34 Million VL - Upload

[Karay]

I just returned from my doctor's & received my 12 week results.  My last limits were @ 34,000,000 - my liver is stage 0/grade 0 (very lucky considering the fact that I've had this for 20 years) I'm geno type 1A.  I'm 38 yr old white female - great shape, 125 lbs.  I've been on infergen (daily shot) and Rib @ 4x per day.  I'm anemic and have a low white count but the doctor does not want me on Procrit or Epogen.  So anyway - my results:  AT first I was VERY upset cause the bloodwork results were not in my file.  So I have to wait while they get faxed over.  My doctor then came running into the room - he was all sorts of excited - he gave me a big hug & then announced that my levels were now "below detectable levels".  He said he couldn't believe the results considering the fact that my VL was so high!  Since I've only been on the meds for 3 months he wants me to stay on for another 3 months - then re-test.  As much as I'd love to get off this since the side effects are killing me, I think I should stay on it & really kick this virus in the *&#.  Any thoughts or suggestions would be greatly appreciated!

[friole]

That is amazing. 34 million to nothing.  What was the sensitivity of your test?

http://www.hivandhepatitis.com/2005icr/aasld/docs/111405_h.html

This is a link I copied from TN Hepguy's post of news items dated 11/14/05 -- it is about being a super responder at week 4  and treating for 24 weeks.  You will have to copy and paste, or go to his thread for the direct link.

Did you have a week 4 test?  I am not sure about protocol for going 24 weeks when you are non detectable at 12 weeks.  I think I would continue for the 48 weeks if I were you.  I am also a geno 1a.  I was detectable at week 12 at 40 IU/Ml -- if I had had the test only sensitive to 50, I would have thought I was clear, but in reality I was not.

friole

[strator]

Absolutely Great news!! I agree- take that virus and "hit it! kick it! Make it write bad checks!" -never to show it's face again!
Thank you for sharing such good news. Hope you get a break with the anemia.
Don

[Karay]

My doctor explained that the test does not go below 50 -

[Tonyz]

That is fantastic news! Stay the course and kick some more serious HCV Virus butt.

<font size="6" color="#6600CC">Congratulations</font>


          God Bless

           TonyZ

[cuteus]

GREAT RELIEF! to see your efforts are paying off!

how come you are on infergen? you treated before? I can't remember your stats. I wish he would give you better QOL by giving you Procrit, though.
on with the fight!

[FlGuy]

That's great that you have been vanquishing the virus over the past 12 weeks.  Your comments about anemia and low wbc were a little concerning.  You will hear about the intervention available for both (procrit/epo and neupogen/neulasta).  When you get lab results you should consider a conversation with your doc.  With the progress you have made, your goal should be continuing TX without the fear of interruption.  Continued good luck in the good fight. TX sucks, but it beats the alternative.

[Karay]

I was on a weekly shot about 2 years ago.  I quit after 3 months as my lung collasped & it took me forever to get over it!!  I did respond to that treatment - not entirely though.  My levels went from 2 million to this 34 million count.  When I got those high results I asked for the strongest med available.

[ASmile4U]

Congratulations and thank you for sharing your story.  It puts my mind at ease a bit knowing this tx works!  I have an appt with my doc this afternoon, I will start Infergen as soon as meds arrive.  :)

[mikesimon]

Congratulations!!!!! Good luck. Mike

[NYgirl]

I am the most PRO-Procrit/Epogen person on the board now after going through that horrible anemia.......I certainly would make sure you check your numbers and then as a Geno 1 think about treating longer - making sure to get them ALL and getting Procrit/Epogen/Neulasta whatever if needed.

Since you have already treated once before...I would think the doctor would want to make sure you treated long enough to get them for GOOD.

I thought there was a ratio on how long to treat AFTER being undetectible? Something like that?

Congrats on the great news!

[sunspot]

Great news karay. That’s one heck of a drop. It’s so nice to see your doc was excited also.
You should retest every 3 months for the whole 48 weeks of tx.
May I ask why your doc does not want to give you Procrit? What was your Hgb before starting tx and what was it at your 3 month test?

NYgirl.
Treatment is for 36 weeks after no VL.

Dana

[NYgirl]

Thanks Dana you know I knew there was some number that i should KNOW but could NOT bring it in to this deer tick sized brain of mine!

