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Rusty - 29 Apr 2005 03:36 GMT

Hey everybody,

I finished my 48 weeks of treatment about a month ago. After 12 weeks I was
found to be "undetectable" so my Dr decided that I did not have to do
another viral load until after my 48 weeks of treatment. Lo and behold, "a
very low level of HCV was present" after my treatment. My gastro and I are
dumbfounded. We both thought that if I was undectable after 12 weeks surely
after 48 the little
f#%$ers would all be dead.

I did all 48 shots of the Peg-Intron on time, took my 600mgs of Riba as
instructed. (I may have missed a dose or double dosed the Riba a few times
during the treatment due to brain fog). I don't know what else I could have
done differently?

Will do another VL test in June. My LFT's have been normal since I started
the treatment, the first time in 15 years since I was first diagnosed. At
least my liver has had a break this past year anyway.

We will be doing another VL test in June to see what's going on. In the
meantime, I am struggling with Zoloft and Ambien withdrawels. I started by
cutting my doses and now I'm off them completely but I've been really
grouchy and not myself. My regular doc suggested I try Trazodone 50 mgs for
a month and see if that helps. I'm on my 2nd night of those and I would
really like to just go cold turkey on ALL the meds but I did feel good
today, not sure if it's due to the Trazodone however. Anyone familiar with
Trazodone?

I guess another question is: has anybody else had problems getting off of
these designer drugs (Zoloft/Ambien) ? I feel good a couple days a week and
then the rest of the time I am very unhappy. Not suicidal, just unhappy, not
myself.

What do you think my gastro will suggest if my next VL still finds the virus
in my body?

I've probably had HCV for 25-30 years now and my biopsies revealed "mild
fibrosis".

Any thoughts or suggestions?

Thanks in advance,

rusty

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Thomas Wagner - 29 Apr 2005 04:03 GMT

>I finished my 48 weeks of treatment about a month ago. After 12 weeks I was
>found to be "undetectable" so my Dr decided that I did not have to do
[quoted text clipped - 3 lines]
>after 48 the little
>f#%$ers would all be dead.

Sorry to hear that, it really sucks (went through that twice).

>I did all 48 shots of the Peg-Intron on time, took my 600mgs of Riba as
>instructed. (I may have missed a dose or double dosed the Riba a few times
>during the treatment due to brain fog). I don't know what else I could have
>done differently?

Probably nothing. The success rate for geno 1 is just around 50%, which
means half either don't respond or relapse, like you did. It's unlikely
that you did anything wrong.

>Will do another VL test in June. My LFT's have been normal since I started
>the treatment, the first time in 15 years since I was first diagnosed. At
>least my liver has had a break this past year anyway.

Yes, generally the liver state improves during treatment even when the
virus comes back afterwards.

>I guess another question is: has anybody else had problems getting off of
>these designer drugs (Zoloft/Ambien) ? I feel good a couple days a week and
>then the rest of the time I am very unhappy. Not suicidal, just unhappy, not
>myself.

Going off too quickly can be dangerous. You may have to gradually reduce
the other stuff.

>What do you think my gastro will suggest if my next VL still finds the virus
>in my body?
>
>I've probably had HCV for 25-30 years now and my biopsies revealed "mild
>fibrosis".

With mild fibrosis, I'd suggest "watchful waiting". Although it's
unlikely that there will be a revolutionary new treatment out any time
soon, gradual improvements to the current meds are likely to become
available quicker. Wait a few years, have your doc keep a watchful eye
on your labs, maybe do a biopsy now and then (or maybe the blood tests
will improve enough to finally be useful). And when the next improvement
to treatment is out, you can consider trying again.

Thomas

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Cactus Jammies - 29 Apr 2005 04:13 GMT

Rusty
That news is sure not what you're looking for, and probably happens as
frequently as the clear for genos 1 a and b. I know that even though I am
doing the treatment %100 on time on dose, I am half expecting to be where
you are now, when my next 18 weeks runs down.

