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87972 tn?1322664839

New guy and possible non-responder

Hello all;

I believe a quick introduction is in order: I
39 Responses
Avatar universal
Hi Bill,

You are what is known as a classic slow responder.  Traditional tx protocol states that you have only a small chance of SVR at this point, however, this assumes that you follow the standard protocol.

PLEASE DO NOT DO THIS.  If you are tolerating tx this well and have this much response you have two choices. Stay on this dosage and see if you eventually clear, and then extend tx for at least 36 weeks after the 1st undetectable test.

The other alternative would be to change tx right now.  Either increase the dosage of Peg, or switch to daily Infergen.  THis would be my preference.

Do not let them take you off of tx.  The first chance is your best and from all signs, if you attack this thing aggressively, you should be able to beat it.

I am not a Dr, just an HCV sufferer who has been down this road and did not have anybody to tell me these things.  Thus I have become a nonresponder and have gone through 3 rounds of tx so far, and am getting ready to start a fourth.  YOU DO NOT WANT TO GO DOWN THIS ROAD.

Call Dr Ben Cecil in Louisville.  He will point you in the right direction.  His phone number can be found on his web site which is www.hepatitisdoctor.com.

Best to you and good luck.  Let me know if I can answer any other questions.
Avatar universal
Way to tell it Scott.  That was right on.

Avatar universal
maybe I missed something in that reading, but their findings indicated this: "...these T-cell responses were focused on much fewer peptides than in HCV-recovered patients and did not differ from responses detected in unexposed individuals."  Did I misintrepret when reading that the non exposed individuals had an undistinguishable response from the sexual partners of HCV infected response? I am not sure how this plays into your ongoing concerns.  Which section should I focus on?
Avatar universal
<u>Bill1954</u> - don't get hung up on not hitting the the 2-log mark. For someone with the amount over liver damage that you have (Stage 3-4) it's not all that unusual for viral clearance to take longer. As others have already stated, the important thing in this regard is that you are showing to be a responder now. You didn't state what Grade number (i.e. 1,2,3 or 4) of inflammation your biopsy showed. A higher level of inflammation can be a sign of possible progression and therfore and even harder nut-to-crack when it comes to viral clearance. I would not advise dropping your current tx, since you are continuing to respond with it. What you may want to do is ask to have your riba dosage upped from from 1,200 to 1,400, at least until your PCR shows clear. And whether or not they go along with that you should get a PCR done every 4 weeks (i.e. - week 16, week 20, etc) until you do show clear. As long as your viral level continues it's downward trend, there is no need nor call for you to end your current type of therapy. Talk to your doctor about the possibility of extending your tx, both for the opportunity to try for SVR as well as the chance for halting or reversing of histological progression. Those really are the keys right now.

<u>willing</u> - thanks for posting the shenoy info. I went looking for it online and found the Journal of Infectious Diseases wanting me to subscribe to be able to view it. Do you have it somewhere else? If not, can you summarize what they did and any conclusions?

Avatar universal
This is a very good thread...the kind we all love to read!  It's been awhile since we have generated such a thought provoking group of issues, and data.  I think we all need to visit the board more often!  Keeps the old gray matter crackling away.

87972 tn?1322664839
Hi there, everyone;

87972 tn?1322664839
One note I forgot to mention - I was diagnosed with Type 2 diabetes August '03. My glucose is currently under control w/oral anti-diabetic meds, I understand the issues with Tx and obesity/glucose intolorance. I just didn't feel I had the luxury of time to postpone treatment while I trimmed down.

Thanks again,

Avatar universal
I had a 1.89 log drop, so decided to continue for 72 wks at the original doses. had a 5 and 12 wk post tx, negative PCR. Of course there is still a 17% relapse rate until hte 6 mo negative, so I will let you know next week, how well that protocol worked for me.
Avatar universal
a good year 1954..the relative importance of attitude vs probability is a pretty interesting topic.  The available data is pretty compelling - ignoring it doesn't seem very wise. I'd suggest keeping up the strong attitude but adjusting expectations to match the evidence: at stage 3/4 tx is worth doing even if success is unlikely, unlikely never means impossible, and 1.7 rounds out to 2. You might want to look at <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12939591&dopt=Abstract">Davis, et al,2003</a>, which is probably the main pillar of the 12-week rule, and similar more recent studies so you're prepared for any "it's not worth continuing" arguments from your Dr. and/or ins. co.
Avatar universal
DD: things are good. I get the occasional wave of joint aches and low energy but then it blows over. Anytime I’m tempted to complain I just think back to tx and smile instead - I’ll probably stay grateful about the end of  tx to the end of my days! Hope all is well with you and your post-tx aggravations are settling down.
I must admit I was skeptical about your low-level infection concerns, but it does look like evidence is accumulating for infection that differs from the expected pattern (detectable virus-specific T-cells + ABs + virus). However, as with cuteus, it wasn’t clear to me whether the observed T-cell response was to an actual HCV protein or could have been a response to a similar peptide from another virus. Anyway, it’s all very interesting - given that HCV  only replicates in us and chimps, which share around 99% of our genes, HCV does seems like the ultimate intimate enemy – it knows *exactly* where we live

Bill : below some data from a recent study (<a href=”http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15871137&query_hl=18”>Shenoy, et al 2005</a>) which might give you some ammo to argue with if your  Dr. suggests stopping. The authors critique a study by Drusano and others that argues for a flat 32 weeks of tx beyond undetectable. The patients all had to drop out early for the reasons shown, nevertheless, all got to SVR They had low initial VL and undetectable by 12 going for them and you’ve got a very low baseline VL.

