viral load question

[shawna1968]

Hi everyone......I had posted a few weeks ago about my viral load being at O by my 3rd month of tx. At the 8th month my blood work came back as having a viral load of 245. Obviously, I freaked out being in my 9th month of tx now. Anyway, I went to another lab last week anf they just told me my bolld work was "Non-Detectable/below 615. I am so confused!! What does this mean? Is the 245 a lab error and now it's ok? What is the exact number that they can detect to? I hope this makes sense, I am soooo confused, is is working or not, the doctor's are too confusing!!

[wyntre9]

"Do you have a link to the thread where we discussed upping the doses, etc. I'll try and log on tomorrow and look."

I have a vague idea of where it might be.

I'll see if I can find it tomorrow.

Thanks much for the stats and the info.  2000 riba sounds like a lot of drugs and double dosing peg as well?

But something obviously worked in your situation.

[jmjm530]

My pre-tx viral load was around 1.5 million. The fist week I dosed normal Peg with 1200 ribavirin and then I switched doctors. My second doctor took a viral load test for week 1 and a decision was made to double-dose the peg and up the riba to 2000 mg/wk, which was basically my idea -- the riba part. Anyway, I ended up in the Emergency room from all that riba and had to actually go off riba for around a week. Meanwhile my week 1 viral load test came back and it was 16,000 IU/ml, almost a two log drop for week 1. So in hindsight, I probably didn't need the double-dosing or the xtra riba at all given my rapid response. I was non-detectible by week six and maybe could have been non-detectible earlier had I not stopped the riba. That I will never know. Maybe the extra meds helped, maybe hurt. Academic for me at this point. To your question, I consider myself a rapid responder given I was somewhere around 100 IU/ml at week 4 and non-detectible by sensitive test at week 6.

Do you have a link to the thread where we discussed upping the doses, etc. I'll try and log on tomrrow and look.

Be well,

-- Jim

[wyntre9]

"Fortunately, I did do some research at week 1 regarding more agressive treatment strategies and based on that actually changed my doctor a week later. I lucked out in that respect, but on the other hand, I reacted so fast to the drugs that it may not have made any difference who I treated with. Just so many variables."

Yeah, I remember you answered one of my questions a couple of weeks ago and suggested more aggressive tx, upping the riba, for example.

I'm at 1000 per day, pegasys 180 once per week and the Dr. just added twice monthly neupogen, 480.

Now that I realize my results aren't the best, I'd like to discuss upping the doses with the Dr.

Do you remeber what you suggested?  (I'm 1A, Stage 1)

And what do you mean, you reacted so fast to the drugs?  Were you an Early or Rapid Responder?

Can you tell me what you dosed at?

"then you hear stories -- like one from my nurse -- about a guy who treated for three weeks, then disappeared because he didn't like the side effects, then shows up a year later for a follow-up and he's non-detectible. Go figure.'

Amazing.

[jmjm530]

I think most of us learn as we go in this thing. No doubt that's part of the reason some get it right on the second go-around, but of course much better to get it right the first time. I was one of the ones that didn't know what "tx" or "sfx" meant when I first logged on here around week 2-3 of treatment. Fortunately, I did do some research at week 1 regarding more agressive treatment strategies and based on that actually changed my doctor a week later. I lucked out in that respect, but on the other hand, I reacted so fast to the drugs that it may not have made any difference who I treated with. Just so many variables. You've got people 100 per cent compliant for 48 weeks and relapse and then you hear stories -- like one from my nurse -- about a guy who treated for three weeks, then disappeared because he didn't like the side effects, then shows up a year later for a follow-up and he's non-detectible. Go figure.

-- Jim

[wyntre9]

"If you want to learn more about mainteance, you might google the "Win R" study which I believe deals with it."

Ok.  Thanks.  Will do.  I haveta educate myself more about the issue.  Feels like I've gone into TX with blinders on and am groping my way through as things unfold.

