|
From
Betty
I
cleared the virus
over 2 and a half
years ago, but still
have cirrosis. I
get an adominal MRI
every 5 or six
months. When I
started treatment I
was 3/4 with early
cirrosis. After my
last MRI in December
07 my doctor said
there's no
significant change.
Do you believe that
cirrosis without Hep
C can reverse
itself?
Hi Betty, it's
great you
cleared. An MRI
alternating with
ultrasound every
six months is
needed to screen
for
hepatocellular
carcinoma (HCC),
liver
cancer. These
tests do not
monitor the
stage of
cirrhosis/fibrosis
because they are
images of the
liver. Only a
liver biopsy can
provide
information
about the
liver's
histology (cell
make-up). Also
an AFP tumor
marker ( a blood
test) should be
performed yearly
as another
screen for HCC.
We know that the
liver
regenerates in
the absence of
HCV and alcohol
consumption. It
is estimated
that it takes
10-15 years for
a liver to fully
regenerate.
Rather than
focusing only on
images of your
liver, you need
to look at your
liver function
blood tests and
blood counts as
well as how you
feel, and what
your provider
finds on exam.
These will
provide a
picture of your
ongoing
improvement. Areas
to note are,
your ALT, AST,
bilirubin,
albumin,
platelet count,
PT/INR, your
energy level and
your general
feeling of well
being.
If these are in
check, your
liver is healing
and renewing
itself.
Good luck to you
and God Bless,
|
|
|
Hi all,
Wondering if anyone out
there has gotten pregnant while their
partner is on interferon meds? I understand
they can cause defects in baby but has
anyone out there came out with a healthy
baby? Im not pregnant but my hubs sis asks
us and I really do not have an answer. I
just tell her we cannot get pregnant while
on therapy.
Thanks!
Carissy
Hello Carissy,
Unfortunately, we don't know enough about
the long-term effects of paternal exposure
to ribavirin. It is believed that ribavirin
accumulates in sperm in concentrations high
enough to induce defects. In animal studies,
ribavirin produced changes in sperm at
varouis doses. These findings automatically
triggered a black box warning.
There is a registry by
Kendle International with an effort
to accumulate data on woman exposed to
ribavirin during pregnancy:
http://www.ribavirinpregnancyregistry.com/
Below is
information from a report in PubMed:
"Although either
ribavirin or interferon alpha could damage
human embryos, no adverse effects have been
described among offspring of women or men
treated with combination therapy in the few
human pregnancies where we know fetuses were
exposed. No epidemiologic studies of
paternal use of ribavirin alone, interferon
alpha alone, or ribavirin–interferon alpha
combination therapy have been published.
Some case reports have described paternal
exposure to ribavirin–interferon alpha
within 6 months of conception.Out of seven
men exposed to ribavirin–interferon alpha
combination therapy (doses varied from 600
mg/d to 1200 mg/d) described by De Santis et
al,
six had fathered
pregnancies within 6 months of discontinuing
therapy. No offspring had congenital
defects; one aborted spontaneously. Seven
healthy babies were born (one patient had
twins) with no complications during
pregnancy or follow up, which ranged from 3
to 14 months after delivery. Conclusion: Four
case reports
showed no
congenital malformations. Within the four
reports, there were 12 healthy infants, five
miscarriages, and two therapeutic abortions.
Although ribavirin is a potential teratogen,
there seems to be no immediate reason for
terminating pregnancy when a father has been
exposed to it. These pregnancies can be
continued under close monitoring, for
example, with level 2 ultrasound scans"
Here is an article for further information:
http://www.intmedpress.com/Journal%20Management/display.cfm?viewinfo=3F74516309514A2F1B441B00401A641526542A285845171F074401400D31545E1A
0C11464F275232551A155E1602110648545E07104209330C52
Good luck to you and God Bless,
Donna Fanelli
HI All
Today would have been my
3rd injection. I just completed my 2nd week
labs this Wed.
The NP told me late
Thursday I would have to stop the interferon
(I can continue the Riba) until my WBC(?) or
ANC (?) counts come up - they're at '78 or
780' - I'm not sure of the numbers. But she
said my counts borderline.
They ordered neupogen -
which may arrive next week - sometime -
if I can afford the copay.
I want to stay safe - but....
How will the reduce
dosage of peginterferon affect my chances of
becoming UND?
Why can't I continue the
shots and take the neupogen when it comes -
since my counts are on the 'borderline' and
not severe.
At times I'm a little
foggy so I may have misinterpreted this -
but last night I read a study (2003) on
Janis about this - it doesn't' seem to be a
good idea to interrupt the interferon - go
on the Neupogen - wait until the counts come
back up and then start the interferon again
- as it may reduce a person's chances for
svr.
