Interferon put the body's immune system into an over-drive state, and the
resulting effects are often non-trivial. It is common for the first few weeks
of interferon shots to have a powerful, debilitating effect. I know my a.s got
thoroughly kicked on the first shot - it felt like the worst case of flu I'd
ever had. Nite sweats soaked the sheets and pillow case, shakes and shivers
that were uncontrollable, temperature felt like it was on a roller coaster,
alternating between feeling chilled to the bone and hotter than heck.

The second week was less intense, but not by much. I remember thinking "Holy
crap! What the heck did I sign up for??" But each successive week got a little
better, and by about the 6th week, I just felt a little crappy over the
weekend. And then the anemia set in.

Doing my shot on Friday evening, just before bed, allowed me the whole weekend
to recover in time for work on Monday morning. I can't imagine doing it any
other way, but then again, some people don't get so wasted from the interferon
and probably could do the shot any day of the week and still make it to work.

Your sister should be getting blood tests done soon - like at the end of the
second week - to see if there are any counts that are falling precipitously.
You should verify this - and if she hasn't been scheduled for these tests,
make sure she contacts the treating physician and get them done. While it's a
bit early for significant anemia to have settled in, if her Hemoglobin count
is falling steeply, anemia could be just a couple/few weeks away.

Otherwise, let her know that the first weeks are almost always the worst with
respect to feeling like total crap. Her body has been producing up to a
trillion copies of the HCV virus every day for as long as she's been infected,
and now that her body is fully engaged in actually killing the little bastids
off, the exhaustion is not surprising. She just has to get through this period
and settle into the long-haul routine.

It may sound trite, but nothing worth having comes easy.
And getting rid of the virus is totally worth the battle...

Cheers

/greyhackles (virus-free going on four years)

No, it gets worse. And worse. Then you add in the rescue drugs--EPO,
happy pills, benzos, opiates, etc. and then it gets somewhat better
again, or stabilizes at some barely endurable version of hellish
dystopia.

That's my experience after a day short of 56 weeks. In my case,
methadone and EPO have helped a LOT, and many others love SSRIs and/or
pot. But without the intervention of those drugs the natural order of
things would be pain and more pain.

For me. Only speaking for me.

It is doable, mind you. Loved ones help more than any drug, of course.

PS: It ends eventually, or so I am told. Then it gets better. They
claim;)

Yes, of course it gets easier, but you don't realize it at the time.

How to cope. Hmmm, that's a toughie because the side-effects are different
for everyone. Some people (and I hate them all) breeze through the whole
thing, not missing a day's work or a night's sleep or a meal or a moment of
sanity. Others, like me, go through periods of being unable to get out of
bed, never mind going to work. I did my shot Friday night and sometimes I
felt okay to work Monday, but sometimes I wasn't terribly functional until
Wednesday. My first shot was the worst, the second almost the worst, and
then it started to get easier as my body got used to the routine and seemed
to adjust to it. There was not one day of my treatment that was "easy" and
you'd be fooling yourself to expect one. After the first shot, I thought
there was no way I could bear to do the second, and certainly I would never
make it to the end. But, on the second Friday night I told myself, "Just one
more, then if I can't handle it, I'll pack it in." So I did the second shot.
Then the third, then I was half-way through six months, then it was over.
But every shot was a deal with myself-- just this one, then I'll quit if I
can't handle it. For me, it worked. Every Friday I conned myself into doing
just one more shot.

A month before I was due to finish, my blood counts were so low that I could
barely walk across the room and the doc told me to just do the interferon
injection, to discontinue the Ribavirin because it was making me dangerously
anemic. Whoopee, a doctor's permission to cut back on the evil drugs that
made me feel so awful :-)  So I agreed that I would stop taking the Riba.
But, I didn't. Having come that far and being so close to the end, I didn't
want to risk missing the brass ring. No, I didn't die. Yes, I got my SVR.
For the two years it took for the "cured" verdict, there was no doubt in my
mind that I'd go through the whole ordeal again if I had to.

All I can say to your sis is to take it one day at a time, one shot at a
time, one pill at a time. Make a calendar for the duration of tx, and every
shot-night, draw an x through the day; that visual reminder of steady
progress was helpful to me, and I didn't want to leave any empty boxes on
the calendar. A silly game? Yes. But we do what we can to get through it.

