First of all, everyone is different and nothing is guaranteed.  My first
round of tx I never missed worked and very few side effects.  Second
round of tx I did have side effects.  I missed very few days of work on
both occasions.  The physical effects were more evident in the beginning
of tx, but over time the psychological effects became increasingly more
problematic, it just starts to wear you down.  The more you can relax
the easier it is to withstand tx, at least in my opinion.  Go into tx
with the expectations of being different from everyone else, but be
prepared for what may happen.  BTW, your wife is right, most of your
problems come from being too damned old.  Of course that would be true
for many of us here. :) There seems to be a fairly large contingent of
us around the age of 48.  Welcome to the club, sit back, take your shoes
off, and stick around for a while.

Dwight (I'm 48 years old, but I won't be for long, time hurrys on)

Are you gonna do the peg/Riba tx? It's different for everyone. I only
did 3 months, was considered a non-responder and tx was discontinued. I
go for transplant evaluation soon. I wanted to try tx again,but my
gastro is leery about it. I drank a few times during tx and probably
screwed up my tx. Big time no no. Do NOT drink anything but water and
fruit juice. After awhile I practically lived on ensure and fruit. Find
a multi-vitamin without iron, cut WAY back on red meat and steer clear
of salt. Get labs done  as often as you can. If I were you, I"d start tx
as soon as possible. I couldn't start as soon as I should have
(insurance probs) Keep a sharp eye on AST and Alt, albumen and
prothrombin time. Get a biopsy, Cscan and hold on to your ears. WBC and
bilirubin and platelets need to stay close to normal too cause you're
doc will stop tx after 3 months if they're too far out of whack. I"m not
pushing herbs, but my nasty labs have not gotten worse because (I think)
maximum milk thistle. liver 52 and licorice root are keeping me from
croakin off. Investigate your a.s off.   This site has many people with
mucho knowledge and much more experience than i have. Stay in tune. Best
of luck to you. It sounds like you have come around early enough to beat
the beast. Brian

Howdy-

Sorry to hear you have it too. I am also 1a, 49 yo. I did the treatment,
Pegasys/Riba combo July 2003-June 2004.

For me it was a bitch. The first two months were ok, I managed to work for
about 3 months into treatment. I became anemic fairly quick, within a month
and was doing a lot of huffing and puffing.

I guess it was a slow spiral into a dark and strange time for me. At 4
months my thyroid went hyper, then in a month quit and I was hypo. That was
another illness brought on by the interferon that made my sides twice as
bad. The last 6 months were shitty. I don't want to discourage you but be
prepared for a possible rough time.

Your going to get cranky and moody. Make sure your wife understands you may
not be nice at times. Anti-depressants are a good thing right from the
start.

Severe migraines, nausea, I was very fatigued. My saliva glands dried up, I
was always drinking water, which is good. You need lots of water. Drink
water so your pee is clear.

It took a month after finishing treatment and I was feeling pretty good. 2
months after treatment I more energy then I had in years. About September,
that "old tired and sick" feeling came back. I found out Dec 1 2004 I had
relapsed. A pisser as I had responded well to the treatment.

Fatigue was the main reason I did the treatment. I was stage 1 on fibrosis,
minimal inflammation and was told it was up to me.

Today? I am back where I was, I get tired easier and it's noticeable. The
whole thing has me in a funk. I did a two month vacation this winter, a
month in South America and just didn't think about it. But now that I'm back
at home and back to work I have to face the reality of doing this treatment
over again, or wait for something else to come down the road, who knows
when.

Go for it, do all your meds and I hope you respond and kill the f.ckers. It
does work for a lot of people. Make sure they watch your thyroid!!!! Do your
research!!!! Be your own Advocate!!!! Be your own doctor!!!!! My BCLD (Big
Chief Liver Doctor) said my thyroid was fried and to get used to taking
thyroid replacement hormone. I said bullshit, were going to see if I can get
off of it.

Apparently he hasn't heard the word that some peoples interferon induced
thyroiditis can turn around and recover. Make them docs explain things to
you if you don't understand. Get copies of your labs and know what's going
on.

