hep c and load counts

[brokeneck]

I have hep c type one -- treatment failed after 3.5 months of hell. anybody know what cronic means... or viral load counts whats high, low ..???? anyone awake

[GrandOak]

I hear you on being bummed when options seem to be few.  I had taken a look at the info on the drug but it was not clear if it was as effective as Riba, better, or worse with respect to stop viral replication.  I only seen that the Hgb effects were less tramatic.  NY and FL eh, I was hoping there might be something more my way.  Perhaps I'll give them a call and see if they are considering any trials out here at either the Mayo or UofM.

BTW, I'll trade you my 1A for your 2B ;-P

[FlGuy]

With the tx history you described Nick has certainly been through a lot.  The intent of tx is always to reduce vl to dundetectable levels.  Tha fact that it increased, and apparently with daily infergen, indicates that the virus is as tough as Nick.  There are other psoters here who have experience with infergen.  May be they have some insight to share.  Maybe the scheme is to get with a very experience hepatologist to map out some other approaches that could include, resting for a while, peginterferon maintennace, waiting for newer drugs, participating in upcoming drug trials.

[FlGuy]

Oops! Meant 48 weeks, not months.  The course for geno one would aim at 48 weeks.  Some docs, including the guy I consulted with, would look at that at a begiing point depending on response to the meds - when you become undetectable.  For example, he said for me (geno 3 relapser) if I am undetecatble at week 4, I go 48 weeks.  If not und at week 4, go 72.  But I'm sure that if I went as far as 24 without being undetectable, he'd probably say stop and go on peg maintenance to avoid futher liver involvement.  If you son stopped he may have given his liver some breathing room but probably needs to rewind from the beginning if he does tx again.  Did he have a pcr early on?

[NYgirl]

I'm a geno 1A and also a geno 1B.  Originally I was slated for the common 48 week treatment.  I do not believe a doctor would ever order anything otherwise for this genotype.

While geno 2 and 3 are presently treating for only 24 weeks.....they are finding that there are lots of relapses and perhaps in the future they will also be treating for 48 weeks.

If your son is a geno 1 and the doctor only slated him for 26 weeks of treatment...it makes no sense at all to me.  Or...did he have to stop because of some problems?

Because - all geno 1 are assigned to a 48 week course.  I hope that made sense cause to me it sounds like rambling.....it's hard sometimes on this stupid medication to get my thoughts out and today I have a very lazy brain!

[NYgirl]

The doctor must have stopped him because of the Riba problem...the internal bleeding.  If he was having problems with his bloodwork perhaps this time the doctor could monitor it and prescribe some medications to help offset the problems that arise in advance.

If he starts on a lower course of Riba dn continues it = that is better than starting higher and then CHANGING the dose midstream.  Dose REDUCTIONS are NOT advised at all.

But if he were to treat again it would definitely be a 48 week course of treatment.  That is what we have to do MINIMUM.

But now that I reread your letter I'm thinking he was just stopped early because of the problems.  It DEFINITELY GREATLY hurt his chances of SVR to stop so early.

I was slated for the 48 and now have been extended to 72 full weeks of treatment.

So you can see - it's much better to go LONG than stop early.

[NYgirl]

was this the second time he treated?  did he do the common interferon/riba BEFORE he was on Infergen?  From what I understand Infergen is much harder to tolerate than the regular Interferon.

Maybe that is why he only did 26 weeks.

Interferon is once a week - and infergen can be every day.

Did the docs give him the "easier" drug first and he was non-responsive to that?

[GrandOak]

It would seem that like Deb (nygirl) pointed out, many docs are now looking at 48 instead of 24 for G2 & 3.  Likewise, it seems more are also looking at 72 instead of 48 for G1's as well.

My suspicion would be that the longer the better, even if UND is achieved, because no test measures VL to 0 UND.  So the longer on meds, the more likely it would seem to be to eradicate any virus present which is below the threshold of detection.

[bobbyullc]

http://hepatitis-central.com/hcv/hepatitis/loadchart.html

as said cronic is persistant. like i am a cronic complainer.

[GrandOak]

As one who soon may find myself in the same boat as Nick, I can understand the dilema.

Being a stage 4 already, it seems my options are very limited.  I'm wondering if the large VL drop I seen at the onset of tx means the infergen might hold more promise should current tx prove to be a dismal failure in 4 wks time.

It would seem that the meds in trials right now show some promise in that they seem to greatly inhibit viral replication, and it is better understood how they are doing it.  Perhaps one day they can be used in place of Riba in the future to lessen the anemia sx alot of folks seem to experience.

[NYgirl]

You said mmmmmmhe treat with peg/interferon/riba and procit for the first year, and had to cut back on the the riba quite a few times.

It seems that maybe the problem is in the not being able to tolerate the Riba and having to cut down...now...Mr. Beagle Bailey our beloved friend in here has a problem with the Riba because he was born with a special type of anemia.  He has been looking in to an ALTERNATIVE medication that I just can't remember the name of right now - for people who can't take the ribavirin.

MAYBE this could be beneficial and could help.  I mean there is a big reason we take not only the IFN but also the Riba.  Changing/reducing dosages is one of the negative predictors for SVR.  So...........IF he could do the IFN with this new drug and not have to do ANY riba...maybe he could get to SVR because the meds wouldn't have to be reduced?

I am sure Beagle will be on to tell you what this med is called. My brain just blanked out but it's something I would totally look into.

I wish I could think of something else to help!

[Mister beagle bailey]

yes I'm here, the name of the new drug coming out is Viramidine but will be sold under the name Tribavirin by Valeant Co.  From what my Dr said it should hit the streets next year.  This drug is for anti-anemic riba replacement.  It is now used for children in hospitals for the flu at a lower dose of cause.  I have been trying to get into a trial using this drug but was told the trials are only for geno 1's. ????   I said WHAT!!!

Anyway, that's the name and it sounds very promising and would allow us to treat longer.

Beagle

[GrandOak]

Do you have info on the trial?

Being a Geno 1A Stage 4 who may be getting the big boot for current tx in a few weeks, I'm exploring what are my options.

I've read that like Ribavirin, this drug is currently in use for influenza and that they're researching how to derive an oral method of dosing it for use in HCV.

[Mister beagle bailey]

The site is:www.valeantco.com then click on tribavirin.  There are other sites, I'll look for them.  It would allow us to treat for 18 months if ned be.  They have a trial going in NY and the University of Miami but only for geno 1's.  I think that's one of the reasons I'm so down as I'm the wrong geno type for trials (2B).

Here is the # for Valeant Pharm  1-800-556-1937

Beagle

[FlGuy]

Chronic means that a disease persits without having been cured. In hcv, the virus continues to affect your liver.  Typically, hcv is a slow moving disease that, over time, will continue to damage your liver and may adversely affect other parts of your body and other sysyems of your body. Left untreated for a long enough time can put you in deep doo-doo. As a geno 1 you should have been on track to treat (tx) for at least 48 months.  It is most likely that you did not eradicate the virus. For viral loads, under a million is low, under 5 million is medium, over 5 million is high. Tx is tough, but can be made easier by an experienced doc who uses all the 'rescue' drugs available to minimize side effects (sx).