Very confused

I started tx in may and 4 weeks into treatment I got an undetected hcv result then at my 12 week mark I was detected at 1,500 well my dr did a test the end of october to see if yes I have it or no i dont and it came back positive so he told me he would like to take me off the pegasys and start the other tx which is one shot a day. Well I just had my lab work done the end of november and it shows undeteched HELP I am confused

[Bill1954]

You didn’t mention your Genotype; from other posts, I’m gathering that you are genotype 3? Were you scheduled for 6 months of treatment initially? If so, would this last test have been the End Of Treatment viral load test? How was your initial viral response; did you receive test results at 30, 60, or 90 days into treatment?

This is a very confusing situation, without many signposts for the doctors to follow. I see a couple of options; I’m sure there are others to mull over too:

If this was indeed the EOT viral load test, go ahead and complete this treatment; it should be about done anyway. Then test again at 30 day intervals, and see shat kind of results you get. Perhaps these have been ‘TMA blips’; low VL anomalies in nucleic acid testing.

Another option would be to change up your treatment drugs as the doctor suggests, and extend the existing treatment for _ weeks? This will take advantage of the existing compromised state of the disease, but also increase your exposure to the Tx drugs. Daily Infergen has a reputation for being a challenging drug; it generally comes with significant side effects.

Tough decisions to make; how are you tolerating the treatment so far? Are you requiring Procrit or Neupogen to maintain dose compliance? How are holding together financially and emotionally?  These questions also need to be taken into consideration to make this decision.

Hope fully, some others will chime in with there thoughts as well. Good luck to you going forward—

Bill

[CoWriter]

"then at my 12 week mark I was detected at 1,500 well my dr did a test the end of october to see if yes I have it or no i dont and it came back positive "
--------------------

On the last test you mention it was "positive".....not a number.  Did he do a qualitative test ?  (which would only tell you if it's positive or negative as compared to the quantitative test which would give you a number).

Because a "qualitative" test is very sensitive and would show positive even if the level of virus is very low.



"Well I just had my lab work done the end of november and it shows undeteched"
--------------------------

This sounds like a quantitative test.  You need to look at your results and see how sensitive the test they used is.  

Some tests can measure down to 600 while others can measure down to 10.  So I can see how a test can be "undetected" if it measures down to 600 and you still have some virus left....just less than 600.....in that case a qualitative test would show positive.

I know, it's confusing.  BTW, when exactly did you start treatment?

Co

[nygirl7]

OK I"m confused too but reading this it sounds like he is trying to say you had a breakthrough and he wants you to stop and wait and then treat again with hopefully more meds (not JUST changing from pegasys to pegintron?)

If you were UND at week 4 but then were again really detectible at week 12 that would be a viral breakthrough.  But 1500 is a very very low number and I would like to know what your 12 week number was.

I'm sorry it's very confusing.........but if you are really positive at this point then you would definitely need to regroup and attempt treatment again later.  Does your doctor have any input on adding one of the trial meds to your medications to see if you could get a boost that way?  Will he be adding more ribavirin to what you are doing now? Just switching over to another interferon seems like it wouldn't be enough to me.

Perhaps you should get a second opinion from anotehr hep doc.  If I had had a breakthrough at week 12 my doc would have taken me off treatment immediately knowing that it was not working so I am very confused why he would have kept you on the meds.

If something isn't working it isn't working........the time to regroup would have been then, not make you do an extra bunch of needless non-working meds?

[nygirl7]

pegasys and start the other tx which is one shot a day

Oh this is infergen...not a regular interferon like pegasys sorry I just reread that.  What were your biopsy results? Has he thought about a trial med perhaps? YOu did respond to the meds you just didn't stay responding...

Confusion sorry I go to fast while I'm at work! Still don't understand why he didnt stop you at week 12....

[Marcia2202]

You said your doctor wants to change from Pegasys to daily shots. Are the daily shots Infergen?

Sorry we are asking you all these questions in return. It is because we cannot really make much out of your question without having more facts. Could you please go back and check up on all the questions we asked and get back to us, so we can better try to help.

Wishing you all the best,

Marcia

[Deb_c430]

daily shots are infergen,  are you on maintenance? Infergen is for non responers, sort of the  last one, till some of the newer  protocols come through.  

Would also be interested in your geno type,   your biopsy result.  Confused also

Best wishes

Deb

[pjhep80]

fyi someone just posted a study here also that the daily infergen shots are pretty useless didnt they??