Were you in your weight zone or were you a little over, like maybe 20%?
Just wondering, even though I did not clear at week 12, the clinic figured
that I could go to 48 without another VL test at 24, too. So, I will be
watching to see what you come up with. I take it you are geno 1a or 1b? I
weigh 225 right now. Liver biopsy results and estimated contact time w/HCV
about the same as you.

sorry to hear the news, but as you say at least the liver probably
benefitted for sure. I think you get a break for a while like a few years,
before anything with Interferon in it comes your way. Or maybe its the
RibaVirin that you can't handle two simultaneous courses after Level 2 stage
3?

Cactus Jammies
/////////////////////////////////////////////////////

> Hey everybody,
>
[quoted text clipped - 47 lines]
>
> rusty

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greyhackles - 29 Apr 2005 04:32 GMT

>Hey everybody,
>
[quoted text clipped - 4 lines]
>dumbfounded. We both thought that if I was undectable after 12 weeks surely
>after 48 the little f#%$ers would all be dead.

I don't think he did you any favors by not doing a VL test at 24 weeks.

Given what you've said, probably nothing at all.

[snipped]

>What do you think my gastro will suggest if my next VL still finds the virus
>in my body?

He may give you the choice of restarting tx now or after some down-time,
perhaps with different combo/higher dosages/longer duration; or he may
advocate "watchful waiting" in hope that a more effective tx becomes available
before you really need it.

>I've probably had HCV for 25-30 years now and my biopsies revealed "mild
>fibrosis".

You're on the lucky side of the slate, if there can be such a thing.

>Any thoughts or suggestions?

It will be interesting to see what your doctor suggests. With only mild damage
I'd be tempted to do the waiting game while keeping a close tab on labs, and
see how far that'd get me.

But, if I may ask, how much did you weigh entering therapy?
600mg Riba is pretty low unless your weight is slight...

/greyhackles

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szozu - 29 Apr 2005 12:38 GMT

> >. After 12 weeks I was
> >found to be "undetectable" so my Dr decided that I did not have to do
[quoted text clipped - 4 lines]
>
> I don't think he did you any favors by not doing a VL test at 24 weeks.

This is a typical case of "penny wise and pound foolish." Saving a bit of
money by not testing further down the road during treatment means that you
will never know if the viral load started its creep upward during tx or only
after stopping. Too bad. The only thing you can do now is wait for the next
PCR. The normalization of LFTs is great. You have given your liver a break
and there is even a chance that you have reversed some fibrosis.

You do not mention how sensitive your PCR test was. Some do not measure very
far down, so "undetectable" may mean "less than 5,000 copies." This is only
meaningful if you consistently get the same results twelve weeks and one
year after stopping tx. In my case the test only measured greater than 5,000
copies, but I finished tx in July of 2003 and have received the same results
starting from the 10th week of tx. I'm just about to do another one which
will be important in determining if I can safely rest on my laurels.

You didn't do anything wrong, but your doctor deserves a lashing with a wet
noodle.

Lana

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A.Melon - 30 Apr 2005 12:50 GMT

> You didn't do anything wrong, but your doctor deserves a lashing with a wet
> noodle.
>
> Lana

Hey Ms *neat* and *tidy* just to let you know that I don't have any ill
feelings towards you, but you ain't ever going to tell me what to do, here is
something that I know that you will find very interesting.

http://www.dragonscience.com/index.html

But hey, who am I to tell you to click on it, but then again you probably
already found it.

Firebird

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pajaritaflora - 29 Apr 2005 04:56 GMT

> Hey everybody,
>
[quoted text clipped - 40 lines]
>
> rusty

Hmmm Bummer man
I got undetectable status at week 12 test....I'm at week 19 now (I
think), thought maybe I was a shoe-in for success......I better not
count those chickens early..
Your ribavarin sounds low to me. I am of slight weight at 110 and am
taking 1000mg daily.
I'll be thinking of you,
Mary Ann

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Paul - 29 Apr 2005 08:25 GMT

On Fri, 29 Apr 2005 02:36:42 GMT, "Rusty" <rustylarue888@hotmail.com>,

I'm sorry to hear that Rusty. I guess you must be gutted. I know that
I would have been. Sometimes the virus returns after tx ends. It's a
bummer but thats the way it is.