All other labs are fine.
I'm G1/stage 1/grade 4/18
thanks
MUASI
Hi Muasi,
Yes, what you
read about dose reduction and your reduced
chances for SVR are correct. However, since
you are so early in your treatment, the
interruption can be used to your advantage.
First, once you start the PEG Interferon
again, that should be considered your Week 1
and continue on for 48 weeks. Remaining on
the ribavirin until you are approved for
Neupogen will actually rev-up your immune
system up so that when you do take your next
injection, you will have a better viral
response….you may feel more intense flu-like
symptoms after that shot.
The ANC
(absolute neutrophil count), is a
measurement of this certain type of white
blood cell in your circulating blood. These
cells fight off infection and if the count
gets too low (below 500), you are at risk.
The interferon does reduce this count, but
you have billions stored in your bone
marrow. The job of the Neupogen is to
signal the bone marrow to release these
neutrophills into the peripheral
circulation, which will occur within 2 hours
after the injection. Your ANC count will
increase (up to 10,000) and you’re all set
to re-start the PEG interferon.
For my
patients, I usually prescribe 0.5 ml (150 ug.)
1 day before the PEG and another 150 ug.
dose 2 days after. This prevents the yo-yo
effect on the ANC.
Good luck to
you and keep us posted!
God Bless.
Donna Fanelli
Hi Donna,
I was wondering if you
know if Ketorolace 10mg every 8 hours can do
harm to someone with liver disease?
Thanks,
Listmaker
Hi
Listmaker,
Ketorlac
(brand name Toradol) is a strong NSAID. It
negatively interacts with some medications
and should not be taken with others. Short
term, it is relatively safe for the liver.
It is more damaging to the lining of the
stomach and could result in a bleeding
ulcer.
It should
not be used for more than 5 days and you can
read more about it on this link:
http://www.migraines.org/treatment/pro_tora.htm
Good luck
and God Bless.
Donna
Fanelli
Hey everyone, I'm a 2 1/2
yr. transplant. my problems stem from
blockages or strictures of my ducts. i
cannot go but about six months before
needing a procedure to open these blockages
up. now i'm at the point where i can onlt
have the prt done. has anyone advice on what
i could do. my transplant was done at music
in Charleston, sc but i am more than willing
to travel to get some decent care and
answers. needless to say, i'm not a big fan
of the radiology dept. there. you are just
another # walking through, and all of them
act like primma donnas. the radiologists and
liver transplant team don't seem to work in
unison. any advice would be greatly
appreciated. thanks in advance.
Hi Tom,
I hear your frustration.
Your situation is not uncommon in light of a
transplant because there was an insult high
up in the bile duct close to the liver.
Blood flow to the bile ducts around the
liver is diminished resulting in strictures.
Repairing the strictures is very complex.
Finding a segment of normal bile duct is
often extremely difficult because of
associated injury to their blood vessels
post transplant. I assume this is why only
one port can be done at a time.
You need to bring these concerns up to your
clinician. Don't leave the office until you
have an understanding as to why only one
port can be done at a time. This is your
right and the clinician’s duty!
Stay well and God Bless
Donna
Hi Donna,
Could you explain why 5
yrs. ago, I was told that my genotpe was 3a
but now I am told it's 1a. How come the
tests for genotypes doesn't pick up any/all
types that are present. How do I know if 2
genotypes are all i have and what does it
mean?
Thanks, Cindy
Hi Cindy,
It is
possible to be infected with multiple
genotypes, meaning you were exposed to both
viruses at different times. Were you treated
5 years ago? If you cleared at that time,
it's likely you were re-infected.
There is a
slight possibility that the the older result
may not have been performed by the more
advanced testing assay that's used today.
You should
be evaluated closely and definately consider
treatment.
God Bless,
Donna
Fanelli
|
First
Post
I was dx in 2001 when
they found R pleural
effusion, i have told my
story here several times
and everyone is so
great. I went back to
specialist, hepatologist
and this was 3rd visit
since I started having
bad symptoms from c
severe pain under my
ribs, bloated, digestive
probs, more fatigue,r
lung full of fluid, drs,
at home town nver could
figure if my effusiion
was from liver, so since
symptoms started bad 3
months ago i went to
specialist in Dallas. He
says now that my labs
arent tnat bad, my viral
load is over 150
million, ast and alt
elevated but not real
high. My biopsy in 2001
was 3/3 with bridging
fibrosis. I cant believe
he dont want to treat,,
i know he said pulmo
needed to figure out
what to do about lung,
due to the docs before
drained it too many
times and occluded it.