So if you have a clear at 12 wks you should do 36 more = 48 now I GET IT!!!!!!!   :)

Well for someone like me a combo 1a 1b that sounds like enough...ha I don't need anymore thanks!  ;-)

[friole]

I am even more amazed that the doc would be willing to stop at 24 weeks since this is the second time you have treated.  You are so brave to have chosen this hard road after a collapsed lung on the first try, however you were right, and knocked out the demon.  

Could you ask the doc for a referral to a hemotologist (that is a blood specialist who can monitor your bloodwork through the remainder of treatment). He could rx the Procrit for the anemia if your main doc won't. I too am concerned about your anemia and hope you can get the docs to address that.

NY Girl - I am amazed how the Procrit picked you up.  So glad -- have they noticed at work too?  Do you still have a helper (or whater they were calling it)

Kathy

[crushed]

i wonder why he doesn't want to prescribe epoetin, i can tell you for sure there's no way i could tolerate tx without it. having thalassemia minor causing poor blood cell structure and being slightly anemic to begin with the riba wacked me big time, had me down to 9.4 hgb even after dosing 40,000 IU a week...had to double to 80k just to get back into the 11's.

congrats on your drop, if you can put any faith in the things you read i "think" the odds of SVR increase to 70ish% when you have a successful 12 week drop.

[PasoPerson]

A BIG CONGRATULATIONS to you.  I'm so happy for you.

And you have given me renewed hope to continue to the end.  I'm a 1a, find out next week my 12 week report.  

Again, way to go KARAY.

[vegas777]

wow, congrats!  that's incredible to have such a drop, outstanding!!

*dippers*

[worrywortmom]

It is such good news to hear that you are doing so well, my viral load is 9 million!.  You have given me hope that i too have a chance of beating this dragon. God was on your side fighting this virus you have been blessed. Anna

[sunspot]

Not to highjack but my CBC from yesterday had a Hgb of 9.6, down from 10.6 on 10-17. I've been on Procrit for 9 weeks and the darned Hgb <i>dropped</i>. Oh well, it happens. the good newa is my crit has now been increased to 2 shots a weeks. Wish me luck.

Dana

[friole]

wow - imagine what is would have been without the procrit.  I have read that the procrit will only bring up hgb a couple of points.  How mudh did it help before it dropped?  I also have read that you do need some iron stores for the procrit to work.  Has that been checked?  Surely this extra shot will be uplifting.  Hooray for Procrit!

[cquest]

I am so jealous and so glad for you! Maybe there is hope!
Cin

[cuteus]

ouch! I hope the increase in med increases your hgb! what a blow!

[painintheside]

Hope I am not being dumb (tx minded) but isnt epogen for dialysis patients and neupogen for us?

Sincerely,
Dana

PS Great news....congrats!

[cuteus]

epogen/epoetin/Procrit is to boost red cells production. Neupogen, well, I guess the prefix says it, is for Neutrophils( I just noticed the prefix) production.  Dialysis pts use the booster because of the anemia related to kidney disease, We use it because of the anemia from riba.

there are always things we don't know, how to learn them if we don't ask sometimes?

[beamishboy]

i've known 'bout my hep c for couple yrs..viral load was originally 4000000 after a winter of volunteer work in guatemala(grt for my sense of wellbeing&wonder) & every recommended supplement&megavitamin my viral load shot up to 23000000-yeow!! i became v depressed,soo angry & "hey,imagine that,i'm single again! decided to do th treatmnt..started yestrday & my viral load test was 9000000-keepin v busy building my own dream house on the watr,lotsa positive energy in that project...anyways my doc puts no great store in viral loads-"they go up&down,i'm not so concerned w them"-my response 'yeah,but that's how  you measure sucess ' sorry i'm so long winded but i really need to connect  w th community

[FlGuy]

Recent discussions here included the fact that viral loads do fluctuate, before you start treatment.  One you've started there should be a continued reduction each week.  This reduction is found in a PCR (viral load test).  Take a look at some of the information in http://janis7hepc.com/.  You'll find a lot of information about HCV, treatment, side effects, viral loads,  suggestions (like drinking plenty of water)etc.  Welcome to the fight, but it sounds like from your experience you been there before.  Good luck, stay as well as you can and keep gathering information