So far so good. I'm down to 50 ug (levothyroxin) a day now (last month TSH
2.14) and if the next TSH comes in ok I'll try 37.5 (75 ug cut in half) for
two months. If all goes well I may be off levothyroxin by next summer.

Good luck and Welcome to the group

On Sun, 27 Feb 2005 20:38:36 -0800, "Bond...James Bond"
<bz@ineed.info>, in message ID <270220052038367887%bz@ineed.info>, in
the newsgroup alt.support.hepatitis-c wrote:

Welcome to the NG James.
Tx is different for everyone.  I was quite well on it from weeks 3 -
7.  The rest of the time I coped - sometimes only just.  The first
shot was the worst shot.  After a few weeks the stuff just started
grind me down.  I worked part time (I'm self employed).  I did have
another part time job for a company but I told the manager to shove it
up his arse as he moaned about me taking a week off around week 7 (tx
makes some people bad tempered).  The main bits for me were fatigue
and a forever dry mouth.  I only drank 2 or 3 coffees all through tx.
Just water, water, and more water.  I found that tx gradually got
harder for me.  The last 4 weeks of it my head went a bit cranky.  I
was lucky though.  I had lots of good friends.  I also had genotype 2b
(which equates to 24 weeks tx) and a low starting viral load.  I was
clear a month after tx.  I am awaiting the result of my 6 month post
tx PCR.  The coveted SVR (sustained viral response) award awaits me
hopefully :-)  .  I would be very surprised not to get SVR but there's
always that little niggling room for doubt.  I had the test a week ago
and the results usually take 2 weeks to return.
I will be 48 in March too.
Best of luck with your tx.
I hope it works for you and that your side effects are minimal.

Welcome to the club....sorry you have to be here though.
Anti-depressants is not a bad thing to be on with the start of
treatment, in my humble opinion.  Even with that, I was
downright obnoxious on occasion.  Then I'd be surprised and wonder, "Where
did that come from?"  It came from
the ribavarin.

The first shot may, or may not be difficult.  Some people have no problem.
I had a high fever.  Not a bad idea to have a thermometer on hand, and
something for fever....if needed.   That is generally a one time reaction
for most.
Some people have very little problem.  So you can be optimistic.

Drink lots of water.....all day long.   Not bad idea to have something to
carry water around with you.  I kept an insulated mug, and bought a bag of
ice weekly just because it was easier than filling ice trays.  The fatigue
got to me.

Skin and scalp can become very dry. So, keeping hydrated helps.   There are
some good shampoos that may help.

I lost a lot of hair, but I also had a lot of hair, so no one noticed
besides me.  Reassuringly, it does come back.  Right now I have lots of two
inch hairs all over my hair mixed in with my shoulder length hair.  My
beautician comments on it everytime I get a trim.

Don't take milkthistle during treatment.  At least, most of us don't.  Off
treatment great, but they don't know if it might affect treatment or not.

You might want to get some basic things done before starting treatment.
Such as a haircut, driver's license re-newal (standing in line during
treatment is a @#$@).
Does your dog need a check-up.  Last thing I wanted to do was walk the dog
during treatment or take her to the vet for her check-up that came due  in
the middle of treatment.
Might want to go to the dentist and get any work that you need done, done
before starting. Treatment can be difficult on the teeth.

I didn't know before treatment, but apparently it isn't a bad idea to get
your eyes checked before treatment.  Automatic bill pay can be a relief when
one doesn't have the energy to look at bills.

Your wife will probably be a big help on things like this if she isn't
already.  Any last minute probjects around the house you want to get done
first?

Go to a movie, dinner, take your wife dancing, buy her some flowers.  You
probably won't feel like doing these things during treatment. You could even
buy her birthday present now so you don't have to worry about it later.

However, I'd take myself out to a movie on my best day of the week just to
get out of the house.

I worked thru treatment.  I started off after a few weeks taking Monday off,
then after a while, it was Monday and Tuesday, and during the last couple of
weeks, it was Monday, Tuesday, and Wednesday.  However, I know some folkes
go thru treatment and never use a sick day.

Once more, drink lots of water.