He took me off work FMLA
3 months, gave
diuretics, fluid
restriction. I am at my
wits ends, i dont
understand he is a
tranplant doc and knows
bout hep c i just dont
know what to think about
he thinks lung is worse
than hep c. He is not
dong biopsy,WHY any help
I would be most
grateful.
Second Post
Hi Everyone, I have been
at this site for a month
now and learned lots and
know that yall are
genually concerned about
this disease and the
journey of hep c, I just
cant seem to find anyone
with the same probs i am
having, maybe i am not
reading in all the right
posts, but i have
emailed several people
that post a lot and have
not recieved any
response, no its not all
about me or is it a pity
party, I am just asking
because I dont know, if
yall remember i was dx
in 01 3/3 bridging
fibrosis, but had
pleural effusion (fluid
on R lung) docs kept
doing pleurodesis
draining fluid and could
not say if it was from
my liver. This went on
and off for 8 yrs, the
first 4 months chest
tubes etc and hep c put
on back burner, i got
well enough to go back
to work and did not have
outstanding symptoms of
c. Then 4 month ago hit
me hard fatigue,
bloating reflux probs
pain under r ribs and
all we experience, i
also had fluid again on
lung, remember they had
still been draining lung
during all this time due
to reoccurencce. Now my
hepatologit and pnuemo
docs said ( new docs)
that the drs before had
went into my lung too
many times and is
occluded (entrapment)
and much scarring over
membrane. Now they tell
me I have portal
hypertension, cirrhosis,
which was very kind of
them to tell me over the
phone 150 miles aay.
They say they cant due
any thing with liver
until lung is better,
but they seem to have me
on hold, and think like
i should not be so
concerned with liver,my
viral load over 150
million enzymes not bad
at this time ast alt
elevated some but i have
read where your liver
can become so
decompenated that your
blood levels will not
show elevation, he is
not doing bx, i go to
him tomorrow and i want
to demand some answers,
i am on FMLA and need to
do somethng and have
some answers, I feel
maybe they think I am a
hopeless case, I stay in
bed mostly pain and
coughing till i am SOB.
Sorry for long post but
I am happy for yall that
are tx and have tx and
my prayers do go up for
all and for this site I
found.
Hi Lee,
Thank you for
your questions. You are
a very complicated case
and should be managed by
clinicians at a large
university affiliated
medical center. You
need a published
hepatologist conferring
with a published
pulmonologist. In all
likelihood, your lung
problems are a result of
your liver not working
properly. Please ask
the clinician to sit
with you, go over your
lab work and imaging
tests and explain to you
exactly what's
happening. Don't be
afraid to ask what are
your options to maximize
your quality of life and
to get you well. I only
have a glimpse of your
story, but I assume that
you are on different
medications and a
treatment plan is in
place and please Lord,
you're not drinking
alcohol. Advocate for
yourself or ask a family
member to help you
understand what
treatments are available
and don't be afraid to
ask questions.
Keep us posted
and God Bless.
Donna Fanelli
Donna J. C. Fanelli,
MSN, NP-C
Director of Clinical
Operations
Primary Health and
Wellness Center, LLC
250 Millburn Avenue
Millburn, NJ 07041
From Venessa
I've posted this same
question on different boards
on the internet, but wanted
to get more info if
possible. My concern is with
the trasmission of HCV and
toothbrushes.
I mistakenly used my
husband's toothbrush
recently. He has HCV. In the
past his gums have bled, but
not lately. My concern is
that when I used his
toothbrush, I had a canker
sore inside my lower lip. If
he had any blood on his
toothbrush, how great is the
chance that I could have
become infected? I've read
that transmission via this
route is pretty low, but I'm
concerned that it could be
greater due to my canker
sore being an open wound.
I plan on getting tested,
but there's a bit of an
incubation period, so I've
got to find something to
keep me sane in the
meantime. I've been so
worried and stressed over
this for the last few days.
If anyone (esp. a medical
professional) can offer some
information that can help
ease my mind, it would be
really appreciated.
Thank you so much for
reading and helping.
Vanessa
Hi Vanessa,
I truly understand your
worry. For the HCV to be
transmitted, infected blood
must come in contact with an
open sore or wound and be
carried through the
circulation. Unless your
husband was actively
bleeding, did not wash his
toothbrush and infected
blood cells (every blood
cell does not contain HCV)
traveled through your sore,
the risk of transmission is
extremely low. Get tested
6-8 weeks after suspected
exposure, and then again 6
months later. Take notice
of any flu-like symptoms you
may experience and remind
your husband to keep his
personal items out of arms
way.
I think you'll be fine.