[nichole572]

Hi everyone yeah its infergen that he wanted to use. I am genotype 3 and I appreciate all of the feedback. I am confused myself I wasnt expecting to have a undeteched result. The test tests up to 615. His office mentioned doing a quantitive in about 4 weeks and I am waiting on there call back to find out which meds they waqnt me to take. I have responded pretty well with pegasys side efects werent bad. I am suffereing the after math and dealing with a lot of hair thinning and stuff like that but again could be worse I am not on anything right now and my dr never did a biopsy on my liver just started me on trx back in may. I have been off tx for about a month in a half. I am waiting for the dr to call me back regarding what were gonna do but I am thinking I want to swith dr's anyways.

[Deb_c430]

Geesh I hope not! I been on it for a year! Went UND at week 12.  I still have till June.

It is a harder treatment,   than peg, or intron, so not  many can finish it.

It was kind of back doored by pegs,   Only non responders are offered it.

I guess it a choice we have to make each of us. I know a couple who have svered on it, I hope to be the  next!

Who posted the infergen didn't work? Curious to see it.

[Marcia2202]

Thanks for giving more information.

There are two people on the forum who are on Infergen, but Deb_c is the one who has been on it for a long time, so I am sure she will be able to give you some good advice.

[copyman]

Hopefully you will stay UNdetectable but if not I would NOT do the daily infegrn shots, unless I had serious liver damage. Otherwise I would wait for the new drugs coming out or get into a study for relapsers. Good luck

[epiphiny]

I'm with copyman on this one.  As a G3 you would be better served trying to get on a PI trial IF you are in fact detectable.  

Also, I would push for getting a more sensitive quantitive PCR asap AND look for another doctor, preferably a specialist.  Btw, is your current Doc a Hepatologist or a GP?

[Deb_c430]

Infergen will work! It must! lol  If I have done all this for nought I will scream, one thing for sure I will never treat again on anything! I guess my liver had a good rest! If this doesn't work. Oh well, but I understand why so many feel the way they do, so hugs n stuff!

I want a good quality of life again!    I will not be in late 50's or 60 s0mething year old who is still treating, NO OFFENSE to anyone!  Because none was   NONE Intended at!

I want good years with my family,    a good quality of life.   I am not even sure how bad my liver is, I have never had a biopsy!

It is so confusing all of it,   to know what will work for your own body and chemistry,  we all are so different.  You just have to make a choice for yourself.

I was always afraid of trials,  the blindness of them, I don't mind being a guinea pig, I understand why they do it, but i don't want to be the one who never stood a chance!

[Emilio44]

I would be interested to know what riba dose you are on.  Without knowing any of the specifics, your breakthrough seems like a ribaviron issue to me. Good luck hope you remain UND. regards Emi

[Bill1954]

I think another opinion would be in order regardless of your doctors position. Try to get a more sensitive test when you do retest; the <615 sounds like it’s probably a bDNA test; while considered specific, I believe you want sensitivity at this point. Quest diagnostics offers a “Heptimax” test; this has a sensitivity to <5 IU/mL, and will provide more information. There are many other qualitative and quantitative tests available as well.

Without a biopsy, it’s hard to determine the extent of your liver damage, and therefore difficult to decide whether you even need to treat right now. If you don’t have significant damage, it might be wise to wait for a couple of years until the new polymerase inhibitor class drugs hit the market. They are in clinical trial right now, and hopefully offer better odds for SVR.

Best of luck to you, and let us know how things turn out.

Bill

[Rockerforlife]

Maybe your VL test at wk 12 was  a false positive?...Did you ask about this?

[nichole572]

Yeah my dr is a hepatologist and gastro dr I have been mad at him from the get go cuz I am a 30 yr old healthy women that has known she has had hep c since she turned 17. But I was in denial till now.My mom had it also but didnt find out till her 40's she was on the infergen the highest dose possible and is still neg to this day. My dr didnt do the biopsy so that is y I am most irritated. I want to change dr and maybe see if the new dr will do a biopsy and a sensitive quantitive test to see where I am at so that I know for sure where I am at. Errrrrrrrrrrrrrrrrrrrrrrrrrr the frustration . But I am thankful I have all of you to help much appreciated.

[FlGuy]

Since you were able to get to undetected rapidly (week4) I think that I'd give Peg-Interferon another try (with a few modifications) before launching into Infergen.  Might talk to the doc about switching Pegs, double-dosing, more frequent Peg and maybe adjustment to riba, as well.  To me, Infergen seems and extreme next step.  Did you miss any Peg or Riba shots or pills the first time around?

[pjhep80]

sorry everyone it was not infergen, it was maintenance therapy i was thinking about... i thought infergen was used for that

http://www.medhelp.org/posts/show/713173

[jmjm530]

if I'm reading this correctly, you were ndetectable week four, but the test used  was not very sensitive. so in a sense, your UND was not a very reliable one. Further testing, has borne that out.