Last, keep coming back.  This group can give a lot of support and cheer you
on.
Oh, I'm type 2b.  I get my 6 month check up at the end of March. I'm happier
then I've been in years.  Apparently, the virus can affect the nervous
system and cause depression.  Still have other health problems, but I'm
working on those now.   Hoping for that coveted SVR.
Wishing you the best.
Susie

Hello and welcome.

I am at midway through my 9th week (of 24), genotype 3 and very low starting
viral load of only 9,500, I got an undetectable at the end of my 4th week.

I had loads of misgivings about starting treatment and if I am honest was
absolutely peftrified that I would be incapacitated, especially after having
read some of the stories. Treatment is different for each person.  I have
had very few physical side effects, in fact the first injection went so easy
that I thought I must have got it wrong.  My injections have subsequently
followed a similar routine with no flu side effects.

I am working full time, I weight train 3 times a week and swim 1,000 metres
daily. The only concession I have made is to take a year out on my MBA which
I was studying part time.  This was a good plan as I do need more sleep at
the moment.  The ribavirin is harder for me, and has dried out much of my
throat and nose resulting in frequent nose bleeds, though I have haemophilia
so this does contribute.

You ask if you will feel better - holistically no probably not, I certainly
felt better off treatment. Though I did notice that my night sweats and
liver pains stopped after about 2 weeks on treatment.

Good luck
Jonathan

How pretty much everyone else reacts to tx is all over the map.  Some
people get really sick, other people barely notice it.

I think the best thing to do would be to figure out in advance how you
will handle:

- not being able to work
- needing anti-depressants if your symptoms indicate them
- making sure your friends and family know you might get wierd and in
what ways, and how they should handle it

So you have the worst cases covered, and hopefully they won't happen to
you.  

It's always the scariest before the first shot....

Gordo

Good Evening Mr Bond
(I guess a Goldfinger  "I expect you to die" might be misinterpreted)

Long answer to follow, (full of my opinions)
my apologies in advance to all <BG>

Seriously
I'm 55, with 1A and on week 15 of 180ug Peg 1200mg Cope Combo
I'm one of those who  had only the most minor symptoms over these
weeks. I haven't needed any AD's (granted though I just started to
experiment with sam-E )

However I did NOT reach indetectible at week 12 and there is
at least some doubt about the 2 log drop. (I'm continuing TX anyway

So as always I try to tell beginners that they should realize they may
get some of the dreaded sides that others have experienced but they
may only have one or two and to a very degree (fatigue and rashes are
most common)  

But there is an element of mental stress just knowing that you have
been given this "gift"  Be prepared to exert a lot of willpower to
help keep your body and mind in best shape.  It will elevate your
mood and help you keep your eye on the prize,  SVR and killing this
"F"ing invader!

Some tips for a newbie, you are going to be getting a lot of info and
lab results etc. There is generally a reluctance to provide patients
with their documented labtest results (makes them ask questions)

You will likely have 3 Dr's involved
your primary physician,
Your liver specialist
possibly a RNP registered Nurse practitioner for you meds (TX)

Once you are on TX you will have frequent blood tests
weekly biweekly and eventually monthly

You want to make sure you get copies of your lab results!!
If you go to a separate lab ask for a "request to send/fax copy of
results"  form.  Generally they will only send these to a Dr.
My primary physician makes these available immediately (and is near)

The CNRP who is the requestor takes his damn time, and I prefer to
know the numbers before talking to him.  Hope that was clear?

In addition having the results for your own files , it will make it
easier to ask questions especially in this great group.

Other tips if you are to be taking Pegasys and
haven't received a starter kit go to their website
the have an 800 number for a free nurse 24 7
(actually mine was very knowledgeable supportive and friendly)

But ask them to send you both the free starter kitS
one is documentation, the other actual materials
It contains a video tape, travel case, Day of week pillbox
(very very useful!!!) a sharps disposal box etc (all good stuff)

www.peggassist.com  

There's some other useful tools aids and info on the site
   
If you use MS Excel I suggest you create a spreadsheet that will
allow you to add a new column of results after each test. All on 1
sheet is much better to see trends than pulling out multiple sheets.