God Bless,
Donna Fanelli
From robbaml
question for Donna...
hi donna, im a 56 yr old
male, contacted hep c in
1972, over 36 yrs ago. my
biopsy in FEbruary 2007 said
i was grade 2, stage 2....
HEP C 1A, i started TX in
March 2007. i treated for 31
weeks....starting VL was
8.2million...i came off TX
in OCTOBER 07, with a VL of
300. i did not become UD at
anytime during TX....
I now wonder whether it was
the correct decision. what
do you think? And how do you
suggest i TX next time i do
TX.
i plan on treating again
sometime in 2009 after my
daughters OCTOBER 2008
Wedding..
right now i try to eat
healthy, use milk thistle,
centrum silver multi vitamin
and omega 3 fish oil.. i
also drink a lot grapefruit
juice because i read it can
slow down the progression of
the hep c virus..
i also read that the disease
begins to progress quicker
the older we get and the
longer we've had the
virus...is this true and how
can i prevent the
progression of this
disease...
Donna you are a godsend and
i appreciate you taking the
time to answer our
questions.
thank you
ron
Hi Ron,
It sounds like you're doing
all the right things; just
watch the grapefruit juice
as it can interact with
certain medications…but not
with the vitamins you
mentioned.
You came so close to
clearing the virus. A few
years back, 300 would have
been considered "negative"
because the assays weren't
as sensitive, that's why the
relapse rate was higher back
then.
Yes, the disease steadily
progresses with age, because
the ability to resist
diminishes as the body
wears.
There are definitely some
treatment strategies that
can be considered your next
go around. You want to see
a viral count of 300 or less
by Week 12, not at Week 31.
You may benefit from
starting the ribaviin 2
weeks prior to starting
interferon, and you may want
to consider daily consensus
interferon (Infergen) for
the first month or as long
as tolerated and then switch
to PEG interferon. You also
should discuss with your
clinician about extending
treatment beyond 48 weeks.
There is never a guarantee
of SVR, but during the time
of viral clearance, the
liver will begin to heal.
Look forward to the role of
Father of the Bride and have
a great time, consider
re-treatment before the
grandchildren are expected.
God Bless,
Donna Fanelli
Denise (PDRSHome)
I am a geno 1a. Just did tx.
for 2nd time around. I was
UD at 12 weeks. I just did
my 6 mos. pcr and happy to
say I am still undetected. I
certainly am not trying to
sound negative but would
like to know if my chances
are good for svr at this
time? My doctor said we
would repeat pcr in one
yr.but I personally want to
repeat it in 6 mos. This has
been great news for me. Have
people been undetected at
6mos only to have the virus
ever come back?
Thank you so much,
Denise
Hi Denise,
Congratulations! Enjoy your
success. The only patients
of mine that had detectable
virus after SVR actually
re-infected themselves…they
had a different genotype.
The take home message is to
maintain a safe and healthy
lifestyle and avoid the
known risks. I don't believe
you need to be tested again
before a year's time. If
you insist, speak to your
clinician. And stay well.
God Bless,
Donna Fanelli
GAYLON49
I was diagnosed with HCV
last March and started the
treatments in June. After
11, treatments I lost
partial vision in my right
eye and the after 14
treatments it happened to my
left eye... I have been
diagnosed with optic
neuritis and had to stop the
treatments
that was in Oct of 2007 and
now it is May 2008 and I
still don't have my vision
back, has the happened to
anyone out there and can
you give me any hope for my
vision
Hi Gaylon,
I am so sorry to hear about
your outcome. Why wasn't
treatment immediately
stopped after you had a
problem with your right
eye? Yes, optic neuritis is
one of the rare side effects
of combination therapy and
should be treated. Most
cases clear over time after
a course of prednisone, oral
or IV. However, I had a
patient who never regained
peripheral vision in one
eye. Find the best retinal
specialist in your area and
schedule an evaluation. My
prayers are with you.
God Bless,
Donna Fanelli
From memphismorni
Donna:
1A non-responder with mild
scarring and liver functions
are still in the normal
ranges
Being treated twice and
relapsing my doctor says
that the Vertex treatment is
not for me. The only other
trial I have seen available
was for naive patients only.
What is left for those like
me that are not responding
to the known treatments?
Thanks for your time, Dale
Ps my first treatment in 98
was interferon and the
second in 2006 was pegasis
and copegus. Sorry for the
poor spelling
Hi Dale,
Hopefully Vertex will be on
the market in 2 years. I
know most of the clinical
trials are studying response
rates in naïve patients. I
believe there is one study
that is studying HCV with
hepatic impairment and
telaprevir (Vertex). Look
at
clinicaltrials.gov
and
centerwatch.com
to follow new studies that
may be enrolling. Sounds
like you have mild disease
and within 2 years may not
have to worry about
enrolling into a trial to
try. Vertex.
