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Medical Forum / Diseases and Disorders / Hepatitis / August 2006

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Side effects of TX and lasting side effects

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Barbara - 17 Aug 2006 08:25 GMT
Hi all,
Someone on another board posted all the side effects from the drugs given
for tx and at the bottom it said some side effects could lead to death, some
were irreversible, some would go away after 8 weeks. The side effects listed
were horrific. It really freaks me out. I'd like to know how those who took
tx felt when seeing that long list of side effects.
I haven't had my biopsy yet but should I require tx soon, I am scared to
death of those drugs, just from reading that list.
How did you reconcile this with yourselves?
I've also heard people mention their lasting side effects like cataracts,
arthritis, loss of concentration, and other things, that also freaks me out.
Thanks for any responses.
Barbara

--
bob - 17 Aug 2006 10:09 GMT
>Hi all,
>Someone on another board posted all the side effects from the drugs given
[quoted text clipped - 9 lines]
>Thanks for any responses.
>Barbara

Wow. Now I'm freaked out. I start tx tomorrow.

All drugs have a list of horrible side effects. Usually they don't
occur. Not all of them anyway (I hope)..
mags - 17 Aug 2006 13:56 GMT
Good luck with your treatment Bob.  How long are you treating for?  It
seems men do a little better as their muscle mass doesn't disappear as
fast as a woman.

Mags

> >Hi all,
> >Someone on another board posted all the side effects from the drugs given
[quoted text clipped - 14 lines]
> All drugs have a list of horrible side effects. Usually they don't
> occur. Not all of them anyway (I hope)..
bob - 17 Aug 2006 15:15 GMT
>Good luck with your treatment Bob.  How long are you treating for?  It
>seems men do a little better as their muscle mass doesn't disappear as
>fast as a woman.

Hi Mags

I have type 1a. It's 48 weeks for me.

Geesh, my muscle mass is going to disappear too?  From what I've read
here it sounds as if I'm  going to end  up skinny, blind, bald, angry,
forgetful and  depressed.  Hopefully virus free.

>Mags
>>
[quoted text clipped - 16 lines]
>> All drugs have a list of horrible side effects. Usually they don't
>> occur. Not all of them anyway (I hope)..
Sara - 17 Aug 2006 15:37 GMT
giggling here...

beats the alternative tho, eh Bob?  :))

sadly, I am beginning to realize I won't see the 'skinny' part of
that list.

SIGH

Sara

>>Good luck with your treatment Bob.  How long are you treating
>>for?  It
[quoted text clipped - 43 lines]
>>> don't
>>> occur. Not all of them anyway (I hope)..
mags - 17 Aug 2006 16:05 GMT
You catch on fast  Bob!  Now don't forget the nasty diarrhea as we
become prone to accidents.  Surprised Russ hasn't warned you lol.

Mags
good luck Bob

> >Good luck with your treatment Bob.  How long are you treating for?  It
> >seems men do a little better as their muscle mass doesn't disappear as
[quoted text clipped - 28 lines]
> >> All drugs have a list of horrible side effects. Usually they don't
> >> occur. Not all of them anyway (I hope)..
Ernie & Eythl - 18 Aug 2006 01:34 GMT
bob said:

>> Good luck with your treatment Bob.  How long are you treating for?  It
>> seems men do a little better as their muscle mass doesn't disappear as
[quoted text clipped - 7 lines]
> here it sounds as if I'm  going to end  up skinny, blind, bald, angry,
> forgetful and  depressed.  Hopefully virus free.

Just wait until yer dink falls off in the middle of treatment. BOY, is
THAT ever fun.

Ernie
<The man on the hill with a mountainous load in his shorts>
bob - 18 Aug 2006 02:36 GMT
>bob said:
>>
[quoted text clipped - 12 lines]
>Just wait until yer dink falls off in the middle of treatment. BOY, is
>THAT ever fun.

That's okay, I'm not using it anyway.......

