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Medical Forum / Diseases and Disorders / Hepatitis / May 2008

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Varying Stats Lead to Confusion...

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amzolt - 27 May 2008 14:59 GMT
Just talked to my Clinic contact about folks in the UK getting Viral
load tests for 5 years post-Tx. She said it's "unnecessary".

She also said most of her patients are clear of side-effects at around
one month post-Tx.........

I don't doubt her word but everything else I've read says two to
six....

Also, she deals predominantly with older folk...................

~ Alex
greyhackles - 27 May 2008 15:37 GMT
>Just talked to my Clinic contact about folks in the UK getting Viral
>load tests for 5 years post-Tx. She said it's "unnecessary".
[quoted text clipped - 8 lines]
>
>~ Alex

It certainly makes one wonder if her opinion about follow-up testing is shaped
by the mechanics of health care provided in the UK.

As for the duration of lingering side effects, particularly for folks on the
48 week regimen, I have to say she's delusional...

Cheers

/greyhackles
amzolt - 27 May 2008 20:56 GMT
>... I have to say she's delusional...

> /greyhackles

She is only a PA (though experienced) and it is a VA hospital and
there is no rigorous follow-up but for the 6-month and 1-year viral
loads.
If I hadn't called her, I would have never heard anything from them
about duration of sides.........
I appreciate them helping me (hopefully) kill the dragon and the
government for funding it!
I don't think Vets are real good about giving feedback--ya know, the
"Naw, I'm fine" attitude...

~ Alex
dBo - 27 May 2008 21:43 GMT
Delusional at BEST....tho I would have to say I was feeling a heck of
a lot better after a month off the nasty drugs, it took a lot longer
to feel cleared. My underdstanding was that it takes a full 6 months
for the drugs to totally clear your system. Hang in there Alex, it
only gets better from here :)
Paul - 28 May 2008 15:47 GMT
On Tue, 27 May 2008 13:43:49 -0700 (PDT), dBo <frizzy526@yahoo.com>,
in message ID
<7cc7dbca-1bfd-4db7-aded-a0fcfe66bc9b@m36g2000hse.googlegroups.com>,
in the newsgroup alt.support.hepatitis-c wrote:

>Delusional at BEST....tho I would have to say I was feeling a heck of
>a lot better after a month off the nasty drugs, it took a lot longer
>to feel cleared. My underdstanding was that it takes a full 6 months
>for the drugs to totally clear your system. Hang in there Alex, it
>only gets better from here :)

My experience was that I felt free of more obvious side effects after
a month but the bad temperedness and vague, intermittent fatigue was
around for a few months after.  At the time I wasn't sure if they were
the lingering after effects of tx but I would say there were gradual
improvements possibly for 6 months after so I suppose they must have
been.  Having said that, it was only 2 - 3 weeks before life became
tolerable again though I'm not sure the people around me saw it that
way  :-)   .
Paul - 28 May 2008 15:49 GMT
On Wed, 28 May 2008 15:47:41 +0100, Paul
<dontspamme@westgreen.freeserve.co.uk>, in message ID
<6trq34dhk2sa519ll9m1nu0bcqfib0phc0@4ax.com>, in the newsgroup
alt.support.hepatitis-c wrote:

>On Tue, 27 May 2008 13:43:49 -0700 (PDT), dBo <frizzy526@yahoo.com>,
>in message ID
[quoted text clipped - 15 lines]
>tolerable again though I'm not sure the people around me saw it that
>way  :-)   .

Just an addendum to my own post.  I was on a 24 week tx so I probably
got off much lighter than some regarding after effects.
TX-012 - 28 May 2008 05:44 GMT
> As for the duration of lingering side effects, particularly for folks on the
> 48 week regimen, I have to say she's delusional...

For those of us doing 72 weeks, any guesstimate as to a range of time
needed to recover from tx?
greyhackles - 28 May 2008 06:52 GMT
>> As for the duration of lingering side effects, particularly for folks on the
>> 48 week regimen, I have to say she's delusional...
>
>For those of us doing 72 weeks, any guesstimate as to a range of time
>needed to recover from tx?

Probably not much different from those on the 48 week plan, though of course I
can't speak with any authority, mostly just conjecture and reading what the
few folks that traveled that road have written.

It takes about 6 months for the worst of the side effects to show up (right
about the time the 24 weekers are done - lucky bastids ;-) and while those
sides usually don't get much worse from that point, the body just gets
physically worn down for each successive month on tx - especially true for
those who experience significant anemia. So while the drugs may take only a
few months to completely clear, there's a lot of physical rebuilding that
needs to take place.

Trying to stay in as best shape as possible while on therapy will help with
the aftermath, but for some of us just making it through each day was hard
enough - never mind finding the energy to exercise in any meaningful manner.
Those who aren't as beaten down on tx will surely recover quicker...