Good luck and God Bless,
Donna Fanelli
From
dalesar
Hi,
I did peg-intron treatment
in 2001, cleared the virus,
but still feel like I am on
treatment every day. Do you
know if anyone is
reasearching this problem?
Chemobrain, body aches,
sometimes I can't walk.
It's pretty scary.
Thanks
Hi Dalesar,
It sounds like something
else may be going on.
Discuss these symptoms with
your PCP. You may benefit
from a rheumatology
referral.
Good luck and God Bless,
Donna Fanelli
|
|
HI Donna,
I asked this in the
general "concerns" forum and was referred
here as no one was really sure.
Undetermined Genotype
result was from test = Hepatitis C Viral
Genotype, completed about 10 days ago.
Good Afternoon,
This is my first post and
have been recently been diagnoised with HCV.
I am going through the initial blood work
and was told that my Genotype was
"undetermined"
I was able to find on
article that stated if Genotype can not be
determined, will be treated as 1.
Any ideas on this?
Hi HB,
Yes, an undetermined genotype will be
treated as a genotype 1, just to assure the
best outcome.
You may want to ask your clinician to repeat
it and send the specimen to another lab.
Over the past few years, more advanced
diagnostic tools have been able to better
identify the genotype and you want to make
sure the most advanced testing was performed
on yours.
In any event, you have about a 70% chance
it’s a genotyye 1 and in addition to
genotype, there are other factors that
should be looked at to guide the treatment
regimen.
God Bless,
Donna Fanelli
Hi Donna,
I am HCV geno 1B on week
28 or 29 of treatment. I have been UD since
week 12. I also probably have
Cryoglobulinemia although the GI never
confirmed with test, he just says yeah
probably.
I was originally diagnosed
with Rhuematoid Arthritis due to a high RH
test result. I also had pain in most of my
joints and swellings on knees and my
knuckles. I was sent to a Rhuematologist who
said the swellings I had on my joints were
not in the right place for RH and he did
test for HCV that came back positive. I was
sent to GI for HCV. Tested for HCV and
started on Treatment of 180mcg pegasys and
1200mg ribaviron. Ribaviron was decreased to
1000mg around week 13 or 14 due to breathing
issues. I am UD and have been since week
12. Since about week 15 of treatment I have
had very little joint pain and have started
to resume some of my preillness activities
although I still require at least 12 hours
of sleep a night. This is true except
for Wednesday (day after shot) and the 3
days before my period starts. During those
days I experience extreme fatigue(20-22
hours of sleeping) and extreme discomfort.
My belly bloats up so badly it sticks out. I
get recurrent and extreme diahrea. The
swellings on my knees increase in size. All
my joints ache, I get nauseated and I
generally feel like I have the flu. By the
second day of my period I seem to be back to
normal again. The day after shot I
understand and expect. But, would either HCV
which is currently UD or treatment cause the
period week issues or could it actually be
something different? How much does treatment
and/or HCV really effect womens cycles?
Thanks for any info you
have on this issue.
Bette
Hi Bette,
It sounds like you’re doing great! So often
treatment makes underlying RA symptoms
worse. In your case, your joint pains were
related to viral infection and have
improved. To answer your question, yes
combination therapy will cause menstrual
irregularities. It’s not uncommon to have
menses to cease altogether later on in
treatment. The body is compensating for the
drop in hemoglobin caused by the ribavirin
and sparing you additional blood loss. The
hormones are out of sync and will cause the
bloating and swelling.
Bring this up to your clinician and ask if a
very mild diuretic taken 1 day before the
anticipated day of your next menses would
help. Something like hydrochlorothiazide
12.5 mg may do the trick.
Stay well and God Bless.
Donna Fanelli
|
From D
Hi,
I have a
question for
Donna, and
thank you
for this
idea.
My husband
is on his
11th shot
this Friday.
He's in
extreme pain
with
arthritis/gout.
Is
practically
bedridden.
Nurse
Practioner
says no RA.
I know tx
makes bone
pain but is
this
normal? He
can't move
and if he
gets up for
too long a
time like to
take a bath
it's
excruciating
to him. Is
there
anything he
can take
that may
help him?
And how long
will this
last? And
can he
develop RA
while he's
on
treatment?
He's
genotype 1a
on 48 weeks
of tx. V/L
dropped from
600,000 to
350,000
first two
weeks.
Waiting to
see Thurs.
next V/L.
Had to take
two shots of
Aronesp when
his blood
bottomed
out. He's
57. Is
there any
foods he
needs to
avoid? Not
that he's
eating too
much now.