>Ernie
><The man on the hill with a mountainous load in his shorts>
Sara - 17 Aug 2006 15:35 GMT
No freaking out allowed :)  You CAN do this, Bob :)

Welcome to the world of Dragon Killing :)

Sara

> On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara"
> <barbarac102@yahoo.com>
[quoted text clipped - 26 lines]
> don't
> occur. Not all of them anyway (I hope)..
Barbara - 17 Aug 2006 17:35 GMT
Hi Bob,
Sorry, I didn't mean to freak you out. I wish you well in your tx. Let us
know how it goes.

My best wishes,
Barbara

> >Hi all,
> >Someone on another board posted all the side effects from the drugs given
[quoted text clipped - 14 lines]
> All drugs have a list of horrible side effects. Usually they don't
> occur. Not all of them anyway (I hope)..
mags - 17 Aug 2006 13:54 GMT
Hi Barbara.  I think I was in the top 10 for side effects.  I finish my
48th week of TX on Tuesday.  When I first found out I had Hep C - I
panicked.  I live in Canada and the blood system was tainted and many
people died from Hep C.  I would rather have some life than none - that
is how I reconciled it.  If your geno 2 and 3 you probably will get off
lucky - its the long haulers that truly suffer when they are prone to
side effects.  Will let you know after treatment if there is any
lasting effects.

Mags
the only choice I had was life

> Hi all,
> Someone on another board posted all the side effects from the drugs given
[quoted text clipped - 11 lines]
>
> --
Sara - 17 Aug 2006 15:39 GMT
Mags is our hero, Barb :)  She's truly been to hell over the past
12 months, and is just starting to find her way back out now....
But she stuck it!  She is one awesome cookie :)

Sara

> Hi Barbara.  I think I was in the top 10 for side effects.  I
> finish my
[quoted text clipped - 37 lines]
>>
>> --
mags - 17 Aug 2006 16:04 GMT
Oh Sara - gotta love you.  Thanks for your kind words.  I will be here
for you all the way girl.

Mags

> Mags is our hero, Barb :)  She's truly been to hell over the past
> 12 months, and is just starting to find her way back out now....
[quoted text clipped - 43 lines]
> >>
> >> --
Barbara - 17 Aug 2006 17:23 GMT
Mags,
I understand and I wish you well and good health and no lasting side
effects. Thanks for your response.

Best wishes,
Barbara

> Hi Barbara.  I think I was in the top 10 for side effects.  I finish my
> 48th week of TX on Tuesday.  When I first found out I had Hep C - I
[quoted text clipped - 23 lines]
> >
> > --

.
Sara - 17 Aug 2006 15:34 GMT
well Barb, the bottom line for me was that I already had liver
damage, and if I just kept on going as I had been for the last 30
years, I'd be needing a liver transplant sooner or later, or I'd
die from cirrosis....  I didn't like either of those
alternatives!

I also was so fed up with being tired all the time, I figured it
would be worth it just to feel like a human being with some
energy again!

Every medicine we put in our body has side effects.  The Hep-C tx
can have some pretty brutal consequences,but so can most any
other drug we take for our health problems.  MOST people do not
get the really bad/fatal sides tho.  and MOST of the Hep-C
doctors/nurses I've heard about keep a really good watch on us
and if things get too rough/dangerous they will pull us off the
tx.

I've read some stories of living with liver cirrosis.  I can only
hope I never have to go there -- thankfully, if this tx doesn't
take care of the virus, there are many new treatments on the
horizon that I'll be standing in line for to try to beat the
dragon.

But so far, I'm responding well to the drugs, the virus is
undetectable in my body, and my liver enzymes are back to normal.
That's after almost 19 weeks of tx.... still 29 more to go!  I am
determined that these drugs WILL take care of the problem, and I
will get my SVR when all is said and done :))

you know, you can obsess and worry and make yourself even sicker
with anticipation, or you can choose to trust your doctors and
make a decision to kick dragon a.s.  Attitude is so important in
these battles.. you just gotta believe :)   My mantra for this
treatment is:
"I think I can..... I think I can.... I THOUGHT I COULD!"