Another tip from my personal experience
the Viral load tests(RNA PCR) are apparently expensive
you may find the Dr/ insurance co. reluctant to exceed the protocol
tests, Since you will be looking  for a 2 log drop at week 12 from
your baseline your baseline should be close to starting TX

Best accuracy is when the baseline is just before beginning TX.
If there is a significant delay before your baseline and commencing TX
(more than 3 weeks ) Insist or at least try to talk them into taking a
new baseline VL. It gives you a more accurate result in the case of
borderline results at week 12. (and could determine if they will
continue to pay for TX or not!)

If you exercise KEEP IT UP!! it actually helps keep down the fatigue
If you don't it's a good time to start a moderate exercise program
and physical activities.

The difference in symptoms may also have to do with age
as you get older you are more used to fatigue minor body aches, fog
etc  I can remember relatively dramatic change around 50 years
So it could be some of these youngsters are mixing "normal ageing
with Tx?

Booze, I dropped cold turkey from a minimum if 4 drinks a day to
and occasional Odouls and maybe 1 glass of wine a month at very most
(My liver is in pretty good shape)

My minor symptoms appear to be from the daily Riba,
nothing physically specific from the shots (not even the first)
The Riba gives me a minor flue like feeling, at most 2x daily.
(and all my counts have dropped below normal but nothing low enough
to reduce dosages)

I take a few Tylenol (careful not too much Tylenol!!)
and it's gone in 15 mins at night I use Tylenol PM
to sleep if I need it.

I get a bit of a rash around the shins legs and waist
It itches, I scratch it, and use Lanacaine in preference to steroidal
Cortezone.  My wife  also found me Aveeno unscented body wash/scrub
this feels good after a shower.

I choose Fridays for my shot but in may case the day of week
doesn't seem to be too significant for how I feel.

What you might want to enquire about is what day of week they will
want you to take lab tests or discuss results. Since results can take
a few days to be completed.
Ideally you want to be able to discuss these results with your TX Dr
or CNRP before you take your next shot! (in case you result levels
suggest reducing a dosage)

In my case what mostly works is, Fridays night shots,
wait about 4 days before blood lab work on Tuesday
Results then available for discussion on Friday before next shot

Get a folder to keep all your paper work and results in.

Get a few document protectors
On a single quick to find sheet write all the phone numbers of
your doctors, labs, policy numbers etc

In a short time you'll know a lot about this whole disease
(maybe even more than your Dr's)

BTW
There are a confusing amount of ways of denoting lab test results
You said your VL was 8M,

was that IU/ml? or copies/ml etc? (should be on the labtest)
(these two "scales" are very different)

Your Biopsy was fibrosis 1 and inflammation 2
did your biopsy explain the ranges?

my test was the modified "Knodel"
it is rated as

Necrosis 0-10
Parenchymal 0-4
Portal Infl. 0-4
Fibrosis 0-4
OR a possible total of 22 points

(the biopsy accuracy is also determined by the size of the specimen
25mm is optimal size)

There are also several methods and scales used to evaluate biopsies.

Did they explain anything more about what methods where used
(Get a hard copy for your records)

Sorry for the length of this post
Bottom line, Best of luck with TX
may you have the most minimal of side effects
and may you kill the bugger real good <VBG>

This is a great group of people to share your experiences, info,
pains and strengths with. You will feel at home in no time

Sorry you have to join us
but a very big Welcome aboard!!!.

And though it's hard don't worry too much
your going to find a lot of new inner strength

DB
Be Strong, Get Well, Get Better


 


Thanks Be Well, Be Strong, Get Better!

DrBenway
(not a Dr nor did I even play one on TV,)

Hey Stirred not shaken,
Welcome to the group, I guess none of us really want to be in it. That's
the fickle finger of fate. The good news is that you are now clean and
sober which may help your clear HCV a little easier.
Please read my post (Bungee Jump) I started treatment last night.
Sue

Good luck with tx Mr. Bond.  Don't obsess on the possible sides.  They
will be what they will be and can't be predicted.  Some people hardly
notice them and others go through hell.  Who knows why?  Myself?
Pretty mild.  You know, lots of people see their strength, stamina,
and focus decline without having Hepatitis C although the disease is
believed to cause these in some people.  Try not to worry about this
so much.  Take good care of yourself and see how it goes for you.