Thanks for
any help.
D
Hi
D,
It's
difficult
for me
to
evaluate
this
situation
without
seeing
your
husband
and his
labs.
PEG IFN can
induce RA
because
IFN
boosts
the
immune
system.
RA is an
autoimmune
disease
which
means
the body
mistakenly
thinks
it's own
cells
are
invaders
and
begins
to
attack.
My
advise
initially,
encourage
your
husband
to drink
at least
3-4
liters
per day
of
water.
With the
drop in
his
hemoglobin
(the red
blood
cells
ability
to carry
oxygen),
make
sure he
had an
EKG
and/or
stress
test
prior to
starting
treatment.
Also,
labs I
would
check
are
rheumatoid
factor,
ANA,
uric
acid and
an anti-CCP
(Cyclic
Citrullinated
Peptide
Antibody).
It
is
unusual
for
patients
to have
such
dehibilating
pain
while on
combination
therapy
and
other
causes
need to
be
investigator.
Keep
me
posted.
New
Question
From D
From :
myyonder
Donna,
thanks
for the
reply
back.
Found
out
yesterday
that
husband
is
UNDETECTED
as of
week 7.
Here is
some
labs
from
3/13/2008.
Hemoglobin
10.3
ALK
Phosphatase
129
Platelet
95 was
103 but
started
at 67
before
treatment
Hematocrit
30.8
WBC 2.7
RBC 3.20
AST 83
was 109
at start
ALT 44
was 130
at start
Labs
from
2/14/2008:
MCV
99.6,
MCH
34.1,
MCHC
34.2,
RDW,
18.7,
MPV,
8.9,
TOTAL
PROTEIN
8.0,
ALBUMIN
3.7,
BILIRUBIN,
TOTAL
1.4,
BILIRUBIN
DIRECT
0.3,
I'm not
sure
what
most of
these
are but
I'm sure
you
know. I
don't
really
know
what to
look for
but his
Nurse
Practioner
said
that
from his
blood
work she
can tell
it's
high for
arthritis.
She
still
says
it's not
RA. She
has
ordered
in two
weeks
Uric
Acid and
TSH. In
two
weeks
she'll
check
other
bloodwork
and
probably
give him
another
Aranesp
shot.
That
helped
last
time he
bottomed
out.
She also
said he
should
start
feeling
better
since
he's
coming
up on
shot 12
and his
body
will
stop
attacking
itself.
I have a
hard
time
believing
that.
Just
going to
see her
yesterday,
any kind
of
activity
such as
bathing
or
walking
puts him
in bed
for days
with
severe
pain.
She
wanted
to take
him off
treatment
yesterday
but he
refused
since he
found
out he's
undetected.
She has
said in
the past
without
biopsy
that he
is stage
3/4 into
cirosis.
He has
no other
symptoms,
ultrasound
on
organs
came
back
fine.
Whats
your
take on
that? I
realize
you
can't
make a
complete
diagnosis
without
seeing
him but
I
appreciate
any
input.
I wish
you were
here.
Sorry
for the
long
post. So
many
unanswered
questions.
D
Hi
Myyonder,
It
is
wonderful
that
your
husband
in
undetectable! If
his
symptoms
have
not
improved,
you
may
want
to
consider
bringing
him
to a
rheumatologist.
If
he
can
tolerate
the
treatment,
he
should
stay
on
it,
but the
extreme
side
effects
need
to
be
investigated.
You
don't
want
to
do
more
harm
than
good.
Without
a
liver
biopsy, staging
of
fibrosis
is
merely
a
guess.
A
liver
biopsy
is indicated
in
your
husband's
case
to
guide
treatment
decisions.
His
other
labs
appear
to
be
Ok.
I am
concerned
that
the
AST
is
83
and
the
ALT
is
44
(AST
is
almost
2X
ALT).
Is
he
taking
too
much
Tylenol
or
drinking
alcohol?
He
should
have
a
GGT
and
also
a
cardiogram.
Keep
in
touch.
God
Bless,
Donna
Fanelli
From:74gibson
I have
thought
about
for a
while,
maybe
might be
worth
answering.
I had my
Gall
Bladder
removed
4 years
ago
after
having 2
attacks.I
do not
have
high
cholestrol
nor am I
over
weight.
I
understand
the
Liver
produces
bile and
it is
stored
in the
Gall
Bladder.
Could
the
Hepatitis
have
caused
this
because
of
improper
functioing?
I do not
have
cirrhosis.
Recently
dx Grade
2 Stage
1.
