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Medical Forum / Diseases and Disorders / Hepatitis / February 2009

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Dragon's Back

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sojo - 27 Jan 2009 02:05 GMT
Got the results of my six month post treatment blood test - the damn
dragon is back. I kind of knew about a month ago as a lot of the
symptoms  started up again, fatigue and joint pain mostly. My doc asked
me if I wanted to revisit treatment options, but I have told her to wait
a day or two as I need to digest the bad news first.

Guess I got my dragon tattoo to celebrate the bastard's death a little
too soon... must have jinxed myself.

Question for those of you who are going, or have gone thru the joint
pain thing... did you experience numbness and weakness too? I have lost
some feeling and most of the strength in my hands and fingers. I do a
lot of woodworking, well I used to, and the weakness and numbness is
really getting in my way.

Anyway, my best to everyone on here - lets stick together and keep up
the fight.
metspitzer - 27 Jan 2009 02:36 GMT
>Got the results of my six month post treatment blood test - the damn
>dragon is back. I kind of knew about a month ago as a lot of the
[quoted text clipped - 4 lines]
>Guess I got my dragon tattoo to celebrate the bastard's death a little
>too soon... must have jinxed myself.

Sorry to hear you relapsed.

You do know that a good way to be infected with HepC is by getting a
tattoo?  You may have been freshly infected.  Would be interesting to
know if you have the same genotype.

What genotype do you have?
How long did you treat?
What treatment meds did you get?
Dwight - 27 Jan 2009 04:48 GMT
> Got the results of my six month post treatment blood test - the damn
> dragon is back. I kind of knew about a month ago as a lot of the
[quoted text clipped - 13 lines]
> Anyway, my best to everyone on here - lets stick together and keep up
> the fight.

I'm sorry the dragon has come back. I've gone through tx twice and have
been unsuccessful at killing it. I like the idea of the tattoo. If I
ever kill the dragon maybe I'll get a tattoo of a dead dragon on my hip.
That way once the pain is gone I can forget about it and only think of
it when I look behind me as I go on with my life.

I have a lot of problems with all of my joints and yes I do have some
weakness. I play a lot of guitar, thanks to a few old timers around
here, to keep my fingers and hands limber. It doesn't always work, but
the guitar helps me forget the pain. A big plus is that playing has
introduced me to a bunch of new friends.

To be honest, not sure how much of the joint pain is from the hep-c and
how much of it is from having my adventuresome youth catching up with me.

Dwight
sojo - 27 Jan 2009 05:03 GMT
>> Got the results of my six month post treatment blood test - the damn
>> dragon is back. I kind of knew about a month ago as a lot of the
[quoted text clipped - 30 lines]
>
> Dwight

I play guitar too. Quite a few years ago, I started noticing a degree of
hand weakness and pain when playing. I've played to many years to stop,
so I just persevere. Actually, I borrowed the dragon idea from someone
here - I think. No sure who it was, but I remember they had mentioned
getting a tattoo after receiving the good news.
TX-012 - 27 Jan 2009 07:24 GMT
> Got the results of my six month post treatment blood test - the damn
> dragon is back.

I'm so sorry. I have @ 3 weeks to go out of 72, and that is my
nightmare scenario.

Please email me if you want to talk.

I don't know how you feel, but if this happens to me---and I have a
50% chance it will---if financially possible, I will retreat. I may
wait until I can access the better drugs either via clinical trial or
FDA approval, but...if there is one thing I'm both of us have learned
it's that we are tough bleeping cookies to go through what we have.

Hang in there.
sojo - 27 Jan 2009 17:01 GMT
>> Got the results of my six month post treatment blood test - the damn
>> dragon is back.
[quoted text clipped - 11 lines]
>
> Hang in there.

Thank you for the support and I will be keeping my fingers crossed that
your treatment is successful. Yes... retreating is sounding pretty
tempting right now. My partner is very supportive and I am fortunate for
this, but I hate seeing the distress this is causing her. Last summer
right after the last shot, I took off on our boat for two weeks alone
and anchored somewhere quiet because I had gotten to the point where I
simply couldn't be around anyone. A little cold for that right now though.
topcat - 28 Jan 2009 03:10 GMT
> >> Got the results of my six month post treatment blood test - the damn
> >> dragon is back.
[quoted text clipped - 21 lines]
>
> - Show quoted text -

Sojo, sorry man, that sucks big time.  i have no advice to give, I
don't know what I'd do in your shoes.  this f*****n thing really
pisses me off.  i'm in my 12 month of tx and am pretty scared as i
reach the finish line.  I think it's great you have some guys to play
music with. I too am a git player and it's really the only thing that
keeps me "sane".  I wish I had some guys to jam with, it gets old
playing along with Santana,  he just can't keep up with me :)
let us know what you decide,   ....here's hopin you have someone close
to you, and a better day.
tc
Dwight - 28 Jan 2009 05:30 GMT
>>>> Got the results of my six month post treatment blood test - the damn
>>>> dragon is back.
[quoted text clipped - 27 lines]
> to you, and a better day.
> tc

