let me please,introduce myself......

[52TELE]

Greetings to the pale and down trodden. I've been away since relapsing last fall and I am back for another shot (pun intended) at it. Here is my history.
50 yr old male lives in Dallas area.
HCV genotype 1a
Initial VL 2.2 million
bx spring 2005 grade 2 stage 3.
Started .5 ml pegintron and 1400 mg ribavirin March 2005
Hemolytic anemia early on. Started 40,000 units Procrit late April 2005
HGB maintaining 11.5-12.5 .
2 log drop at 12 wks but not UND
UND at 16 wks . Extend treatment 4 wks.
Virus breakthrough at week 30 , VL is now 450.
Retested with Heptimax at week 34. Results indicated VL of 725.
Week 35 (11/01/06) stopped treatment. IT AINT WORKIN.

11/13/06 had surgery on my elbow that I had to put off during treatment.
I was afraid of infection.
12/21/06 in the hospital for infection in left elbow from surgery.
Stayed in hospital until 12/24/06 .
Started wearing wound vac on elbow 12/25/06 and wore until 3/19/06.

[52TELE]

2/01/07 , had to see infectious disease doctor , elbow still infected.
Started I.V. of Vancomycin with portable  I.V. pump for 7 weeks.
Wore wound vac on left shoulder , I.V. pump on right shoulder.
Yeah baby... life is good. I have had the vac and  I.V. off for 4 weeks now and things are really looking up.
DONT EVER LET ANYONE TELL YOU THIS TREATMENT IS NOT EFFECTING YOUR IMMUNE SYSTEM.
Now that I have that little fiasco behind me , I'm re-starting the INF maintenance therapy this Sunday.  .4 ml pegintron .
I stopped treatment four and a half months ago and my ALT/AST haven't risen above 34 and 35 respectively. I've been very lucky. Hopefully I can ride this thing out with just the maintenance INF until something promising is made available for us.
Life really has been great since stopping treatment and right now I feel better than I have in YEARS. No joke. Now I'm going to screw that up by starting this treatment again.  What an idiot.

[rosebud57]

sorry you have had to go through so much. hopefully, this next tx. will be the one and you will clear for good.

[WillPower]

Is there a web site where HCV victims can post their individual statistics such as the one posted by 52TELE?  Why not have our own epidemiological data base?  We could compare those with different tx, diet, longevity...etc!  What a GIANT help it would be for all of us.  

[bnowik]

Hi! you,
I remember you posting, sorry about all the crazy stuff your going through.
just wanted to say hello and welcome, welcome back i mean.  i am now 61 of 72, geno1a.

[FlGuy]

Nice to see you.  When I read the title, I though of Mick Jagger's song of a similar beginning.  Glad to hear you are feeling better.  Maint Peg is a resonable option.  Sounds like Schering, or will it be Pegasys.  Over the months, more people who have expereince in Maint seem to lean towards Pegasys.  (Mike Simon and Rev, , as two examples - I think)

[nygirl7]

Sorry to see you back.  It sounds like you've been battling the battles of life. God I how much I wish we could just have an easier ride, don't you?

I hope that this time is IT and you never have to come back!
(not that we don't love ya but well you know...)

Debby

[copyman]

welcome back and glad you are feeling better. quite a ride you had there.

[sunspot]

Thanks for checking back here. You sure had a crappy 4 months. So sorry to hear about that. How's the elbow working now?
Have you had another VL load test done lately?

[painterlady13]

I too am sorry to see you "had" to come back. Wish it was a "just to pop in and say hi"   Sounds like you had a rough winter.  
Good luck with the IFN maybe this will be it!!!  sure hope so for your sake.
Nicki

[goldyn]

Sorry to you see you went through what you were worried about before you surgery, im glad your elbow heald!!!
                                God Bless You on this next go round

                                                     Goldyn

[jmjm530]

Hi Tele, good to hear from you again. Have you given consideration to the VX-950 Prove 3 trials for prior non-responders like yourself? Good chance you'd only have to treat for 24 weeks and unlike mainteance, you get a shot at SVR.

All the best,

-- Jim

[52TELE]

Hey , I used to know a girl named NYgirl , no 7 though.
Did you add your maiden name to the end of it? What was it like growning up with a last name like 7?

[52TELE]

Hey FLGuy , I hope your doing well. Your question kind of took me by suprise. As far as I know , I'm using Pegintron-alpha. Can you elaborate any on the difference , and how are the other guys doing on the maintenance?

[52TELE]

Hi Jim , glad to see your still hanging around here on the corner. whats your status Jim?
No more trials or long shots for me. The next time I take a full run at this thing it will be with a guaranteed result. Its just too hard Jim to not be able to expect SVR at the end.

[52TELE]

Hi you guys , thanks for stopping in and saying hello. I'm looking forward to talking to you guys in the future.

[ladybug52]

Have you changed dr's or are you going to the same place? Sounds like h#ll what you've been thru. Are you able to play guitar? Any problems with straightening the arm or using it?
Best wishes for svr this time.

[52TELE]

Hi rosebud57 , thanks for the encouragement.

[jmjm530]

Understood, but do keep an eye out on more study data that will be released all throughout the year. If if turns out they get like 70-80% SVR in only 24 weeks, then it might be time to come off of mainteance and give VX-950 a try. I'm SVR and my last viral load test shows me non-detectible a year after treating. Thanks for asking.

-- jim

[52TELE]

Hi Bug , yep same Dr.   -Karen Kindler at Troutmens office in Ft. Worth. I only have to see them every three months unless something unexpected pops up. I am still playing , no where in public I might add , for the last four months. Medical devices on each shoulder and a stratocaster around my neck was a little much. It was hard enough just dealing with the med devices and a seatbelt. Tangled up in Blue.

Are you doing OK?

[Bill1954]

Oh, man! It sounds like you

[FlGuy]

The Pegasys Maint vs. PegIntron maint has been discussed here over the months (years).  In the two expamples I recall clearly, both people said that maint. using Pegasys was more 'tolerable' than PegIntron.  Rev was extremely adamant about it.  My expereince, although not maintenance but on tx once PegIntron and one Pegysys tx, is also that Pegasys is more tolerable than PegIntron.  These are the 'ancedotal' stories, not factually based.  Effects of the IFN's can vary from person to person.  If I recall more correctly, the maint dose for Pegasys is 90 mcg, which is half of the normal tx dose in non-weight based combo dosing.

[FlGuy]

Pegasys is Alpha2A, PegIntron is Alpha2B.  Just wanted to make that distinction since your post read 'alpha', which could be either.  Also like's Bill's concept of switching pegs from what you used the first time to the other one for maintenance.

[Pdilly]

My you are back.   I always wonder what happens to people when they dissapear.   It does sound like you have not had the best of luck.   Good luck tx the next go around.

[ladybug52]

I treated with Karen but stopped after 16 weeks. She did a 3 week pcr <50 detection, and it was und, my pcp did a heptimax at 4 weeks and it was und.She would not order the heptimax for me, and wasn't going to order a 12 pcr since I had the early und. She agreed to, but again wouldn't order the heptimax, did the <50 test, saying 'und is und.'  My pcp ordered lab work, cause Karen was on a 2 week vacation, and orderd another heptimax at week 15. When I got the results back I was just about to do shot #17. But I didn't. I know the numbers and my increased risk for quitting early but, I chose to stop.
Glad to hear from you,
Bug