You did nothing wrong IMO. 600mg twice a day is normal dose. It's
unlikely that the occasional missed dose or double dose would affect
the outcome.
I guess that you now play the waiting game with periodic biopsies
every few yew years. Some places let non-responders make another
attempt using infergen early on but I hear that's a real arse kicker.
Some places do a 72 week tx for people who relapse. I realise that
neither of those options are attractive.

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Paul

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elmoemerson@webtv.net - 29 Apr 2005 13:46 GMT

Sorry to hear that, Rusty. It sounded pretty unusual to hear that until
you said you were only doing 600mg riba/day. Did you start out taking
only 3 a day? How much do you weigh? It just doesn't seem like a large
enough dose, to me, and I'm thinking that's a rational explanation for
why you relapsed. What to do next?
Take some time off of tx and relax.
Elmo

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

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

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Rusty - 29 Apr 2005 16:43 GMT

Hey all,

Thanks for the input.

FYI:
I am a genotype 1A.

Started the treatment weighing about 175 pounds. Lost over 20 pounds the
first few months but eventually went back to my normal weight.

I took 600mgs of Riba 2X per day.

I will keep you all informed as to the results of my tests in June.

Thanks again,

rusty

> Hey everybody,
>
[quoted text clipped - 40 lines]
>
> rusty

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Russ - 29 Apr 2005 17:10 GMT

Hi Rusty-

I did the 48 weeks of Pegasys/riba and ended up relapsing. sucks sh.t man.

Anyway on the Zoloft and Ambien. I took Ambien for most of the treatment,
but it wasn't very effective and in the end I quit using it. It just didn't
work. I ended up in the last couple of months using Xanax for sleep and it
worked well for that. Right after stopping the chemo I had a bitch of a time
sleeping for about a month as I had for most of the last 3 months of
treatment. I suspected Zoloft, but it could have been the sudden stopping
use of hydrocodone which I used for most of my treatment. I didn't have any
cravings and felt pretty good after finishing the treatment but just
couldn't sleep.

I took 100 mg/day of Zoloft all though the treatment. Right after finishing
treatment I cut my dose of Zoloft in half to 50 mg/day for about 2-3 weeks.
I felt fine and sleeping was getting easier. Then I split two 100 mg tabs in
"1/4's" (tricky to do), and took 25mg for a week then quit. After I got off
the Zoloft I started to sleep normally again. This was all in about a 5 week
time span from finishing the ribaviran to felling pretty damn good.

It was about 3 months later I could "feel" something was off. I had the flu
like feeling and was pretty tired. My 6 month post tx PCR was 3 million.

I had Trazadone before and didn't like the "hangover" affect though it did
make me sleepy. Xanax is much shorter acting and for me it worked well for
sleep. I was never real impressed with Ambien, which is supposed to be
"non-addictive". I never felt sleepy with those, but Xanax, after 30 minutes
of taking a dose I would let out a big yawn and head to bed.

Good luck.

Signature

Russ

Visit Alaska @ http://www.tannersacre.com

> Hey everybody,
>
[quoted text clipped - 40 lines]
>
> rusty

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Bri Kid - 29 Apr 2005 20:49 GMT

I was on Zoloft for a year or so,but the sexual side effects made me
stop. I lost interest and didn't even crack a smile or sneak a peek at
girls struttin down the beach wearing a bandaid. I switched to Lexapro
and I was back to normal. Then my insurance would only cover prozak and
the same sides came back. I don't take any anti d's anymore.
Trazadone on the other hand is a lifesavor for me. I"m a 2hour sleep a
night guy without them. None of the docs I had/have will prescribe
Ambien for me. I take 100 mls of traz some nights, 200 other nights. The
grogs in the morning combined with brain fog make me irritable. I don't
want to say much about tx cause I only did 3 months, but I know plenty
of people who show no viral load after tx and still feel bad. I think
the little beasties just find a place to hide from the poison----and
then rear their ugly heads when tx stops. Keep on fighting back hard
like you've been doing. Best of luck Russ. Brian

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Susie Quill - 30 Apr 2005 23:43 GMT

It doesn't sound like you did anything wrong. 600 mg. 2 times per day
should have done it, I would think. I hurt for you. That's the pits. At
least your liver has had a rest and is probably in better shape now then
when you started.
Susie

> Hey everybody,
>
[quoted text clipped - 47 lines]
>
> rusty

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