At thepoint your doctor found u detectable, you should've been given the option of stopping treatment. Daily infergen is very strong stuff, and in my opinion was an irresponsible suggestion if it was the only option presented.

Things are further complicated, by the fact that you've not had a biopsy. With biopsy in hand, you would have better idea how aggressively to treat, or alternatively to stop treatment. What about your other markers? Such as ultrasound readings, size of spleen, platelet count etc. Has your doctor giving you an indication on liver damage based on clinical symptoms?

At this point,my suggestion is to get reevaluated by another hepatologist, who will have more objectivity, and hopefully a little bit more knowledge. Depending on what week you're in now, and your various blood tests, their dates and sensitivities, they may have you continue or alternatively they may give you the option to stop treatment to fight again with better odds and better drugs.

Meanwhile, I would ask -- actually I would demand -- the most sensitive viral load test you can get. Something like Heptimax by Quest Diagnostics which goes down to 5 IU/ml or one of LabCorp's tests that even goes down and lower. Further, if you do continue, I would have that test repeated monthly to make sure there are no viral breakthroughs.

Hope it all works out,

Jim

[comeagain]

jim she has been of meds for a month now.
nichole do a alat asat test soon as possible if you have normal values you might very well have pulled it of.
The alat value use to spike  when relapse mine went to the double when I relapsed, never been half that nr during 16 years of checking.

Cocksparrow has some very odd info about geno 3s that hasn´t been UND at EOT but got it later on and are now SVR there is always hope.

ca

[pjhep80]

'Cocksparrow has some very odd info about geno 3s that hasn´t been UND at EOT but got it later on and are now SVR there is always hope. '

ah thats bizarre happened to 2 people both did 1-2 years of tx and never 'cleared' but now they are both 'undetectable'

[pjhep80]

sorry, meant to post ' happened to 2 people that i know ' ... im not sure what genotype they were however

[nichole572]

Yes I did miss a few ribi doses inbetween the time frame of my two conflicting labs.I just talked to my dr office and they told me I can wait till after the holidays to start up again and they want me to do some more lab work before I see him and then to set up an appointment and he will decide once I see him. I am thinking also that I wont do the ingfergren but either get back on the pegasys or seak a 2nd opinion.

[jmjm530]

Misunderstood, I now assume "he would like to take me off the pegasys " means " He would not want to re-treat with Pegasys" ???

By all means get re-tested, but definitely have a biopsy before making a decision to treat again. If the biopsy does not show significant liver damage, I'd give serious consideration to waiting. I would also get another opinion from a liver specialist not affiliated with this doctor or his hospital.

-- Jim

[Bobby1952]

   Give her a break. If you read her post completely you will se that she was UND at the end of treatment which was November. She started in May. She may very well achieve SVR. I would get a Viral load test soon to see what is going on.

[nichole572]

Thanks everyone yeah I will have a retest the begining of january I am keeping my fingers crossed that it will be UND I just feel like a lil psyched out cuz my mind was set on being on treatment from may til november but we will see. I have a feeling the dr might put me back on interefron which I am hoping cuz I know what to expect.

[geterdone]

RUN don’t walk to the nearest EXIT! Get a new doctor! If you should get a new doctor and this may be the opportunity to do so because the present doctor does not want to see you until after the holidays, RIGHT! and as suggested get a Heptimax by Quest Diagnostics which goes down to 5 IU/ml or one of LabCorp's tests that even goes down to<2 either one will work at this point depending which provider is excepted by insurance. The test that goes down to 615 is outdated and unreliable as shown here. If you were UND at week 4 using the vl test down to 615 you were boarder line at that time and if you had a detection at 8 weeks later and then missed some doses in between which gave the virions another foot hold and put you above the threshold of the 615 low limit. But if you had gotten back on the ribavirin schedule and stayed on it it may be the reason why you had again attained the UND at week 31. Agree with Bobby 1952 you may very well SVR.

I would find a new doctor and get a new viral load test and go from there, Good Luck going forward.

Jasper

I am genotype 3
Started May
4 weeks UND June
12 weeks detected 1,500 July
26 weeks October breakthrough /// at what viral load?
31 week UND end of Nov
Yes I did miss a few ribi doses in between the time frame of my two conflicting labs

[geterdone]

If you really want to understand the differences in the different viral load test, look at the “Other related discussions” just below the Back To Forum button here at the bottom of the page. See HR, jim, mermeet link. It is a more indepth discussiion on the subject.

jasper