But at least I have full confidence in my Dr. (now)

When I think back to my reason for starting so soon after diagnosis (I asked him why I needed to start tx now instead of waiting he asked me how long I wanted to live.  that really got my attention!)  I think I made the right choice to give it a try.

BTW - I checked out that Powerpoint link about TX recommendations broken down by response rates and genotype.

great info.

[wyntre9]

Do you know if tx, even without full SVR at the end (of the first try) is, at least, beneficial to the liver?

Does it reverse damage, buy you more time, improve the liver's overall health?

In other words, if it turns out one didn't achieve SVR, is it worth the time and effort to have treated at all?

What do you think?

[jmjm530]

From what I've read, treatment can often stop or regress liver damage. How long that lasts I believe is still under investigation. So, yes, a case can be made for continuing treatment even against diminishing odds for the sole purpose of improving liver histology. In a way, that's the concept behind mainteance therapy where they give you low doses of peg, not to kill off all the virus but to hopefully improve liver health. The question then becomes when is it advisable to treat for liver histology alone as opposed to SVR? Another one of those questions where you have to weigh the risks of more exposure to the treatment drugs to the risks of liver damage progressing. Obviously, the more liver damage you have, the more things tilt toward treating for reasons of improving histology. Still, with newer therapies looking promising, it's not always 100 per cent clear cut, what is the best course. For that reason, mainteance therapy is controversial within the medical profession, at least it was a year ago when I was more up to date on the literature. If you want to learn more about mainteance, you might google the "Win R" study which I believe deals with it.

-- Jim

[jmjm530]

btw when you addressed the post to "doctors" I'm assuming that was because you're talking about doctors. As you probably know, there is only one doctor that posts here, and it's not me.

-- Jim

[jmjm530]

If your first result was indeed 245, then the second doctor at Cedar Sinai made a mistake giving you a test that is only sensitive to 615 IU/ml. If indeed that is what happened. like I suggested, get your own copies of all the tests to confirm all this and then review with whichever doctor you trust or feel comfortable with. At the same time, ask for a more sensitive test like the one I suggested above. As to your question, yes, it's possible for the viral load to go up during treatment and it's called a "viral breakthrough" but I wouldn't rush to judgment until you find out exactly what is going on.

[shawna1968]

I know I am a little unclear, I am sorry.  It is all very confusing to me...My Liver specialist, (the top guy at UCLA) is my liver doctor, he is where I got the 245 result.  I then a week later went to another liver specialist at Ceders-Sinai and he's the one who gave me the non-detectable/below 615.  How can these tests be so off? does it make any sense to have a )vl and then go up while on tx? especially I am 9 months into 12 month treatment? After all the hell of being on tx and for it not to work now? does this make  sense?

[jmjm530]

Assuming what you say is accurate, and your doctor ordered all the tests mentioned -- you might want to consult with another doctor as well. Preferably a hepatologist, who are liver specialists. It makes no sense that after testing 245 IU/ml that a doctor would order a follow-up test with a sensitivity of only 615 IU/ml. Unless, there's some more to this story, your treatment care leaves something to be desired. You might simply ask him point blank why he ordered the last test as he did. I would.

-- Jim

[jmjm530]

Unfortunately, some of what you post is unclear because we don't know the sensitivity is of all your blood tests. Therefore the first thing you should do is get your own copy of all the tests and check what is their sensitivity. It should be written on the report, or you can post the exact wording and maybe someone can help you here. You should also ask your doctor what the sensitivity of each test was cause after all that is what he is getting paid for.

That said, having a viral load of "245" at the eighth month is not a good sign. The question is, was it a false positive or not? Again, no way of knowing because your most recent test that showed non-detectible below 615 is not very sensitive, i.e you can be non-detectible to 615 IU/ml and still have 245 IU/ml of virus. Or, you could have no virus. Again, impossible to tell given the test you took.

My suggestion is while you are discussing the previous test results with your doctor and getting your own copies, is to have another viral load test but a very sensitive one. A good one to take the "Heptimax" test from Quest Diagnostics. It is sensitive down to 5 IU/ml.

All the best,

-- Jim