Hey TC, where do you live? When I was doing tx the last time Elmo, Russ,
and Shaun got me back into playing. I started trying to learn how to
play better then. I'm still not any good, but I play with people from
all over the U.S., and I've gotten to the point where I can play in
front of people without getting too scared. :)

Dwight (in the Dallas/Ft. Worth area)
topcat - 29 Jan 2009 01:04 GMT
> >>>> Got the results of my six month post treatment blood test - the damn
> >>>> dragon is back.
[quoted text clipped - 37 lines]
>
> - Show quoted text -

Hey D,  I live someplace so cold that even the animals  leave in the
winter; Montana.  so I doubt you're in the neighborhood, but man I
would love to hear the jams our group could make.  I can hear it now,
"i got the low-down dirty hep-c blues"!  but still, i'd love it if you
guys were close. I used to play the bar scene back in my 20's and
early 30's before I 'cut my hair and got a real job".  I've always
kept an axe handy.  After my divorce about 5 years ago I really got
back into it.  I built a sound studio over my garage and used to crank
up Santana and jam along.  I was getting together with some guys with
the idea of performing again when I got sick.  I had just purchased a
new mic, and recording equipment, 2 new guitars and a amp and a really
great "hi-end" stereo. Since then, I can't handle any kind of
emotional intensity and just stopped listening and playing.  for some
reason, the music really aggravates my sypmtoms, but not always, it's
so freekin weird you know?  the mood swings just piss me off.  But
I've made a decision that WHEN I torch this freakin dragon and stab
him in the heart, I'm taking a road trip around the country and
meeting some of you guys and buying you dinner.  If you get a chance
to record yourself send me a sound clip!
take care Dwight
tc;  by the way you guys, my name is Joe, think after a year and all
I've gone thru with you guys, you've earned my trust.  so, from now
on, TC is Joe
Cactus Jammies - 29 Jan 2009 02:46 GMT
"topcat" <hopin@live.com> wrote
Hey D,  I live someplace so cold that even the animals  leave in the
winter; Montana.  so I doubt you're in the neighborhood, but man I
would love to hear the jams our group could make.  I can hear it now,
"i got the low-down dirty hep-c blues"!  but still, i'd love it if you
guys were close. I used to play the bar scene back in my 20's and
early 30's before I 'cut my hair and got a real job".  I've always
kept an axe handy.  After my divorce about 5 years ago I really got
back into it.  I built a sound studio over my garage and used to crank
up Santana and jam along.  I was getting together with some guys with
the idea of performing again when I got sick.  I had just purchased a
new mic, and recording equipment, 2 new guitars and a amp and a really
great "hi-end" stereo. Since then, I can't handle any kind of
emotional intensity and just stopped listening and playing.  for some
reason, the music really aggravates my sypmtoms, but not always, it's
so freekin weird you know?  the mood swings just piss me off.  But
I've made a decision that WHEN I torch this freakin dragon and stab
him in the heart, I'm taking a road trip around the country and
meeting some of you guys and buying you dinner.  If you get a chance
to record yourself send me a sound clip!
take care Dwight
tc;  by the way you guys, my name is Joe, think after a year and all
I've gone thru with you guys, you've earned my trust.  so, from now
on, TC is Joe

Hey Joe (where ya gonna go... with that gun in you HAND!!?  da_da da_da
dah!)

You were talking about the weird energy trying to play and record while on
tx.  Ha! reminds me of when I was trying to do exactly the same thing.   I
just dropped it all finally when I realized all the patch cords had won, had
beaten me to an emotional pulp.  A nest of vipers, from the guitar, to the
pedals, to the power supplies, to the amp, to the mixer, don't forget the
power bar, then to the computer... argghhh!  It looked like a tangle of
spagehetti snakes... I just wanted to get it all together, and on the times
that I did, I was too worn out to tune up...

get it done, Joe

cactus jammies
Dwight - 29 Jan 2009 04:38 GMT
>>>>>> Got the results of my six month post treatment blood test - the damn
>>>>>> dragon is back.
[quoted text clipped - 58 lines]
> I've gone thru with you guys, you've earned my trust.  so, from now
> on, TC is Joe

Joe, I started playing more acoustic while on tx and I still am. Kind of
shift in my music preference while on tx. The acoustic seemed to calm me
down. I'm doing some rhythm and vocals now, something I never would have
done before. My song list covers everything from The Band, Dylan, Jimmy
Buffet, Eagles, Tom Waits, Glen Campbell, CCR, Beatles, John Prine,
Springsteen, Bob Seeger, a little Santana, as well as a few more that
escape me at this time. If someone had told me I would be getting up in
front of coffee houses, parties, large groups of good guitar pickers and
playing "and" singing when I started that last round of tx, I would have
thought they were crazy. I've got a full set up of recording equipment,
haven't learned how to use all of it, but I've got it. The music helps
keep me a little sane or insane in a different direction. :) I'm set up
to do sound clips, just not brave enough to listen to my self yet. I
think I'm on 5 or 6 cd's now and have to skip my songs. :)

I do have some music inspired by Bob Dylan's "Tangled Up In Blues" and
"Stuck inside of Mobile with those hep-c blues again". I'll see if I can
look them up.

