24 weeks or 48? Genotype A, RVR

My apologies if there is another forum that has addressed this.

I am curently approaching 24 weeks of treatment. A bit of disagreement is arising between my imunologist, and my Hep C nurse about whether or not we should discontinue treatment at this point.

I am Genotype 1A. My case is a little unusual in that my infection resulted from a home invasion / stabbing incident. Accordingly, we were able to take a baseline test immediately, which confirmed I was not Hep C prior to this event. About a month later, my liver enzyzme count started going through the roof. It is interesting how a tiny amount of blood contact can result in Hep C.

I am one of those odd people who then actually suffered from acute Hep C. My HLA rose to in excess of 900. I actually think this was a good thing to experience, as I was unable to even watch TV in this state. I do not want to die this mindless way, and will do anything to elimiante this virus.

After waiting a few months we started monotherapy with Pegasys. I didn't have many symptoms at all with the monotherapy treatment. I was informed at the outset that my odds of success were as high as 90%, due to the early treatment in acute stage. However, after 3 months I did not respond sufficiently to continue.

One month later, we started Pegintron and Ribarvirin. What a shock, I expected few symptoms again, not the case at all! First injection took me up over 40c. Various symptoms since (weight loss of 50 pounds, hair loss started recently, tired, and very irratible). I have been able to work, but it is very hard at times. The great news, after 4 weeks I tested undetectable, so I am RVR.

For anyone interested, an observation of mine from this is combination therapy has much worse side affects than monotherapy (but of course, is more effective). It seems to us that the injections are causing all the problems, but the pills seem to somehow magnify the impact of that injection (at least in me). Either this, or simply Pegintron has worse side affects than Pegasys.

Here's my question. My Hep C nurse would prefer we spare me the side effects by stopping treatment at 24 weeks. Some evidence suggests for RVR Genotype 1A this is now the preferred route. But on the other hand, the odds are still a little higher if we stick out the 48 weeks. Further, I failed once before one of these "90% odds" tests. Accordingly, my imunologist would prefer we stick out the full 48 weeks.

I dislike the symptoms enroumosly, but fear that if I stopped at 24, and did not clear, if would be very hard to recommence a full 48 week treatment (due to body resistance to interferon resulting in the same terrible symptoms I experienced after the first injection). I am leaning towards just sticking it out for the 48 weeks, at least that way, if I relapse, we will have tried everything. On the other hand, it would seem a shame to put my body through an additional 24 weeks of this treatment if I have already cleared sufficiently to be SVR.

[moahunter]

Whoops, that should read ALT went to 900, not HLA :-)

[zazza]

What was your baseline viral load? To consider shortened treatment if genotype 1 and RVR, you should not have a baseline viral load above 400'000 IU/ml.

Are you still considered an acute? Recommendations might differ then, that I do not know.

[moahunter]

Basleine viral load was very low, around 30,000 from memory.

I was not acute when combination treatment started, as 6 months had past (i.e. I was chronic per how it is defined). This is because the doctors waited a little to see if would clear naturally (because of the strong reaction I had to the virus) before starting me on monotherapy, which then lasted 3 months.

Another thought I had was to carry on treatment, but perhaps lower the maximun dosage post 6 months (given that I am now below 75kg). I just slept most of this morning, as is commonly the case for me on Saturdays and Sundays, I am not enjoying weekends much at the moment, which is hard on my family also. The drug is hammering me for a few days after I take it (I improve later in the week, but I am working then).

[ala carte]

Hi.  I was 1a and tx-ed for 24 weeks.  I finished on 6/16/06 and just got my one year post pcr--und per heptimax (<5 IU).  Needless to say, I'm pretty happy.  But this is a risky business and I was willing to take the risk.  Some thoughts on your situation:  Are you a man or a woman?  I presume, because you started txing as an acute, you have mild to no liver damage?  Did you have a biopsy before you started?  And, I gather you've been on interferon now for 9 months, and 6 months on the riba?  Has your doctor figured this into his/her recommendation?  I presume you had a pcr at 3 months, which showed you weren't responding to the monotherapy?  What was your viral load at that point?  What was the sensitivity of the pcr that showed you were und 4 wks after you started the riba?  I had a regular quest test at 4 weeks--the sensitivity was <50.  If yours was less sensitive than that, I wouldn't rely on it.  I probably should have insisted on a more sensitive test, but the studies that show 24 wks may be enough used a <50, so that's what I went with.  I don't really have any answers for you, but I'm curious about the effect that the extended interferon might have on your success.  If you'd like to compare your stats w/mine, here's a link to my first post.  http://www.medhelp.org/forums/Hepatitis/messages/44218.html
Have you read the studies and tried to apply them to your situation?  I have some links to abstracts if that would be helpful.  Good luck in making your decision.  

[moahunter]

Some thoughts on your situation:  

1. Are you a man or a woman? Man

2.  I presume, because you started txing as an acute, you have mild to no liver damage?  Presumably so

3. Did you have a biopsy before you started?  The doctors had no reason to do this, as we knew I had just become infected from the negative baseline. This was used in Court (my assailant received 9 1/2 years in prision, unfortunatley published in all local media too:-).

4. And, I gather you've been on interferon now for 9 months, and 6 months on the riba? Yes, about 5 1/2 months with Riba.

5. Has your doctor figured this into his/her recommendation? Hopefully, she has been treating me from the outset. I have an imunologist rather than heptologist due to initial fears I could be HIV positive (I took combivar for a while), she discisses me with heptologists at the hospital though.

6.  I presume you had a pcr at 3 months, which showed you weren't responding to the monotherapy? Yes  

7. What was your viral load at that point? It droped from around 60,000 to 9,000 (from memory). Rose back up to 30,000 in the month following before started pegintron and Riba.