In the immortal words of my then- 4 yr old daughter when I was
trying to decide which card to play in a bridge game:

"Just DO it, Mom!"

Love to you, hope you find some answers soon that will give you
peace.  I do have some books here I'd be willing to send you if
you are interested.... if so, just email me at:

puffler at wowway dot com

with your address and I'll get them in the mail to you very soon!

take care
Sara

> Hi all,
> Someone on another board posted all the side effects from the
[quoted text clipped - 18 lines]
>
> --
mags - 17 Aug 2006 16:01 GMT
Right on Durango!  Well said.

Mags
changing my mind about the riba

> well Barb, the bottom line for me was that I already had liver
> damage, and if I just kept on going as I had been for the last 30
[quoted text clipped - 71 lines]
> >
> > --
Barbara - 17 Aug 2006 17:33 GMT
Hi Sara,
Thanks for your reply.
I do understand if you have liver damage and high enzymes and feel sick and
tired all the time that you would feel quicker to treat.
I wish you well and that you clear the virus.
For me, I'm struggling with anticipation and haven't even had the biopsy
yet.
My enzymes have been normal for the 10 years I've been testing and I don't
have symptoms. I just went for an ultrasound and will schedule for a biopsy
and will see from there.
Thanks for your post and wish you the very best.

Barbara

> well Barb, the bottom line for me was that I already had liver
> damage, and if I just kept on going as I had been for the last 30
[quoted text clipped - 71 lines]
> >
> > --
mags - 17 Aug 2006 18:26 GMT
MY BCLD told me that normally they wouldn't treat people who where not
at stage 3 or 4 but literature is showing the earlier you treat the
better chances of survival or slaying the dragon will be.  Also the
younger you are the better your chances.

Mags
Geno 1b
damage mild 1

> Hi Sara,
> Thanks for your reply.
[quoted text clipped - 85 lines]
> > >
> > > --
Barbara - 17 Aug 2006 19:27 GMT
Isn't stage 4 cirroshis?
I would think they would agree to treat anyone who was willing and had the
disease.

Barbara

> MY BCLD told me that normally they wouldn't treat people who where not
> at stage 3 or 4 but literature is showing the earlier you treat the
[quoted text clipped - 94 lines]
> > > >
> > > > --
Paul - 18 Aug 2006 09:17 GMT
On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>,

>Hi all,
>Someone on another board posted all the side effects from the drugs given
[quoted text clipped - 9 lines]
>Thanks for any responses.
>Barbara

I didn't need to look.  I witnessed someone die on tx a few weeks
before I was diagnosed.  It was probably as a result of auto-immune
hepatitis caused by the treatment.
Don't let that put you off though.  The cause was unproven and a
pretty rare thing to happen.  
I reconciled it by weighing up how I felt about being the carrier of a
potentially infectious disease as against a good chance of clearing
it.  Also, I figured that such a rare thing was unlikely to happen to
much by definition.
The possible (and I must stress "possible") side effects are in the
public domain but it is very unlikely that someone will get all of
them or even most of them.

Have a look at  http://www.pegassist.com/pub/utilities/safety.asp and
read the warning there.

I'm not trying to put anyone off from treating but I do feel that
potential treaters should be fully informed.
Abby - 18 Aug 2006 15:51 GMT
> On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>,
>
[quoted text clipped - 30 lines]
> I'm not trying to put anyone off from treating but I do feel that
> potential treaters should be fully informed.