Curious.Thank
you,
Carolyn
|
Hi Carolyn
Gall bladder
disease is
common and is
not usually
associated with
hepatitis. One
study showed an
increase in gall
bladder disease
in men with HCV,
but was
associated with
more advanced
liver
disease. At
Stage 1
fibrosis, a
liver is
functioning at a
nealy optimal
level and the
gall bladder
disease is most
likely
unrelated.
God Bless,
Donna Fanelli
|
|
|
Donna - My question is
this. I had a 4 week PCR run. My viral
load had gone from 1,050,000 to 139,000. My
dr said I was a "slow responder" and that
the 4 week viral load was the new standard.
I had hoped that I had misunderstood - but
since then I've done major reading. One
study jumped out at me (most agreed with the
4 week being the new standard :o( ) that
said for geno type 1's, at 4 weeks, if your
viral load is over 100,000, you have less
than a 3% chance of getting SVR. Do you
have any more information on this? I'm
going to stick it out for the 12 week viral
load (so many encouraging words from this
website), but if my chances really are less
than 3%....I am contemplating waiting for
the new meds or at least a clinical trial.
Thanks! Dottie
Hi Dottie
The buzz word for the past
18 months or so has been RVR, Rapid Viral
Response, meaning the viral count is
undetectable at Week 4. I have routinely
checked a PCR at Week 4 for awhile and now
it's pretty much the standard. Each
clinician uses the information differently.
Some studies suggest treatment duration can
be reduced, others predict an increased SVR.
The bottom line, a 4 Week PCR is a guide.
Yes it would be nice if you cleared at this
point, but there is no data to suggest you
won't achieve SVR. The study you're
referring to looked at persons with more
severe disease and I believe the treatment
regimen was sub-optimal.
The 12 Week PCR provides a
clearer picture, because there is more
literature looking at the prognostic
implications. I applaud you for sticking it
out until then. If you are 'almost
undetectable' at week 12, continue for
another 6 weeks. Sometimes tweaking the
regimen can yield better results. Assuming
you clear at Week 18, you should stay on
treatment for a minimum of an additional 36
weeks, preferably 42 weeks more. Again,
this is in light of minimal side effects and
the ability to remain on the maximum dose
with minimal risk. It is imperative
that you don't miss a dose of ribavirin, and
don't delay taking your shot…even a couple
of hours can make a big difference with
weekly Peg- Intron or daily Infergen. Drink
plenty of water, exercise and eat a diet
high in complex carbohydrates and low in
fat. Take Omega-3 fish oil capsules and you
will do fine. Good luck to you.
Keep in touch and God Bless,
Donna Fanelli
From
jenibjones
contradicting information. Those exposed to
'mucosa' from that of known infected person
should be tested??? I read that kissing is
not a major risk factor but the mucosa
is eyes and mouth. Now...tell me why that is
not a threat, kissing some one with possible
gum disease is a threat? There are levels of
gingivitis and periodontal disease, help me
under stand. My common sense tells me unless
you have excellent oral care...you could be
a higher risk person to give the disease to
another...for the record my mouth is very
healthy.
thanks..
may questions left....
Jenibjones,
Hepatitis C is a bloodborne disease; the
virus is transmitted by infected blood. HCV
is not transmitted via any other body fluids
unless those body fluids have been
contaminated with blood. Gingivitis, an
inflammation of the gum tissue surrounding
the teeth, often results in bleeding gums
because the tiny blood vessels rupture as a
result of the inflammation. For the virus to
be transmitted, the infected blood must come
in contact with an open sore or wound and be
carried through the circulation. Unless the
kissing results in trauma, the risk of
transmission is extremely low.
I hope
this helps. God Bless,
Donna Fanelli
considerate2
Thank you all for the replies. I am
going to ask questions as much as i can
once getting to the doctor and i am glad
i have this site. One question i do want
to ask: When a person comes back
positive for Hepetitis B and C, does it
make his chances for survival lower
because he has both verses just having
one.
Hi,
When you
say positive for Herpatitis B and
C, I assume you mean there is a
detectable virus in both. Having
both viruses is more difficult to
treat and depending on the liver's
resistance, survival may be
diminished, but this is very
individual. Both viruses can be
treated together and the Hepatitis B
virus will be treated a lot longer.
The Hepatitis B virus is often
controlled and not "cured", while an
SVR in Hepatitis C is a cure. I
hope I've answered your question.
God Bless,
Donna
General Question
Needle Stick while on the job
If exposed to HCV while four months
pregnant what are the chances of
passing the virus onto my
child.
Overall, the risk of vertical
transmission (transmitting the virus
from mother to child) of HCV is about 3
to 5%, and higher if the mother is
co-infected with HIV.
It has been reported that the
risk of transmission after a needlestick
injury on the job is 4-5%. Do the
math...5% of 5% … the relative risk is
very very low.