Cheers

/greyhackles
TX-012 - 28 May 2008 07:23 GMT
> >> As for the duration of lingering side effects, particularly for folks on the
> >> 48 week regimen, I have to say she's delusional...
[quoted text clipped - 22 lines]
>
> /greyhackles

Thanks. What was your recovery process like?
greyhackles - 28 May 2008 18:09 GMT
>> >> As for the duration of lingering side effects, particularly for folks on the
>> >> 48 week regimen, I have to say she's delusional...
[quoted text clipped - 24 lines]
>
>Thanks. What was your recovery process like?

A roller coaster ride ;-)

I had suffered from extreme anemia - two months into therapy my HGB was barely
above 8g/dl. I felt like I was at Death's Door at that point. Still, it took
another month before my bcld finally referred me to a hematologist, who
immediately started me on Epogen 40KIU/week. A couple of weeks later he
boosted the EPO to 60KIU, and a couple of weeks after that my HGB finally rose
to between 9 and 10gl/dl, where it stayed for the remaining 33 weeks on tx.
Still ridiculously low for a male, of course, it kept me mostly vertical, and
I did not suffer any dosage reductions in the combo meds through the entire
course of therapy. But anything resembling physical therapy was just not
achievable.

Two weeks after completing tx, my HGB started rising dramatically. By the end
of the first month it was above 12g/dl, and a few weeks later it was back in
the normal range above 15g/dl. Over those 6 weeks there was a correspondingly
dramatic improvement in overall well being, and I was able to start expending
energy again, but there were still all kinds of remaining collateral issues
that took much longer to resolve.

I'd lost so much muscle mass (I lost 40 pounds off my 6'5" frame over tx) it
took almost a year to get physically back in shape. My hands had developed
deep scar tissue at the finger joints from skin splits and cracks (it was a
particularly cold and dry winter during the worst of my therapy) and it took
well over a year for my hands to fully heal and the fine motor skills to
return.

More positively, the rather mild "brain fog" I experienced pretty much
resolved in the first month post-tx. And I was fortunate that I never really
experienced the infamous "rage" - I think I was just too physically wiped out
to muster enough energy for that.

Trivial stuff like hair changing back from dead-straight to my naturally curly
state took about 6 months (and looked just as weird going through that process
as it did going from curly to straight at the front end of tx ;-) And the mild
skin rash on my legs and arms only took about two months to fully resolve.

Things like taste and smell also resolved quickly - within a few weeks of
ending treatment I could enjoy and/or tolerate pretty much everything that had
made me instantly nauseous during treatment. For instance, the whole household
had to switch to non-scented bath soaps and shampoos and avoid applying
deodorants and perfumes while inside the house while I was in the depths of
therapy.

So...Bottom line, full recovery was a fairly drawn out process to get back to
being "pre-tx me", with some things only taking weeks and others taking many
months to a full year. But I expect my case would be skewed more towards the
"worse case" recovery model, almost entirely due to the collateral damage
caused by the anemia I experienced - which, fwiw, was clearly shown to be
two-fold, both hemolytic due to the Ribavirin, and aplastic due to the
Interferon. Not typical at all...

Was it worth it? Hells yeah it was worth it!!!

Cheers - and may you travel a much shorter road to recovery! :-)

/greyhackles
TX-012 - 29 May 2008 01:21 GMT
> I had suffered from extreme anemia - two months into therapy my HGB was barely
> above 8g/dl. I felt like I was at Death's Door at that point. Still, it took
[quoted text clipped - 20 lines]
> well over a year for my hands to fully heal and the fine motor skills to
> return.

I'm sorry to hear things were so hard for you. My anemia was quite
bad, but now on 60,000 IU of EPO/week my hematocrit is at least over
30, and that makes a huge difference in energy levels. Fortunately,
I'm not experiencing the massive loss of LBM nor the skin/joint/
coordination problems---I found early on that upping my dosage of
Omega-3s seemed to help skin problems quite a bit.

But reading the above, I'm really astounded that anabolic steroids are
not used more frequently either during or after hep c tx. A modest
cycle---say, 300mgs testosterone+200mgs Deca-Durabolin/week for 10
weeks (followed by clomid), beginning on the last day of tx would have
allowed you to recover your LBM  MUCH more quickly, and would have
also had an extremely beneficial effect on joint/skin problems.

With--almost certainly--no significant sx.

Likewise, had you been able to cycle on and off steroids during tx,
you would have felt far, far better and would have lost far less, if
any, LBM.

(Actually, I'm not really astounded. AAS [anabolic-androgenic
steroids] are right up there with Islamofascism, flag-burning, rock
cocaine and global warming as one of the Big Bad Evils which Threatens
to Destroy Life As We Know It, Gawd Bless America, Hee-Haw, Hee-Haw!)
amzolt - 29 May 2008 11:34 GMT
Whew!
Just in the time from Greyhackles first response to the last one, I
felt a bit better; not to mention my moral fiber strengthening from
all the wonderful feedback, which, AGAIN, shows me that I went through
(and am s-l-o-w-l-y come out of) the toughest test of my life...

Thanks all!!!

~ Alex
 
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