Anybody out like me who can tell me their story

[ajw543]

I am looking for any of you out there who were Acute HCV.  I myself am Acute HCV and waiting right now to see if I clear this on my own.  I go back to the Dr. on April 23rd to discuss with him wanting to wait 3 months (that is 3 months from the first time he saw me) to see if I clear this.  I myself don’t want to wait 3 months.  So April 23rd will be 1-1/2 months since my last blood work.  I am hoping he will run my labs again and see if any of my numbers have changed.  I have my fingers crossed for a lower VL if he does the new blood work for me then.

But what my questions are for all of you are.  What was your GT, what was your VL?  And how long did you treat for if you did not clear this on your own.  I myself am GT 1a and have a VL of 265.  This is one reason I don’t want to wait to long to treat.  I mean with a VL of 265 I would think I have great odds of beating this if we start treatment soon enough.  I am pretty sure I was infected in the middle of January.  So I am already almost 3 months into this.  In my opinion I would think that is a long enough wait.  So I would just like to know is how your Dr. went about waiting it.  Did they decide to start you on TX right away?  Or did they make you wait and how long.

I have also decided that if he does run new blood work on me and my VL has stayed the same or went down I will then wait the rest of the time.  But if my VL has gone up at all I want to start treatment right away.  Not sure if this is a good decision on my part but I feel like if the VL is going up that is not a good sign.  So anybodies opinion and their own stories would be greatly appreciated.

[heatherg46172]

I tested pos for acute hcv 2 months ago I was told last week at the dr all my labs were back to normal and ths hcv viral count was 43 and should be gone they took my blood that day for another viral count they called me yesterday and said that the viral count was 1200 what does this mean im confused should i start treatment or wait my dr acts like he doesnt want to treat me he in fact said due to me being bi polar i would be hard to treat do u think i need a second opinion plz help

[adamben101]

I was initially diagnosed 1a with a load of 860 in Sep2009.  We decided to wait till Feb2010 and VL was 50,000.  I am now reviewing options for treatment.  As I live in Atlanta there are several clinical studies which peak my interest due to the great drugs they're testing.  To make you feel better, one or two months here or there should not affect outcome of treatment.  There are people on here who have gone 20-30 years without treatment and then cleared.  I am no recommending waiting that long.  Just saying take your time and decide what treatment is best for you.  Good luck!

[asad99799]

hi:hope u will be fine.i am possitive from hepatitis c,my (sgpt) gt was 376 45 days ago. but after the treatment of 45 days ( i take interferon 3 times per week and ribavirin 400mg twice daily)after 1 month my sgpt come to 20 which is normal (i am genotype 3) my other tests was also normal. doctor is hopeful that i can beat hepatitis c in treatment of 24 weeks.i hope u will understand it.

good luck


Asad

[asad99799]

hi:hope u will be fine.i am possitive from hepatitis c,my (sgpt) gt was 376 45 days ago. but after the treatment of 45 days ( i take interferon 3 times per week and ribavirin 400mg twice daily)after 1 month my sgpt come to 20 which is normal (i am genotype 3) my other tests was also normal. doctor is hopeful that i can beat hepatitis c in treatment of 24 weeks.i hope u will understand it.

good luck


Asad

[1dayatime626]

Hi, I just wanted to give u a thought.. I was diagnosed in dec and the docs told me also to wait to see if i clear the virus and because they are so busy They let to much time pass and then told me I was chronic..And decided to treat I was also low VL and my symptons were also so serve and I am a female and under 40. If I had of known I would have requested to start right away instead of waiting till march to start.... trial and error i guess and when they realized it was past the six month mark I was confused and still dont know the answer... I came into contact in June no symptons till oct which month did they consider the first month in the count down to the six month mark.   June or Oct?? But in knowning this after the serve symptons passed within 2 weeks  I ended up serverly sick again and they told me that was unusual and because of the the chances of clearing virus on own were that much better... But now with all the possibilities of could haves or mights I am on my my 13 week of treatment so far so good and i was UND by week 3 which is now added to the positive side of clearing, I like to call it hope :) Good luck to you and a piece of advice make sure u are on top of ur care and not just being told how they feel things should be for you... Ask questions, press for more imformation and dont walk away from appointments confused with any imformation you are given because when that happens you search the net and stress your self out.. Can sometimes make things worse....

[ajw543]

I wanted to thank you all for the comments on this.  It has helped me relize I am not just being a pain in the butt when I go back on April 23rd and demand that he run my labs again and if I still have a VL to start tx's.  I have not been happy at all with his last statement of wanting to wait 3 months.  That would put me into May before we start tx's if I need them.  And then I would still have to wait on the meds which I was told could take up to a month to get which would then put me into June.  I just hope he agrees with me and I don't have to go looking for a new Dr. and start all over.

[willing]

If you look at the series of studies from Kamal et al it looks like after the study showing no benefit from rbv they went on to do additional studies on acute tx,  all based on monotherapy, focusing on duration and start time after infection. Both of these factors did show an important effect and they don't seem to have gone back to re-investigate the rbv.