God Bless,
Donna Fanelli
From Francias
Here is the first time he posted on
the boards
Hello,
I've been recently diagnosed with
Hepatitis C. According to my test
results the Hep C virus RNA HPA
count is 915133 (A) and the HCV RNA,
ser/plas, PCR is 5.96 iU/mL and
Bilirubin, direct level 0.2. My ALT
level is 118 units/L and the
alkaline phosphatase is 46 units/L.
I have never had blood transfusion
in the past or used any type of
recreational drug with a needle or
even any type of tattooing or
piercing. But I was abusing alcohol
for a long period of time, which
affected my ability to hold
employment because I would drink
700ml of vodka or whiskey plus 3-6
beers on the weekdays and then end
up not showing up for work on
mondays. There would be three to
four days of binge drinking that
would knock me out.
My question and curiosity is the
high levels of ALT is due to
alcohol abuse for approximately
past ten years? could this be
alcohol related Hepatitis C. I have
completely stopped drinking now. But
I'm worried what these numbers
indicate. If someone could please
relate to this please let me know.
Could these results be inaccurate
due to my history of alcohol abuse?
How can I be sure this is not
misdiagnosed?
Second Time he Posted
So here is how I got my diagnosis:
Got a full blood check including
liver. Results show the following:
ALT = 120 units/L
With this I was asked to take
another test for all major liver
disease including hep ABC. The
results for Hep C. was reactive. I
just do not rememeber what the doc
said the kind of test it was. After
which I was asked to again take the
a live panel test but this time with
the quantitative PCR test. The
results was what I listed in my
promary message. I was referred to a
GI because the doc wasn't
knowledgeable in this field and
couldn't answer a lot of my
questions. My appointment in 3 weeks
and I am just outbusted on what is
going on here.
Here were my results for the liver
panel test and notice I do not have
AST?? I guess they didn't bother.
| Name |
Standard Range |
2/29/08 |
3/5/08 |
4/13/08 |
|
ALKALINE PHOSPHATASE |
|
|
49 |
46 |
| ALT |
|
120
H |
125
H |
118
H |
|
BILIRUBIN, TOTAL |
|
|
0.8 |
1.2
H |
Now what does justify me to have Hep
C? I know my VL is pretty high at
approx. 915,000 count. But does it
justify me conclusively I have HCV?
What does my PCR number 5.62 mean???
I canoot figure out how possibly I
could have caught this disease??? I
have an eye surgery 21 years ago and
dental work at a student dentist
facility that possibly could have
mishandled some of their materials.
This was in Paris France...
Well anyways before I go to my GI I
want to learn as much as I can about
HCV as I can. I am with Kaiser in
CA. Do you think they will drop me
if I have this? How much will I be
llooking at spending for treatment
(getting the medicine?).
I guess the next step will be to
figure out my genotype. To begin
with what exact bllood test
competely proves me HCV?
What are the exact steps? What are
treatments available for a high VL
like mine? I mean I feel perfectly
fine thank goodness.
What can I do to lower my VL? Only
medication? How about ALT, Bilirubin
counts?
PLEASE help me understand.
Thanks,
Hi
Francais.
I
don't believe you're focusing on the most
significant part of your story…your
recovery. Your accomplishment empowers you
to manage the remaining chapters.
Congratulations!!
To
answer your questions: your former alcohol
abuse has little to do with contracting the
Hepatitis C virus. You may never know for
sure how and when you contracted the virus,
and the uncertainty should not interfere
with your ability to address the problem. A
misdiagnosis is unlikely, the blood results
speak for themselves. A positive HCV
antibody indicates exposure, and a viral
count shows active disease. Your count of
915,000 is moderate. I have treated
patients with more than 50 million. A high
viral count doesn't mean worse disease and
the reverse is also true.
Your
ALT is elevated, but your bilirubin and alk
phos are in the normal range. It's unclear
as to why you don't have a result for the
AST. All of these values provide a one
dimensional current picture of your
liver function. A more detailed piece of
information can be obtained from a liver
biopsy which actually looks at a small piece
of your liver tissue. It is also important
to learn your genotype. This is the "type"
of Hepatitis C virus you have and basically
denotes the route your virus takes to
replicate itself and can provide more
information about your ability to respond to
current therapy.
No insurance company should
deny paying for your treatment at this
time. If you have a problem, please contact
me personally, and I'll advise you.
Search the Janis and Friends
site. The information is as accurate as it
is up to date. Remember to get vaccinated
against Hepatitis A and Hepatitis B. Keep
in touch, ask questions and praise your
success.
God Bless,
Donna Fanelli
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