VL gone up ????

[copyman]

hi, i just got back my baseline pcr and labs. labs all look good and got the ok to start tx. but i'm worried because my vl more then doubled since june when i was dx'd with hcv. my vl was 9 million then and this vl was almost 20 million! what would cause this jump in such a short time? i had the hep "A" vaccination about 3 weeks before this pcr, i think i had read it can cause the vl to go up, does anyone know about this or have any other explanation for this? is it worth me even attempting tx because i'm also 1a and now with this high vl thats 2 strikes against me acheiving svr. i was all geared up and ready to start tx then this. this damn disease just never lets up !!! you start to feel good and then get knocked back down. thanks for all your help here.

49M
1a
1/1
labs all normal
prob had this about 20 yrs

[sfbaygirl]

Hey, you are ready for chemo! VL's go up and down, don't worry about it! I have seen many here with higher VL than yours. I know how anxious one can be before tx and thinking about all the bad stuff, but you will do it. I had a high VL before tx and I was UND at 10 weeks. You can too. I am not sure what the correlation to SVR and beginning VL.

[cuteus]

no one has come up with an explanation as to why viral load can vary so dramatically, but it does, and it means nothing according to most research. you can have a drastic change in VL from one hour to another.  Mine was 376,000 one month and the next was over a million. It means nothing.

[mikesimon]

Don't get undone by VL Copyman. It's apt to jump around a lot till you start TX. Good luck. Mike

[Wasabi Pea]

Hey Copyman,

Don't worry about your vl levels too much.  They do vary up and down, and can vary quite a bit.  If the rest of your labs are doing nicely, then you'll be fine.  You get to look forward to watching those vl levels drop as you tx.

On a side note, sort of hijacking a little, just wanted to post that my doc called on Saturday.  My three-month post tx labs came back negative.  Yay!  Whew!  Three more months until the six-month mark.  Fingers crossed!

Anyway, very good luck to you!  No worries.  You'll do fine.

Hope everyone else is doing well.....

Angela

[sfbaygirl]

Congrats! This is great news! I bet you are jumping up and down right now. I can't wait to get news like that. You are shy sticking good news like this in another thread! You should have your own headline!

How are you feeling?

[jmjm530]

COPY: my vl was 9 million then and this vl was almost 20 million! what would cause this jump in such a short time?
-----------------------------------------------------
Quite possibly nothing.

There may be no difference as the RNA assays (tests)can have a variance of 1 log. Therefore 9 million IU/ml and 20 million IU/ml could actually represent an identical amount of virus in the
blood.*

This does not mean however, that low pre-tx viral load -- under 600,000 IU/ml -- is not a positive predictor of SVR, as a number of studies suggest this, and I guess that has to do with the mathematics of log drops but not sure. In fact, I threw around the idea time ago the concept of timing treatment to coincide with VL dips. MKAndrew in his recent post has thrown around the same idea in terms of his own future treatment. But based on the module (see below) this probably would only work if VL is below 600 IU/ml and not make much difference as in the variance with Copyman.


* Source: Shiffman, Edimology and Tx Module, Clincal Care Option Web Site, Slide 24. http://www.clinicaloptions.com/Hepatitis.aspx

[jmjm530]

That would be below 600,000 IU/ml, not "600 IU/ml" as stated in last sentence of previous post.

[bobbyullc]

if you are only a stage 1/1 you also have the option of waiting a year or two to see when the new drugs will be come available. they are looking good. if you had hep for 20 years you are a slow responder and could wait a while to see. i would love to have your numbers.
bobby

[jmjm530]

Ditto to what Bobby said. Vertex SVR data should be available in about 1 year, if not sooner.

[merlino]

Is it harder to achieve SVR if you have a high VL or the more liver damage you have the harder it is? My VL has gone up and down over the years also. I am starting tx next month. It always scares me to see my Vl go up. Last time it was 4mil.

[GrandOak]

My VL for tx:

Base   - 72 million
week 8 - 2.4 million
week 12 - 1.8 million
week 24 - 2.9 million

We've attributed the changes to a riba reduction from 1200 mg to 600 mg at wk 5 and a slow increase to return to 1200 on wk 20.

Now that I've gone to 1400 mg on wk 26 we are re-starting from then looking for 2 log VL drop from original 72 million in 12 wks (or wk 38, but most likely wk 39 if I stick with 6 wk doc follow-up).  If that turns out promising, then I've only got 65 more weeks of fun without sun on the HCV Peg/Riba/Procrit/Neupogen cocktail.  I only hope that I don't need to start looking at adding a red-packed transfusion chaser into the mix, upon which I'm riding the fence right now.

Bottomline, it seems VL jumps around and that YES riba most definitiely seems to figure into the formula.  I guess the overall goal is to see an overall decrease to UND, but that is not linear.  In fact, most studies I've seen do claim more of an exponential drop at start of tx with a gradual approach to a linear drop as tx progresses.

[Tater-ToT]

VL can go up & down own it's own....
I had been infected approx 23 years before starting TX, I had little to No Liver Damage & treatment was optional both times!