Agreed that it's a tough call - particularly as  VL has been documented to be very variable during that  stage.

[moahunter]

I remember searching the studies once before willing - that may be the one, although I don't really have the time to look deeply once again. As you point out it is very small, IMO so small that it can't really be taken that seriously. I am not sure it really takes into account diffeerent geno types either, or how it could given the size of it.

The whole mono idea for acutes, is just a bit counterintuitive, and the evidence supporting it really scant. I think that is why, at least in this city, it is not followed anymore. I remember when I started mono, even at that time the doctors were uncertain if it was the best idea. I was also told after I failed on mono, that another acute in this city, had exactly the same experience as me, failing mono, then doing combo (he went on to SVR).

I do agree though that the window is not that large. Acute treatment is very tough on doctors, for on the one hand, they do not want to treat if there are indications a person might clear naturally (why put someone through it, if there is no need, and it seems that for many, there is no need, especially if symptoms indicate an immune response to the virus). But on the other hand, the window will close soon, and unless another medine comes along very soon that can replicate the high odds for acutes in chronics (this is very quesitonable, at least for geno 1's), there will not be a better opportunity to treat.

I expect AJW543 should be treating within the month, but I do not know what the doctors are seeing or thinking, with respect to the odds of AJW543 individually clearing without treatment.

[willing]

not to cause alarm,  but the most important point from that summary of tx recommendations is probably that if infection occurred in mid-Jan, the widow for the optimal time to start tx is rapidly closing. SVR rates were down to 76% for those starting 20 weeks post vs 95% for those starting at 8 weeks. See:
http://www.ncbi.nlm.nih.gov/pubmed/16530503

As far as I can tell the study that supports the rbv-optional recommendation is
http://www.ncbi.nlm.nih.gov/pubmed/15185314
which concluded:
"According to our findings, the addition of ribavirin to pegylated interferon therapy did not provide a significant increase in the SVR rate."

Not sure whether this is the one you are referring to (it is in fact fairly small, n= 20 )  but I couldn't find anything more recent contradicting it. Still, if in doubt, and particularly if starting later, I'd  also go with adding rbv.

[moahunter]

All I know willing - is that my doctor told me that in the same circumnstances again, they would have gone straight to combo therapy with me, and that is the protocol in Canada now. I think the whole mono only thing is based on a tiny study of drug users in Europe some time ago, and there have been a bunch of studies that have quoted it.. Even the articles referred to in the one you post, seem to go back some years with respect to references, which makes me suspicious.

It is just not worth doing mono from my experience, I ended up doing 60 weeks of interferon because of that mistake, and I don't recommend it for anyone else. If someone is not going to clear, just do combo straight away - kill the virus while you can.

[Sharon79]

Hi!

All the best for you!

I´m just wondering how your Doc. knew that this is an acute infection? When were you diagnozed eg. had positive antibody test? How do you know you would have ´been infected in January?

I´m waiting for my test results and thinking that if I have an acute infection I myself would like to treat asap. But this is just me thinking this from my point of view.

Best of luck what ever you decide to do!

[willing]

the link I posted is a 2007 survey published last year by JAMA; we've argued in the past about what constitutes "prevailing view" but I think articles like this which survey current data come close to defining the current "standard of care" among physicians.

The review introduces no new data but points to other studies, including
http://www.ncbi.nlm.nih.gov/pubmed/16628640
which was published in 2006 out of Harvard med  school with Dr. Afdhal, often cited as an expert around here, as co-author.

If there's more recent data contradicting the above please post it, but these results seem to be among the best information on treating acute infection currently available. I haven't looked at what studies support the statement in Scott/Gretch about "the important point that ribavirin is apparently not required for optimal responses during acute infection". However it's worth noting that, though it's a bit counterintuitive,  more/longer soc doesn't always yield better outcome. For g2/g3s it's been shown repeatedly, most recently in
http://www.ncbi.nlm.nih.gov/pubmed/17894303
that going over 800mg rbv or extending past 24 weeks doesn't make much, if any, difference in  overall svr odds (or drs wouldn't make that genotype  distinction in tx duration/dosage).

BTW, the follow up letters to that  Kamal article in Hepatology look like some of the dog-fights that break out around here ( a german group led by Manns was being critical of the Egyptian/US study that published the study ). A sample from their reply:

"Competition between groups is healthy but we consider this a series of unprecedented attacks by an established leading European Investigator on an Egyptian/US consortium doing very important, validated and meaningful studies."

[moahunter]

I am not at all sure that this study, is accurate or up to date. In particular, monothearpy is IMO not worthwhile. It did not work for me, and is just not logical (i.e. how could combo therapy be worse)? My understanding is that the whole mono idea came about because of a small study in Eurpoe or similar.

As to optimal time to treat, I think doctors like to look at the response of infection, and measure based on that. With me, because I had the initial peak of high Alt, then a reasonably quick decline, it was thought that my chance of clearing naturally was quite high. But this didn't turn out to be the case.

