Anyone have information about maintanence dose of PEG after Tx.

[52TELE]

I have heard about and just seen references to a continuation of lower doses of INF after tx . Is this for those that dont clear to kind of keep their VL down?

[SJL]

I did Pegasys Maintainence therapy for almost 6 mths., and I still had terrible sides. I have been through 2 rounds of interferon,(pegintron&riba, and infergen & riba) a total of 100 weeks, responded and then relapsed.
The maintainence dose was 4.5 Pegasys and it did indeed lower my ast & alt. I am having another ultrasound on 8/8, and of course all labs done the week before. I am a 1B, grade 3, stage 4. Until then the verdict is out. My body just will not accept the interferons. I will keep you posted if you all would like.
Sandy

[Snookmiester]

Jim is correct, the studies you need to look into, are the HALT C trials.. Run a google. This was conducted by a few treatment centers in which they took patients with moderate damage, stage 3 and 4, and treated them for 48 weeks. After 48 weeks, they lowered the Peg by half, and cut out the riba.. The clinic I went to wanted me to do this, as they felt it was in my best interest being a geno 1a, and moderate damage. I was also told that I was most likely going to relapse and that this was my best option.. There theory is that the maintance dose, keeps the virus at bay. Revenire did this approach for 82 or 88 weeks I beleive. He did not obtain SVR, but did in fact see a one or two stage reversal in damage. The purpose of maintance dosing is not necessarily to increase the odds of SVR, but geared more towards improving liver histology..That is the exact explanation I recieved from my clinic, which took part in some of the imformation gathering for the study. They believe that the interferon WILL reverse damage, and if you look at the trial results, it does in fact have positive results for many.
As Jim stated, this was a big thing for me, as my treating Doc wanted me to go on maintance, and pretty much told me SVR was a long shot..That I shouldn't set my eye on SVR, as much as I should be focusing on improving liver histology.. That's why I went to Schiff. He told me that I didn't want to take anymore of the meds than I had to, and that my stats suggested the high probability of my clearing, and obtaining SVR.. I gambled, and went with his advice, and so far I am still clear.

[52TELE]

Thanks. What is the idea? Is it just keeping VL down to keep liver inflamation down? Do you know if it works?

[amirtracy]

hi there. hope you're doing well. question about the trials...i saw they're recruiting for vx-950 in miami now but it says you have to be treatment-naive. you mentioned off tx for 6 months? is that considered the same as tx-naive? just curious. again, hope you're doing well and thanks in advance.  tracy

[willows]

I just traveled 250 miles to see a doc at a clinic about maintenance, the idea is to keep down inflammation while waiting for better drugs, PI, etc.  While this doc said he would prescribe half dose Peg for me, he didn't think it was a good idea.  Says I have interferon resistant Hep C strain and maintenance could make it more resistant, which would be bad when new drugs come out.  My thinking is I want to keep my liver as long as possible and how could keeping the inflammation down be a bad thing?  The doc and I have VERY different view points.  Needless to say, I made a long trip and was pissed when I was done.  No maintenance for me right now, just more waiting.  I hate waiting.  Doc said PI will be available soon, he thinks three years, I think more like six years for non-responders.  Ah, well, wonderful world full of diverse opinions.  Take care.
Willow

[NYgirl]

amirtracy said is that considered the same as tx-naive?


No - treatment naive means NEVER having done treatment before, most of us aren't able to do trials because of it.

As my doctor said just today - with the trials it will not be EASIER because it appears the way it works best is ADDING the vertex ON with the riba and Interferon, but they are hoping it works BETTER.

(I was like look why don't I quit at 48 weeks and hope a drug comes out if I don't get SVR instead of doing 72 weeks LOL - he knows I wouldn't do that but...I do like to whine.)

[amirtracy]

hiya deb. thanks for the info. hope you're doing good. one thing i know- if anyone can go the distance and extend tx it's you. take care and have a great weekend!  tracy

[FlGuy]

My doc wanted to discuss maintenance after I relapsed but I don't want to consider it for a few reasons.  First, I responded to peg/riba (got to und by week 12) and if I were to go on maint., why not go with riba too in order to get to svr (with tx longer and stronger). Second, I'm interested in a PI trial (an investagation site is nearby) and for many trials a person has to have been off peg/riba for 6 months or so.  It may be a different motive for those who have not responded, are not able to treat in combo or who have relapsed on several attempts.

[FlGuy]

The motive was to reduce liver progress until next tx, of whatever type.  Correct on tx naive for vx right now.  The last time I spoke with them they guessed they'd get to relapsers late in 2006 or early 2007.  If I have some level of confidence (characteristics they would look for) I might wait.  But liver condition may exclude me anyway.  I have an appt with them in a few weeks that should give me an idea if I should wait or not.  At this point, for me, it's vx or plain old combo.  I might consider other PI's - depends on what's available.

[jmjm530]

I haven't been following the Halt-C trials all that closely but it appears they will end up answering a lot of questions we all have.

One thing I've read is that while treatment can often reduce fibrosis a stage or two, it's not necessarily durable. In other words, after the treatment drugs are stopped fibrosis may revert back to the previous level as opposed to with SVR where it often will keep getting better.

Wonder if anyone has any more knowledge or comments on this? I imagine the scenario would be different, however with mainteance because the drugs theoretically are never stopped, but I guess that is what Halt C is digging into.

-- Jim

[amirtracy]

Hey good luck to you w/ your next appt. your input here is greatly appreciated.

[amirtracy]

Just wanted to give a shoutout to my homey! lol.
also wanted to extend a sincere thank you for all of your humble opinions. i know you're not a doctor, you're far too eloquent for that, but you explain things better than mine and you've been extremely helpful to me pre-tx and during. hats off to you kind sir.

[Pdilly]

I second that one.   Jim has always been such a source of info and explains it so well to all of us that are really lost some times by all the different tests, terms etc.

[jmjm530]

Mainteance dose is another one of those contoversial subjects -- don't they all seem to be :) -- in the Hep C medical community. I believe the Halt-C trial is trying to come to a more definitive conclusion on this and maybe some more recent data has been released, don't know.

But as to how it's used -- yes, my understanding is that if it's used, then it's generally done post treatment for those that do not SVR and who for whatever reason aren't planning on treating again, and mostly for those with significant liver damage.

I suppose it could be used for other purposes but I haven't read anything about that except for a post by one of our members, snookmeister. If I remember correctly, he posted some time ago that his original treating doctor wanted him to continue on a mainteance dose post treatment as a form of extended treatment, but he ended up switching doctors and stuck to the 48 weeks. If he sees this post maybe he can verify and clarify.

-- Jim