Originally my VL was almost 5 million.... when I relapsed it quickly jumped up to 6 thousand & two weeks later before I restarted TX the baseline had dropped to 1000 on it's own!

Maybe our bodies try to fight it off naturally on it's own so we get spikes occationally..??? I Dunno, VL has nothing to do with amount of liver damage or lack there of...I guess one guess is as good as another, yet it happens all the time!

To start TX, or to wait with low to no damage is certainly a personal choice as there is no way of predicting when or how fast it will progress... & the lower the VL & the younger we are the better the chance at beating it... & none of us are getting any younger...

If I should relapse again, I will be waiting on the newer drugs, but merely due to financial reasons!

Glad you got the Okay to get started... good luck with your decission "If" you are trying to make one!
:)

[NYgirl]

Just think of it this way......with 20mil v/l you'll only have to get to a much higher number to hit the two log drop!   ;)


Hey...I know it's not much but v/l isn't really that big a deal - it mostly is in our minds.  :)

[copyman]

man you peeps are quick, thanks to all of you for the fast responses. i was hoping to hear someone say they heard that the hep vac shots can cause the vl to increase. can it be possible that the virus is just waking up and will wreak havoc quickly? what is really puzzling to me is i have been doing everything right since i found out i had hcv in june, no alcohol(was only drinking maybe 6 beers a month for last 5 yrs),lost 15 lbs (now 200 lbs, 6'0), eating right, taking milk thistle & multi w/out iron. on top of that i had stopped smoking , drinking (a few times a week, binge drinking) about 5 yrs ago. i actually felt better before i quit the heavier partying 5 yrs ago. it was almost like abusing my body kept the virus at bay. for about 4 yrs i kept saying to myself why dont i feel better now that i have done the right thing. susprise! then this past june i was told i have hcv, something i never even heard of. in a few short months i have spent endless hours educating myself about this dreaded disease and one thing is certain it is very unpredictable!

[jmjm530]

Maybe my last post was unclear, but your viral load may not have increased at all. It just may be that the test is not all that sensitive per the reference cited in my previous post.

[Wasabi Pea]

Thank you!  I'm feeling pretty good.  I had quite a battle with the whole anemia thing.  This was actually my second attempt at tx...my first completion, though I went longer than average...about 62 weeks or so.  But my hgb has come up to 10.8 on its own.  I feel much better.  Just keeping my fingers crossed for the next one.  Am ready to shed this whole hep c cloak.

I'm starting to be less and less shy about telling people though.  I want people to get tested.  I found out through routine testing during a physical because I wanted to train for a marathon.  Because I'm not in any of the risk groups, I found out probably a year later than I should have.  My tests showed increased enzymes, but the doc thought nothing of it because I'm not at risk.

Anyway, hopefully the research comes through.  I don't wish tx on anyone.

How are you doing?  I've been a little out of the loop, so there seems to be some "new faces." <g>  Are you tx'ing or have you tx'd?  I hope things are going well for you whatever stage you're at. <g>

Angela

[sfbaygirl]

I am on week 20/48. It has been a rough road. I am sure glad I am not working, I know I couldn't have done it. I know what you mean about getting tired of wearing the cloak. Sometimes, I am afraid to tell people and other times I bring it up.

I bet it feels great to be off these dreadful drugs!

[Wasabi Pea]

It feels great to be off the drugs.  I feel like a new person.  The biggest improvement for me has been my emotional/mental state.  The other great improvement was my energy level.

I'm still a little low on the hgb scale, and I'm still waiting for my ferritin levels to drop some more.  What else?  Hair loss seemed to continue for a couple months afterwards, but seems to have slowed down.  Hopefully, it'll come back in all its "glory." <g>

But other than that, I can't complain.  Life's good.

Angela

[welderman]

My gastro told me viral load couldn't tell him anything. He said viral load would go up and down on its own. It was the bx he wanted to see to determine were I was at. I'll be starting treatment soon myself. I keep wondering if I should wait for new drugs.

51 male
geno 2b
2/2
viral load 9,000,000 IU/50ML
have had for 30 years

[cuteus]

man! or woman! I was wondering about your for weeks! and your anemia!  THAT IS GREAT NEWS!!! 3 months and you are negative!! You did it!! it is practically over, only a freak of nature will make that virus show its head again!  CONGRATULATIONS!
don't leave your seat on cloud 9, it has your name on it!

[Tater-ToT]

Your name makes me CRAVE Sushi...LoL
That's Fabulous.. Hope to be following in your footsteps soon...

Doing the Happy Snoopy Dance For You!!!
;)

[Mister beagle bailey]

Congratulation!!!!!!!!!!  I am so happy for you.

Can you give me some advise as you and I have thalassemia and I found out last week on my 3 month post tx PCR that I relapsed.  Any help is greatly needed.

Beagle

[GoofyDad]

Couldn't have happenned to a nicer gal. Congratulations!

[friole]

What great news.  I didn't remember that this waa your second treatment.  It sounds like you had a good plan going into it and it really helped the cause.  Even with this I know you suffered immensely from the anemia.  I am so glad your 3 month post was clear --
kathy