<TABLE border ALIGN="center" rules="all" cellpadding="8">
<TR><TD align="left" valign="bottom">Age, years<SUP> </SUP><BR>
(HCV genotype)</TD><TD align="center" valign="bottom">Treatment</TD><TD align="center" valign="bottom">Initial<SUP> </SUP><BR>
viral load,<SUP> </SUP><BR>
million IU/mL</TD><TD align="center" valign="bottom">Duration<SUP> </SUP><BR>
of therapy,<SUP> </SUP><BR>
weeks</TD><TD align="center" valign="bottom">Adverse effects<SUP> </SUP><BR>
necessitating dose adjustment</TD></TR>
<TR><TD align="left" valign="top">39 (1a)</TD><TD align="left" valign="top">1.5 <IMG SRC="/ucp-entities/mu.gif" BORDER="0" ALT="&mu;" ALIGN="BASELINE">g/kg/week of pegylated IFN + 1200 mg daily of ribavirin</TD><TD align="center" valign="top">0.2</TD><TD align="center" valign="top">10</TD><TD align="left" valign="top">Psychosis: cessation of treatment</TD></TR>
<TR><TD align="left" valign="top">52 (1a)</TD><TD align="left" valign="top">1.25 <IMG SRC="/ucp-entities/mu.gif" BORDER="0" ALT="&mu;" ALIGN="BASELINE">g/kg/week of pegylated IFN + 1400 mg daily of ribavirin</TD><TD align="center" valign="top">0.3</TD><TD align="center" valign="top">22</TD><TD align="left" valign="top">Increase in ALT and AST levels: intermittent cessation and eventual complete cessation of treatment</TD></TR>
<TR><TD align="left" valign="top">46 (1a)</TD><TD align="left" valign="top">1.5 <IMG SRC="/ucp-entities/mu.gif" BORDER="0" ALT="&mu;" ALIGN="BASELINE">g/kg/week of pegylated IFN + 1400 mg daily of ribavirin</TD><TD align="center" valign="top">0.7</TD><TD align="center" valign="top">30</TD><TD align="left" valign="top">Psychosis: cessation of treatment</TD></TR>
<TR><TD align="left" valign="top">56 (1a)</TD><TD align="left" valign="top">1 <IMG SRC="/ucp-entities/mu.gif" BORDER="0" ALT="&mu;" ALIGN="BASELINE">g/kg/week of pegylated IFN + 1000 mg daily of ribavirin</TD><TD align="center" valign="top">1.9</TD><TD align="center" valign="top">24</TD><TD align="left" valign="top">Anemia: ribavirin reduced to 800 mg qd from 1000 mg qd, weeks 5<IMG SRC="/ucp-entities/ndash.gif" BORDER="0" ALT="&ndash;" ALIGN="BASELINE">19; depression and fatigue: cessation of treatment</TD></TR>
<TR><TD align="left" valign="top">47 (1b)</TD><TD align="left" valign="top">1.5 <IMG SRC="/ucp-entities/mu.gif" BORDER="0" ALT="&mu;" ALIGN="BASELINE">g/kg/week of pegylated IFN + 1200 mg daily of ribavirin</TD><TD align="center" valign="top">1.3</TD><TD align="center" valign="top">17</TD><TD align="left" valign="top">Neutropenia: dose of pegylated IFN reduced and discontinued for 3 weeks, recurrence of neutropenia on rechallenge</TD></TR>
Avatar universal
cuteus : my bad - I flubbed the html - here it is again <a html="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15871137&query_hl=24">Shenoy</a> and a reply by <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15871138&query_hl=24">Drusano</a>. 10 weeks does seem kind of a light sentence doesn't it? of course there is the minor inconvenience of becoming psychotic - but I'd  have had to think twice about it if someone had given me that choice. BTW, of the various comments on this thread I think yours seems the most encouraging to Bill. Good luck with your test and I think you're being a bit pessimistic about the 17% still to jump.

Ken - good to hear from you! Keeping a lookout for pink dragons on the next stool sounds pretty good - stay well. I'm going to wait till next Feb to test. Part of it is curiosity - can I tell whether I've relapsed? (my guess is no)- but most of it is plain fear. Being alive is just so damm good compared to tx I don't like to even drive near that clinic - you never know who might jump out and grab you.

tn - I'll try to post the whole text in the next message. It's basically anectodal(5 patient) evidence against the Drusano model that suggests length of treatment may not be the most important predictor of succes. Drusano's reply doesn't really take issue with this. Both sides agree more data is needed. (remember one of my main gripes with the Drusano paper was that not one of their patients had done more than 48 weeks).
Avatar universal
the link did not work for me, maybe its my puter?

a 1a with 10 wks of tx got svr? seems unreal!
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