Dwight
Cactus Jammies - 29 Jan 2009 02:48 GMT
> Got the results of my six month post treatment blood test - the damn
> dragon is back. I kind of knew about a month ago as a lot of the symptoms
[quoted text clipped - 13 lines]
> Anyway, my best to everyone on here - lets stick together and keep up the
> fight.

Hi Sojo,
 Join the crowd.  Sorry to have to welcome you.  I got arthritis in my
fingers and toes, about the same time the Dragon sucked back into
me.  Gone now but it was distressing, I gotta say.

take care

cactus jammies
sojo - 29 Jan 2009 03:12 GMT
>> Got the results of my six month post treatment blood test - the damn
>> dragon is back. I kind of knew about a month ago as a lot of the
[quoted text clipped - 22 lines]
>
> cactus jammies

Thank CJ... if it was only the arthritis it wouldn't be so bad. I've
struggled with joint pain for years. This is different though as there
is a degree of pain, but the most distressing part is the numbness and
tingling in my hands and forearms. I have an appointment scheduled with
a neurologist and EMG test. Apparently the symptoms are likely a result
of Peripheral Neuropathy.

Today, I was at the store - took me forever to get my visa card out of
my wallet - I just couldn't get a grip on the damn thing, much less feel
it. The clerk started laughing at me - good thing I wasn't still on
treatement as I would have lost it on the poor woman. However, cooler
heads prevailed as I managed to keep my emotions in check and did kind
of see the humor in it..
Thip - 29 Jan 2009 23:33 GMT
> Got the results of my six month post treatment blood test - the damn
> dragon is back. I kind of knew about a month ago as a lot of the symptoms
[quoted text clipped - 13 lines]
> Anyway, my best to everyone on here - lets stick together and keep up the
> fight.

Man, sojo, so sorry to hear this.  Bad enough the dragon's back but then he
had to drag along a few of his buddies to add to the misery.  Typical.

I don't have numbness but I do have weakness in my left leg.  My hip's been
killing me for about 3 weeks and I thought if I toughed it out, it would ago
away like it always does.  Oh, heck no, not this time!  I finally broke down
and went to the doctor and it looks like I may be facing hip replacement.
My first response?  "You got to be kidding!  I'm not old enough!"  He kind
of laughed at me and recommended major rest, and my next intelligent remark
was, "Well, I've got a colt on a 5-day course of penicillin and he cannot
miss his shots."  I thought Doc was going to fall off his little chair.
That excuse was definitely a first for him.

Oh ye of little faith, we HCV patients are known to do miraculous things
under impossible circumstances.  ;-)
topcat - 30 Jan 2009 01:39 GMT
> Got the results of my six month post treatment blood test - the damn
> dragon is back. I kind of knew about a month ago as a lot of the
[quoted text clipped - 13 lines]
> Anyway, my best to everyone on here - lets stick together and keep up
> the fight.

Sojo, are you feeling any better today? hope so,  have you decided
what to do yet? .  just curious  because I don't know you yet, what
brand hvc did you have, 1-a?, any level scirosis? how long did you
treat, 1 year?  hang in there man, later, Joe
sojo - 30 Jan 2009 15:36 GMT
G3, so 24 weeks of treatment that I finished last July. From what I have
read, G3's are more prone to having a fatty liver, which is what led me
to finding out about the HCV a couple of years ago. Thing is the
symptoms seem to have come back maybe even worse than before. Although
the loss of feeling in my hands is a new one which is getting a bit
worse each day.

At this point I am leaning towards treatment again. Perhaps the second
time will work. When I think about doing another treatment, my fear is
what it does to those close to me, as last time I became somewhat of a
psycho. I will have to find a cave somewhere to hide out in... Although,
I guess I should keep an open mind as history doesn't necessarily repeat
itself. So the process is I go to a neurologist first to determine the
numbness which my doc feels is HCV related. Then back to the clinic to
start treatment again.

>> Got the results of my six month post treatment blood test - the damn
>> dragon is back. I kind of knew about a month ago as a lot of the
[quoted text clipped - 18 lines]
> brand hvc did you have, 1-a?, any level scirosis? how long did you
> treat, 1 year?  hang in there man, later, Joe
john - 01 Feb 2009 02:21 GMT
> G3, so 24 weeks of treatment that I finished last July. From what I have
> read, G3's are more prone to having a fatty liver, which is what led me
[quoted text clipped - 36 lines]
>
> - Show quoted text -

Hi sojo,
Sorry to hear the news.If you are thinking about retreating consider
72 weeks of infergen if your body can take it,especaill y if your are
genotype 1a and close to cirhossis.I made it thru my 6 month post
treatment but im still skeptical.Going for 1 year in june but i never
gave up.3 treatments total but the nightly infergen was tough.It can
be done thoe.Best wishes to you..........
john
 
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