I dont get it... any ideas?

[AngelaNicole]

ok, i was tested pos for geno 1 and was stage 3 inflamation and 2 scaring.  i went for 48 wk treatment on peg/ribo. my vl was over 700,000.  

after the first 3 months they tested me for vl and it dropped to 370,000

after the next 3 months they tested vl and it was 98,000

ater the next 3 months it was 1,070!!!

everyone was so excited and so was i... near undetectable...

the test at 48 weeks, completion - over 700,000!!!  the Dr. thought it was a mistake and assured me of that.  so they retested me, and vl was over 700,000.  i walked outta the dr's office in tears...  

they couldnt explain it... and the new dr's i have now in a different state dont know what happened because they couldnt get the charts.

has this happened to anyone else?

[nygirl7]

I think there was something very very wrong with the docs in Rochester because of course you can be tested and get your exact VL before you start because THAT is how you tell how you are doing.  

These docs - thank God they are better because ideally you should at LEAST have a test at week 4, 8 and 12 so you know exactly when you get to UND.  This will help you determine if you need to extend treatment or not..........things like that.

[AngelaNicole]

hi,  thank you all for your comments and good words of encouragment.

i was treated in Rochester, NY, i met the gastroentrologist one time before treatment started, then through all of treatment i saw a registered nurse, once before treatment, then after 3 months and again 3 months later, then three months and at the end, and when the vl was over 700,000 again they retested me and then i saw the gastro woman again.

i dont know what my actual vl was because they said that they stop counting after 700,000 so who knows what it was in the beginning or the end.

my care was terrible compaired to the Dr's that im seeing now... now im in Boston!  real Dr's and they care about their patients and follow them closely.  im seeing a gastro regularly and seeing the hepatologist every 6 months.  they say there is no point in going through the same treatment again being it didnt work the first time...  they are trying to hold off treatment until the studies are complete so they know exactly how to go about my treatment and follow me closely so if adjustments need to be made, they will be made.

yes, the vl numbers are 'correct' according to Rochester, NY...  

i had great insurance that paid for everything, maybe thats why they continued treatment...  the money and kick backs from the pharasutical companies ???

peg dosage was 5, and 3 ribo every 12 hrs.

all i can say is the Dr's in Boston are so different than any of the Dr's ive ever known before.

[newleaf09]

Assuming you meant weeks instead of months.  700,000 is not a high VL.  If you were responsive to the full dose of riba and peg, it should not have taken so long to clear and they should have stopped you if they couldn't clear you by 24.  Something's not right.  I'm curious what quantities of peg and riba they had you on.

At stage 2 fibrosis, you do have a little wiggle room and you should have had a little repair from having the virus knocked back for a while.  The protease inhibitors should be out in 2011.  They can make a dramatic difference for patients who aren't responsive enough to the peginterferon.

[copyman]

I agree with the others. Your Medical team should have stopped you at 24 weeks. Even though this extended treatment may have helped your liver it is still not standard protocol and benefit may not outweigh damage that can be done from interferon & ribavirin.
I would find a Hepatologist and see if you can wait for the new drugs coming out in the nexrt few years or see if you can get into a trial for non-responders.

Best of luck

[montanabln1]

i am very sorry to hear and think perhaps your docs should have kept you on thrapy for 72 weeks if you were only after 12 wees non detectale.
However, you still have the opportunity to rest a little and then egin aother round of therapy and this has proved to e in many cases very effective.
once you are ale and willing also financially find out aout re treatment and perhaps try to get onto some kind of project and if not make sure in the first 4 weeks of any new treatment you up your ria(copegus). G1 is not the easiest to deal with and am sure if you remain positive and keep your goal in mind it will work the second time.
Yes, it ***** this virus ut keep on trying and I know there are others who never succeeded the first time round
There is a silver sky some where waiting for you

[nygirl7]

I agree none of this makes any sense to me at all - I was thinking 3 x 4 = 12 weeks having but then reading'

after the first 3 months they tested me for vl and it dropped to 370,000
>>> this would week 12 VL

after the next 3 months they tested vl and it was 98,000
>>> this would be week 24

and a positive VL of 1,070 at week week 36? How can that all be so - there is no UND anywhere in the whole post.  What kind of doctor could do this? Is this all correct - did I get it right this time? I was thinking if she had meant weeks but it still is just bad medicine all around - as bad as my math is.

[Bill1954]

Hi there,

And welcome to the discussion group. Unfortunately, it appears you are part of a group of patients that are classified as ‘null responders’. This is different that those of us that do respond initially, but subsequently relapse after treatment. If you’re fairly comfortable with the viral loads you’ve provided, that is.

The real question is why your doctor allowed you to continue for the entire year. The guidelines for treatment suggest that a patient experience a ‘two log drop’ by the 12-week juncture (which for you would have been a viral load of 7,000 IU/mL), and certainly clear completely by the 24 week benchmark.

From here on out, I’d suggest consulting with a hepatologist; you are considered a hard-to-treat patient now, and the expertise of a liver expert are in order for you to get the most out of this.

With stage 3 fibrosis, I’d think you’ll want to watch this carefully; but proceed with caution as well. No point in treating again with the same stuff; something should change in the treatment. I would ask your doctor about the new protease inhibitor class drugs currently in late phase clinical trials; they’re expected to be used initially as an adjunct to the interferon/ribavirin. It also looks as though they’ll significantly increase the efficacy of treatment, as well as possibly reducing the duration of treatment.

Take care, and welcome again—

Bill

[Marc1955]

Unfortunately it sounds like you had very bad medical supervision. It is essential to the success of treatment that your viral load becomes undetectable by week 24. They should have terminated treatment sooner, or altered some other variable, when it became clear that you weren't on that course. Actually, they should have terminated your treatment after three months, since at a minimum, you need to achieve a two-log drop in viral load, which you did not. The goal is not to eradicate the virus by the end of treatment. It's to eradicate the virus early in treatment and then continue treatment to mop up any lingering virons.

You don't say much about where you are located or what kind of treatment your insurance covers. Before you start treatment again, please try to seek out a knowledgeable hepatologist that can assess your past treatment and advise you on the best course of action.

[nygirl7]

I'm very sorry for you bad news, it really just ***** and is not fair that it happens at all.  It would seem that you had a relapse after treatment.  Part of the job of treatment is to train our immune system to be able to keep on killing any virus that might be left, hiding somewhere, after the meds are removed.  In your case it doesn't seem to have worked.

I don't know how sensitive your tests were but obviously there was virus left someplace that didn't get killed off.

I am assuming that above you mean after 3 WEEKS the viral load was.....and then after another 3 weeks it was and then another 3 WEEKS it was still over 1,000.

That would mean at week 12 you were NOT undetectible.  This happened to me but I then treated for 72 weeks instead of 48 since when you are still detectible at week 12 it's a bad indicator of success.

I'm very sorry that this happened to you.  Next time you treat make sure you get a really good HEPTOLOGIST one who is up to date on the latest studies.  If you had had one this time he would have known that to extend would have been a good idea.