Interesting stuff, but unfortunately, it is not possible to run an Acute study, unless we can find some guniea pigs willing to be infected with Hep C for the purpose of science. In saying that, I would hope data is being tracked on us guys and girls, so that better protocols can be formed.

[willing]

If you haven't already seen this you might want to take a look at this recent jama summary of treatment recommendations:

http://jama.ama-assn.org/cgi/content/full/297/7/724

in particular Figure 1,  the discussion on acute and the references cited there (Kamal et al). Though VL is known to fluctuate dramatically over the initial months, optimal time to start tx has been determined as 8-12 weeks after infection. If your Dr. is not on board with these recommendations it's probably wise to get a 2nd opinion.

[moahunter]

I was frustrated waiting, like you appear to be, as you "could" be doing something.. I just wanted to get on with treatment and to clear it. The current protocol seems to be to wait though - given that there is a chance of clearing on your own. I really don't know if that protocol is right or wrong, and whether the benefits of starting a month or 2 earlier outweights the cost, if it turns out that treatment might not be needed. Especially for 1As like us, who are a bit hard to clear.

[jmjm530]

I posted the link because I believe previously you posted a 20% spontaneous clearance rate that was somewhat genotype dependent. This review of clearance studies suggest a 40% spontaneous clearance rate for females which is not genotype dependent, i.e. you will not be penalized for being genotype 1. In any event, I cannot emphasize the importance of seeking out a hepatologist, especially if you treat, who will tend to be more up to date in acute treatment protocols.

-- Jim

[ajw543]

Yes I know I have a better chace to clear with tx durring the acute phase being GT1a then if it goes chronic.  That is way I am not thrilled with my doctor wanting to wait 3 months.  That is why I am hoping he will meet me half way and do my labs again when I see him on April 23rd and if my VL is going up to go ahead and start me on tx.  I also understand the GT 1 is not as likely to spontaneously clear as 2 and 3 but there is still a chance it might just not as high as the other two.

[willing]

not to belabor the obvious, but if you've already investigated extensively, you're well aware of the difference in outcome prospects for treatment during acute stage vs treatment after a G1a infection goes chronic. If spontaneous clearance is in doubt, a preemptive strike is  likely the wise move. Good luck!

[ajw543]

So it might be a good thing that my ALT was so high?

[moahunter]

Just posted that after yours!  Yes, they thought that "reacting" to the virus was a good thing, but that the spike I had after the Alt came down was a very bad sign.

[moahunter]

sorry - just realized, not sure if you have elevated ALT:-) My VL was not tracked this closely during the acute stage, I had PCR's before monotherapy, and then combnation therapy. Whatever you do, good luck!

[ajw543]

Thank you so much for the link.  I have already read that and many many more sites.   The thing that gives me hope from doing all the reading is that most have said under 40 females who go to show severe symptoms are more like to clear on their own.  They say that showing such severe symptoms usually show a robust immune system.  And that description is me all the way.  I am a female who is under 40 and had really really bad acute symptoms.  So bad I took myself to the ER.  So this gives me hope but I am trying so hard not to get my hopes up to high.  I don’t want to be devastated if I don’t clear it.  So I just keep reminding myself that the odds are not in my favor.  So instead what I have been focusing on is when is the best time to start treatment if I need for a better chance at SVR.  And right now I am so not thrilled with the doctor wanting to wait 3 months since my last blood work don on March 11th.  Maybe he has good reason for this and I ma just being a pain in the butt.  But I don’t tend to think I will clear this all though I would love to be one of those that do.  So I just want to make sure that we are starting treatment soon enough during the acute phase.


And Moahunter are you saying that they thought because your ALT was so high that was a indication of maybe clearing on your own?  My ALT was 2895 and down to 510 on week later.  Have not had anymore labs since then.

[moahunter]

I know with me, we waited and watched the initial symptoms to see if I would clear naturally. There was some indications that I might, as my Alt went over 900. It started to decline rapidly, but then, just before it dipped down below about 100, it spiked. That spike, I was told, was a pretty clear indication that I would not clear.

Hopefully by about month 4 there should be a clear indication as to whether you will clear or not. If not, my view is that it is best to start combinations thearapy right away, as I know mono-therapy did not work for me (despite some old studies that suggest it might).

Good luck - hope you clear naturally, but if not, I think it is worth trying to kill it right away, as you may never get a better opportunity, hopefully before any real damage sets in, beyond the little you might be experiencing now per your elevated Alt.

[jmjm530]

A recent retrospective study suggests as a female you have around a 40% chance of clearing the virus naturally.

Because recognized acute cases are rarely seen, my suggestion is to consult with a hepatologist (liver specialist) in a large city hospital setting. As opposed to a gastroenterologist of family doctor, a hepatologist would tend to have the most experience and be the most up-to-date with acute treatment protocols. Sounds like you still have time to find the right medical team and still remain within the acute window. Certainly, don't linger, but also don't rush into something until you have the right information from the right medical team.

-- Jim