This is for anyone diagnosed with Hep C who is offered treatment.  I'm
Geno 3 and to make a real long story short because I have good news for
you - here goes.  Today I'll do my 9th injection and then I'll only
have 15 more to go to complete the 24 weeks of tx.  As far as side
effects go, I have had a few bouts with diarhea, mild to severe
anxiety, a few crazy dreams and sleepless nights, a wierd little rash
on the top of both my feet, lost about 10 pounds at first and have
gained back 5. I have had some episodes of lower leg and foot
circulation and I still don't know what that's about and if it
continues or becomes worse I'll tell a doctor.  In the very beginning
of treatment my periods started back and I had terrible PMS. That
happened to me on weeks 3 and 4 and now its back to what it was -
nothing.   (I'd been free from that for about a year)    This week I
began to notice the fatigue people speak of on tx and you'll know it if
it hits you its like no other tiredness I've ever had.  It is this -
walking up four flights of steps and you are only half way there and
you don't know if you have the energy to get to the top and you don't
want to give in and go back down and wait for the elevator.  I couldn't
figure out why my Dr. told me he would prefer it if I took it easy on
weight training and kickboxing and now I now why.  I'd probably injure
myself from trying to do what I used to do.  So, I'll be lazy and wait
for this to be over - I've missed out on workouts for long periods of
time before -usually due to feeling lousy from symptoms of Hep C!  Hmmm
what else - yesterday I noticed I was peeling around my ankles.  That's
from a little bit of sun I got while on vacation and yes - I did go on
vacation with the meds and had a great time - felt wonderful. And, last
night I was up at 3:00 a.m. with a head ache.  I took two aspirin with
oj and went back to bed.  (Dhaaa!)  Probably, the worst part of all of
this has been my Dr.  He's an a.s and I will probably ask my family
physician who I really like to monitor me from here on out if there are
no serious problems.  He wanted me to see a specialist, I did see the
guy a few times, he's an a.s and I don't wanna see him anymore.  I
wonder if the anxiety comes from this Dr.  Anyway - enough of that
don't want to waste time whining although people that know me would get
a good laugh from that last statement!  The way I look at this thing
now is I wish I'd never researched Hep C after I was dxed.  I panicked
from what I read online.  I went into denial and caused myself more
liver damage.  I am between a stage 2 and stage 3 of fibrosis.  I think
we need to look at it this way - you have a life threatening disease
but there is a treatment.  Percentage wise - we have a great
opportunity to be rid of this disease and reverse some to all damage
done.  Why hesitate?  Go for it!  If it becomes too terrible we can
chose to quit.  But I don't know of anyone who would chose to die from
liver disease.  Its the worst.  Good luck to you and everyone here
going through this.  Peace & Love - Abby
Barbara - 18 Aug 2006 17:21 GMT
Thanks Abby for your response.
I'll know for sure after my biopsy, at least I hope I'll know what to do...I
think it should be clear to me by then.
Best wishes to you,
Barbara

> > On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>,
> >
[quoted text clipped - 76 lines]
> liver disease.  Its the worst.  Good luck to you and everyone here
> going through this.  Peace & Love - Abby
Burke Gilman - 18 Aug 2006 18:55 GMT
> > On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>,
> >
[quoted text clipped - 76 lines]
> liver disease.  Its the worst.  Good luck to you and everyone here
> going through this.  Peace & Love - Abby

Patient presented to clinic with chronic hepatitis C infection.
Counseled on treatment options. Pt refuses treatment. Endorses history
alcoholism, IDU, codependency. States she just wants to help.
Barbara - 18 Aug 2006 17:24 GMT
Yeah, I read the posible side effects and that's what freaked me out. I
don't like hearing death as a side effect and irreversible side effects.
Anyone you get my drift.
I wish you the very best.
Thanks,
Barbara

> On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>,
>
[quoted text clipped - 30 lines]
> I'm not trying to put anyone off from treating but I do feel that
> potential treaters should be fully informed.
kjoh - 18 Aug 2006 19:41 GMT
Hi Barbara.  I have been thinking about your question for two days.  I
ended my year of treatment six months ago.  I  relapsed at three months.
I believe I am still having memory and concentration problems caused by
tx, but they have improved markedly since I stopped..  In the weeks before
tx I spent long hours researching the disease and I read many
medical/technical articles. I remembered what I  read and was able to
synthesize the info and talk with my docs about it.  By 12 weeks into
treatment I lost the ability to understand and remember what I was
reading.  Three months post-tx I still had problems and was convinced that
I would have permanent comprehension and memory problems, but I find myself
gradually prowling the med lit again, and yesterday I was back at it for
several hours.  So whaddya know!  Still improving! The brain can rewire
itself.   I became measurably malnourished during tx, so of course that
didn't help.  