8.  What was the sensitivity of the pcr that showed you were und 4 wks after you started the riba?  <50. We have not done a pcr since as it stresses the laboratories (I am in Canada), and little reason to believe could have relapesed after rapid RVR.

From what I have read, most recent recommnedation is to stop at 24 weeks for 1A RVR. I understand about an 85-90% success rate at this time, versus 90-95% at 48 weeks. However, I am very cautious of stats and studies now, as the monotherapy is supposed to be 90% effective in acute patients, but it was not for me (we might in hindsight have been better off starting on the combination therapy).

[ala carte]

It's funny, the studies say that 24 weeks should only be attempted by lvl (less that <600,000 in some, <400,000 in others).  But strangely some people on this board w/very low vls have had trouble clearing.  You seem to fit nicely in the 24 wk profile--I'm guessing that you're not overweight at 75 kg, and I saw another post where you speak of your children, so I'm thinking you're in your 40s (or younger).  That said, I get the feeling you'd feel more comfortable if you went the full 48.  If that's accurate, that's what you should do.  The 24 wk option has to be taken w/a "no regrets" attitude.  I would think about the 15 months of interferon though.  Some on this board believe that it is responsible for some nasty post-treatment problems--for more info, see if you can find posts by double dose and magnum.  But, that said, there are several people here who were slow responders and are treating for 72 weeks.  Play it week to week and see how you feel.  

[moahunter]

That should read "fortnightly" not "bi weekly" I think. I would love to take interferon only once every 2 weeks, I can't imagine how much better it would be to have a good weekend every 2nd one.

[moahunter]

Thank you, that is very helpful. I wonder if the 1 month gap betwewen the 3 month's of Pegasys and commencement of Pegintron breaks up the analysis on 15 months (this break was to "shock" my system again)? I will check this out with my imunologist though, it is worth thinking about.

I am 35, and started at about 94kgs (now 73 kgs, but seems to have stabalized in last month, as long as I don't get another stomach bug!) I am 6 foot 2, so have always looked pretty skinny (like one of those AIDS patients in the movie Philadelphia now, I guess:-).

My Alt is very low at the moment (25), so I am pretty hopeful. An advantage of sticking it out though, is as you say, I will not regret later on if I do relapse. I would hate to start over again, and doubt new meds are going to be easier anytime soon (aside from bi weekly interferon, which would be nice), as will probably involve adding an extra drug (and more side effects) to the mix.

[ala carte]

I had originally missed the fact that you took a month's break from the interferon.  I was thinking that you might have an even better shot if you had gone straight through.  Another thought:  someone posted awhile back that a new study shows that dropping the riba a bit after you're und doesn't seem to affect your odds of svr.  I'll see if I can find it.  As you noted, it's the combo that does one in.  So perhaps you could consider that (with drs. ok, of course).  I don't seem to have many (if any) post-tx probs and I have no idea whether that's because I did less interferon than many, but maybe.  Who knows with this horrible stuff!

[moahunter]

Oddly enough, despite the horrible symptoms, I think this "horrible stuff" is a miracle. But that's me, always looking on the bright side - drives my wife nuts, she is a more depressive personality, I guess we even each other out.

It is a good thought though to consider dropping just the Riba first, perhaps even just down to say 4 pills a day and seeing what effect that has. Please do let me know if you find that study (there are so many out there!).

There is the option with Pegintron (unlike Pegasys) to drop the dosage also, but perhaps try the Riba first if we have a study to support this (after 6 months) - may make a lot of sense.

[ala carte]

Grrr. Can't find the post, but I think this story references the study the poster discussed:
http://www.hivandhepatitis.com/hep_c/news/2007/012607_a.html

You have to copy and post the link in your browser--can't just click from this site.  It is a study involving pegasys rather than peg-intron and it seems a bit iffy, but maybe if you could get the complete study, you could analyze it.  Good luck.  It is awful to get this disease and I do feel that it's miraculous that I don't have it anymore!

[debnevada]

I'm also an acute but did not do monotherapy. I started combo therapy 16 weeks post infection and was UND at a week two PCR.  I take seven riba and 180 pegasys. I WANT to stop at 24 weeks but my hepatologist wants me to go to 48 if possible.  There are very few acutes on the board. I've only met one other and she does not post that much now.

Deb

[debnevada]

which is similar to geno 1

[moahunter]

Good luck Deb, week 2 PCR UND is very promising!

It was originally thought with me that 24 weeks of monotherapy would do the trick. I think the approach your doctor has taken to start on combination makes more sense though. I don't see how adding Riba could reduce odds of success in acute stage (although there is an old study that provides support for monotherapy).

On the other hand, I find it odd that your doctor would be reluctant on stopping at 24 weeks, as unlike me, you have not failed an earlier treatment. If 24 weeks of monotherapy is normally considered sufficient for SVR in acutes, I do not understand why 24 weeks of combo when you are RVR would not work. Maybe there is some other factor at play that your doctor is concerned about?

I am a bit of an oddity, in that I was originally treated as an acute, but having failed that, I was technically a chronic when my current treatment commenced. I am also an oddity in that I have experienced Pegasys and Pegintron. I think anyone who is diagnosed in acute stage would be crazy not to do treatment immediatley though, as there will never be a better chance of eliminating the virus, than before damage is done.

[moahunter]

Thank you, that is very encouraging. It seems that as an RVR, even a significant reduction in Riba may not make an impact. Provided I keep the total Riba over 60% for the entire course, this should be an even stronger chance for me.

I am leaning towards perhaps dropping 2 of my 6 pills come 6 months, and seeing if that makes life a bit more manageable.