratchinghead: It's hard for me to remember all those years ago when I was afraid of the syringes.  I think it was back when I was a teenager and had to take allergy shots.  I would sit there and stare at my leg forever and then I'd play "chicken" with my own thigh, trying to gear up to jab it in.  Eventually I'd either do it or I'd end up driving to my mom's house so she could do it for me.  Then later with my migraines frequently we had a bottle of nubain at the house and after a while I got tired of having to have someone drive me out to my parent's house every time I had a migraine.  And when I was in that much pain sticking a syringe into my thigh just didn't seem so scary anymore relative to the pain I was in, so I think that's probably how I first really got over my fear of giving myself an injection.