My thyroid was managably underactive (hypothyroid) for years before tx and
it wanked around pretty badly from the combo chemicals.  For the most part,
it has returned to its usual pre tx behavior, and my med doses for that are
similar now, so I don't think there was any permanent damage to my thyroid.

My anxiety and depression and semi-paranoia on tx were brutal.  Those
problems improved right away after stopping tx.  Whew.  I would have had a
tough time without this group.  No amount of technical information is as
helpful as a bunch of weird, funny, intelligent people saying "been there
done that."  I am still badly fatigued, but I have other health issues
that may or may not be hcv-related ( I am 50, and reasonably fit).

In my opinion and experience, the "lasting effects" of hcv will be worse
than the lasting effects of tx.  If you opt for tx, pay close attention to
your side effects and make sure your doc also pays close attention.  Talk
with him/her AT LENGTH about drugs that might help you, should you need
them - for dropping red or white blood cell counts, depression, anxiety,
insomnia, pain, rashes.  The rescue drugs matter and you don't want to
have to reason with your doc about them after you are on tx.

Hope this helps
Kathy

c'mon the rest of you clowns, fess up about your tx hangovers:-)
Barbara - 18 Aug 2006 21:00 GMT
Thank you Kathy, it does help. Nothing beats hearing from someone who has
been through it. And I'm very glad to hear that you are improving. Hope you
continue to improve.
Thanks so much for taking the time to think about my question and answering
it.
Barbara

> Hi Barbara.  I have been thinking about your question for two days.  I
> ended my year of treatment six months ago.  I  relapsed at three months.
[quoted text clipped - 35 lines]
>
> c'mon the rest of you clowns, fess up about your tx hangovers:-)
Burke Gilman - 18 Aug 2006 21:11 GMT
>snip<
>
> c'mon the rest of you clowns, fess up about your tx hangovers:-)

Get out. I will not be having any Tx hangovers. In a few weeks, I'm
just going to blow this nightmare like a bad dream. -bg
greyhackles - 18 Aug 2006 21:41 GMT
>>snip<
>>
>> c'mon the rest of you clowns, fess up about your tx hangovers:-)
>
>Get out. I will not be having any Tx hangovers. In a few weeks, I'm
>just going to blow this nightmare like a bad dream. -bg

Short termers are like that ;-)

My progress since EOTx has been almost entirely without drama. My biggest
on-therapy problem was severe anemia, but by the 3rd week I was off the
Procrit for good and all my blood numbers were well on their way to their
pre-tx state - save for the LFTs, which are now those of non-heppers :-)

My muscle tone was compromised in a major way by the end of the 48 week tour -
most of the 40+ pounds I lost was clearly muscle tissue - but this has been
coming back slowly but surely.

Like CJ, my fine motor skills were impacted during therapy, which really
became apparent this spring when I started tying flyfishing "flies" again. I
don't know if that was neurological or physiological - I suspect the latter -
but that's clearing up as well.

The hair thing has gone full circle - I'm back to a full head of very curly
hair again, after having it go dead straight and fragile as heck by the 6th
month of tx. My post-tx eye exam went perfectly, so no impact there. And I had
no mentionable on-therapy emotional or other psych issues, so no anti-D
withdrawal problems.

The only apparent, lasting damage is the scar from shot #41 that left me with
an injection site reaction, and scar tissue in the tight "corners" of all my
finger joints. Between the Riba and the dead of a brutal New England winter,
I had a major problem with skin dryness on my hands, in spite of a medicine
chest of countermeasures. It hasn't taken much provocation to get the scars to
crack open, but I *think* this is slowly getting better, I just can't swear to
it yet.

All that said, I cannot answer the un-asked question...