Tips on how to cope is easier. Drink water and lots of it; it reduces the
dehydration caused by the meds, and thus the rather horrible symptoms of
dehydration. Get lots of sleep, take naps in the afternoon, go to bed right
after dinner, whatever; give your body all the help you can to wage war
against the hep c virus. Eat a small meal or snack every few hours, avoid
greasy food and if nausea is a problem it's okay to smoke your brains out
(pot; not cigarettes) because good nutrition is important. Fresh veggies and
fruits, avoid red meat cuz it's hard to digest, and keep drinking lots of
water.

If your sister is not on antidepressants, she should be. If she is, perhaps
she should discuss with her doctor an increased dose or a different type.
Depression (and sometimes suicide ideation) is a very real and serious
side-effect of tx and should not be dismissed, trivialized or internalized.

The drugs make you crazy, too, in that normal activities are difficult and
unfullfilling. I played with Photoshop when I was on tx, I played sim games
on my laptop, I watched movies on tv and I read science fiction. I listened
to music constantly, it relieved the constant pain in my head, and the most
therapeutic was 60s-70s rock, Pink Floyd to Led Zeppelin and lots of
traditional blues. I could finish a book, pick it up the next day and not
remember a word that I'd read. Oddly, I learned Photoshop inside-out, and
that would have taken me several years in normal circumstances.

If your sis has someone like a caring brother who can do all her cooking,
cleaning, shopping and other errands, that helps too. If you're in or near a
city, she could look for a hep c support group and likely find people who
have either been through tx or who are currently going through it. Really,
there is no one in the world, no matter how sympathetic or how educated, who
has any f.cking clue what tx is all about, unless they've been through it.
It helps a lot to talk to someone who's either been there done that or who
is doing it now. I was tremendously lucky that I did tx the same time as two
old-timers on this board, Elmo and Geb Bixer. We chatted here, we e-mailed,
we telephoned and we even had a couple of three-way conference calls. They
were the only ones who understood, and tx was less lonely for me because of
them.

My advice to your sister is... do just one more shot.

On Wed, 22 Oct 2008 17:47:38 -0400, Michael A. Ball
<Guardian@wireco.net>, in message ID
<bh3vf4tgi626pssn7b7ulnvadlv6k9dg3v@4ax.com>, in the newsgroup
alt.support.hepatitis-c wrote:

Treatment is different for everyone.  However, I struggled a bit for
maybe 3 weeks.  I also started struggling again after several months.
In between I had some respite though.  I'm not saying it was good -
just not anywhere near as bad as I expected.  If she sticks with it
another couple of weeks, maybe she will get respite as her body starts
to adapt.  No guarantees though.  Wish I could make definite promises
but I would be a liar.  For most people, tx is pretty unpleasant but
definitely doable.

Michael, welcome, and sorry to hear about your sister.  It was pretty
much the same way with me.  The first few weeks the shot wore me out.
I take it on Friday but it doesn't usually kick in until Sunday.  My
symptoms were just horrible fatigue and headache at first.  Then it
got worse.  In the second month, the body aches took over, with
increased dizziness, nausea.  I started taking off at least 2 days a
week and sleeping all day, and napping in between on the other days if
I could.  I started taking pain pills and had trouble with the side
effects from them too.  but I finally found a dose I could tolerate.
I am on Norco, 1 tab about every 4 hours during the day.  I usually
only take about 3 of them in one day, but sometimes 4.  It really
helps me get thru the day and keeps the pain to a minumum, but it's
still not easy. Anyway, around the 4th month of tx I got into the
swing of it.   I am now into the 7th month of tx and I have sort of
gotten used to it, but I do suffer from moodiness, sometimes really
depressed, but I am getting thru it.   WATER is her biggest ally.  She
needs probably around 80 ounces a day, more or less depening on her
weight.  It cuts the fatigue way down and all the other symptoms.
Tell her to write us here, it will help her and us.  Hang in there,
TC

I am so sorry all of this is happening.  I used to have a friend going
through the second round of treatments with the new therapy.  He said
he had tried years ago but a family member took him off because of his
reactions.  This time around I guess I was too insistent on his giving
me updates to his condition instead of no conversation at all.  Wish I
had found this group to begin with to understand how hard this is for
all of you.  Maybe we could have remained friends.  I've heard he is
cured but the process was have been so awful.  Now I wonder if he
dislikes me so much as I was part of the reason he tried again.  No -
I am not taking credit for any of his decisions.  I just wanted to see
his life extended for his granddaughters.  His constant talk of
mortality was so hard for me to take.  I wish him well and everyone on
this treatment.  I'll continue to read and my heart is with each and
everyone of you.  My difficulties are of an emotional state...

Hugs, love and support.