Cheers

/greyhackles
Barbara - 18 Aug 2006 23:15 GMT
Greyhackles,
From reading your post, you've done well, and it appears you are continuing
to improve.
Thanks for your response and best wishes,
Barbara

> >>snip<
> >>
[quoted text clipped - 38 lines]
>
> /greyhackles
elmoemerson@webtv.net - 19 Aug 2006 15:45 GMT
Re: Side effects of TX and lasting side effects  

Group: alt.support.hepatitis-c Date: Fri, Aug 18, 2006, 4:41pm (CDT+1)
From: greyhackles@NOSPAMyahoo.com (greyhackles)
On 18 Aug 2006 13:11:12 -0700, "Burke Gilman" <burkegilman@moxmail.net>
wrote:
kjoh wrote:
snip<
c'mon the rest of you clowns, fess up about your tx hangovers:-)
Get out. I will not be having any Tx hangovers. In a few weeks, I'm just
going to blow this nightmare like a bad dream. -bg
Short termers are like that ;-)
My progress since EOTx has been almost entirely without drama. My
biggest on-therapy problem was severe anemia, but by the 3rd week I was
off the Procrit for good and all my blood numbers were well on their way
to their pre-tx state - save for the LFTs, which are now those of
non-heppers :-)
My muscle tone was compromised in a major way by the end of the 48 week
tour - most of the 40+ pounds I lost was clearly muscle tissue - but
this has been coming back slowly but surely.
Like CJ, my fine motor skills were impacted during therapy, which really
became apparent this spring when I started tying flyfishing "flies"
again. I don't know if that was neurological or physiological - I
suspect the latter - but that's clearing up as well.
The hair thing has gone full circle - I'm back to a full head of very
curly hair again, after having it go dead straight and fragile as heck
by the 6th month of tx. My post-tx eye exam went perfectly, so no impact
there. And I had no mentionable on-therapy emotional or other psych
issues, so no anti-D withdrawal problems.
The only apparent, lasting damage is the scar from shot #41 that left me
with an injection site reaction, and scar tissue in the tight "corners"
of all my finger joints. Between the Riba and the dead of a brutal New
England winter, I had a major problem with skin dryness on my hands, in
spite of a medicine chest of countermeasures. It hasn't taken much
provocation to get the scars to crack open, but I *think* this is slowly
getting better, I just can't swear to it yet.
All that said, I cannot answer the un-asked question...
Cheers
/greyhackles  
/////////////
The only lasting side effect I've experienced is the compulsion to
expose myself to big titted women in public places.  Butt, with the
hellp of local law enforcement officials, I'm beginning to get it under
control.  :-)
elmo
"I declare insanity, your Honor.  I'm just crazy about that stuff!!"

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 19 Aug 2006 15:39 GMT
Re: Side effects of TX and lasting side effects  

Group: alt.support.hepatitis-c Date: Fri, Aug 18, 2006, 1:11pm (CDT-2)
From: burkegilman@moxmail.net (Burke Gilman)
kjoh wrote:
snip<
c'mon the rest of you clowns, fess up about your tx hangovers:-)
Get out. I will not be having any Tx hangovers. In a few weeks, I'm just
going to blow this nightmare like a bad dream. -bg
///////
Atta boy, Burke!
elmo

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
Sourdo - 19 Aug 2006 05:29 GMT
Well it's like this. Not all have problems, most do. Now for me, I just got
to feeling like it was all one constant tequlia hangover 24/7. I knew it
wasn't going to be fun, and it wasn't.

But it was battle and battle it was. I just slugged it through. Though it's
unpleasant, I got by and day by day till it was done. You can do it too.
Talk to your doctor about meds for side affects. Nausea, painfull headaches,
sleep problems, whatever.

Good luck there. I know you can do it, a lot of people allready have.

Signature

Russ

http://www.tannersacre.com
sourdo55 at yahoo.com

> Hi all,
> Someone on another board posted all the side effects from the drugs given
[quoted text clipped - 11 lines]
>
> --
Barbara - 19 Aug 2006 17:44 GMT
Thanks Russ.

> Well it's like this. Not all have problems, most do. Now for me, I just got
> to feeling like it was all one constant tequlia hangover 24/7. I knew it
[quoted text clipped - 31 lines]
> >
> > --
 
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