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167895 tn?1189755825

My Doc Wants Me to Switch to Infergen

Just had my 12 week follow-up appointment yesterday and my doc said my VL had hit a plateau (only got as low as 240,000 from 2,910,000).  He suggests stopping the Peg-intron and starting with Infergen immediately.  Does anyone else have experience with this?  I really don't like the idea of daily injections, but if it will help I guess I'm willing.

Tim
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Avatar universal
Oh, I see you probably meant by "company", the company you work for? My guess is the reason they block tinyurl's is because their filters can't filter out the "bad" sites. Glad I don't work for a big company anymore :)
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Avatar universal
NY: *** - now the stupid company here has blocked all things with tinyurl's saying "hacking/proxy avoidance".  God pretty soon I won't be able to viewv ANYTHING.
--------------------------
Not sure what you mean, but I'm able to view "tinyurl's" posted here on my computer. Perhaps it's your system at home or at work where the problem lies. Just a thought.

-- Jim
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179856 tn?1333547362
**** - now the stupid company here has blocked all things with tinyurl's saying "hacking/proxy avoidance".  God pretty soon I won't be able to viewv ANYTHING.

I'm very glad I extended - in my case it seemed at the time the perfect solution.  I'll find out if it was tomorrow or Monday but judging by the enzymes...the chances look great.

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Avatar universal
It's silly. Mike
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233616 tn?1312787196
one thing I came across was a study on fat and absorption with riba. study varied fro, .75 to 1.46 better absorption with a fatty meal.

this got me to thinking:

ok, so part of the study had to do with lean muscle mass metabolism, and that fact that obesity seems to effect going UNG or SVR.

so, who here knows that fat circulation differs from normal leam muscle mass? Or that toxins are stored in the fat, not just the liver.

So here goes: Maybe the extended treatment works BECAUSE the little buggers can hide out in the fatty tissue for much longer than in the lean muscle mass and pounding bloodstream.

I mean, so you get down to UND, that still means in the BLOOD there are ten or less viral cells, or 50, depending on what test. that's not to say that you couldn't have them hiding out longer in a larger person.  google Ribavirin fat absorption and read up

sorry stiffneck, about the doc wanting you to change. I would hate it. question is, battle now or battle later I guess. You have to make the call. hard one.

hope that helps.  anybody comment on my theory????
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Avatar universal
If you open the pdf for Tuesday, and use the acrobat search facility (click on the binoculars) to look for "179" that abstract should turn up as the 3rd item found.

Nothwithstanding the high relapse rates reported in 179 I don't believe it provides data against the value of extending. The study only seems to show that the particular  "individualized duration" rule used was not successful, presumably because a lot of patients ended up doing less than 48 to their detriment. It's unfortunate that they don't actually report how many did abbreviated and how many did extended as this would make the results clearer.Abstracts 1321 and 1310 (see 10/8 comment above ) provide strong support for extending.
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223152 tn?1346978371
THanks.  I did manage to read the Berg Abstract but don't have it here, and I didn't see it in those links.  The abstract was in fact listed in the Tuesday aasld abstracts, but I just didnt' see it.  I will try later.  I am disappointed that the extended treatment was not more beneficial.  In fact, I don't really understand that and would like to read more.  Is the entire study out yet?  If it is could you send it to me?  And thanks for clarifying your graph!

Mikesimon has posted a  link to a new Clinical CAre Option today which may be valuable on who should retreat.  I am anxious to read that this evening.

frijole
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Avatar universal
zazza, frijole: here, by day,  are the aasld abstracts that contained the string "HCV" in the abstract text:
sat:  http://tinyurl.com/3dpr85
sun: http://tinyurl.com/2obe5p
mon: http://tinyurl.com/2nxls7
tue: http://tinyurl.com/3y9mzs
they'll only be there for a  day or so  so you may want to save them if you're planning to read through the pile. Berg's new study (abs 179) is scheduled for tues. As I read it their "individualized tx" arm looked at the week in which you became UND on a 615 bDNA test and multiplied this by 6. If this happened at week 8 one did the std. 48, if earlier  reduced time and if later extended time with the cutoff being 72 weeks for those that goto UND(615) at wks 9-12 (they only tested weekly up to 8). The big surprise for me was that the individualized tx (group B) seemed to be a big flop as judged by comparing the relative relapse rate, which I took to be % of EOT-UND who relapsed, with SOC duration (group A).  I first took this to be an indication that extended tx really doesn't help that much, but I now thing that's not the case since their table includes data on both extended tx and shortened.As noted in a previous post, a couple of other abstracts came out strongly on the benefits of extended. Anyway, am curious to hear any thoughts/opinions on this.

that vl graph I did from my tx is here:
http://tinyurl.com/yvqb75
The w 12 is plotted as 600 though it showed UND at that level The flattening is not as blatant nygirl's but clearly violates Cecil's Law (90% drop every week). Given what we now know it seems a pretty clear signal for extending...

nygirl : all the best possible wishes  - I think you did exactly the right thing

jim: my sympathies on that burger; I feel your pain. Control of the food supply is a big issue with me lately (rice and vegetables, AGAIN?). Saw an ad for the Wendy's baconator at lunch "beware, it can sense fear",  across the street and yes, I was afraid; I think it knew.
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223152 tn?1346978371
I think we need that study.  i will try to "procure" it.  WHenever I see a <anything, whether it be <50 of <615, my mind translates that to <2 or whatever the most sensitive test I can find.
kathy
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Avatar universal
Rebecca,

That's very sweet of you....., to say that you cried over my disappointment, it makes me feel very touched.   Susan
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Avatar universal
Thank you Susan.  I don't always keep up with the board but I was pretty much aware of what you've been through.  Actually, I cried last time you were taken out of the trial.  I did six months of Peg in 2004 and didn't clear by week 24.  Six months later I did do the daily infergen and stayed on it for 73 weeks, a bit over a year after clearing.  I was undetected five months post but never went back, just couldn't think about it or deal with it for a long, long while after finishing.  S'pose I'll know within a week or so.  I did my blood work last Friday.  Very best to you Susan.
Rebecca
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Avatar universal
I was on Infergen on 3 different tries.  The first time was when it first came out and back then, the thought was that the patient should do 'induction' therapy which is month #1 doing daily Infergen, followed by month's 2,3 and onward- with 3 times a week.  This was with the Ribavirin.  I did not clear after 24 weeks and was taken off.

The next time was in combination with Gamma Interferon (Actimmune), so I was on daily Infergen + once a week Gamma and Ribavirin.  I did not clear that time either.

The last time was when I was on double dose of Ribavirin, daily Infergen and Riba.  For me, for my body weight at the time, double dosing was 1600mg a day of Riba.  I did not clear.  I did 48 weeks.  

Please don't base your thoughts about whether to try Infergen, or not, on what happened in my case.  I've treated so many times and never cleared on anything, so it's not just a problem with any one particular drug.    On the last attempt that I was on with the Infergen, if was for 44 weeks before I was stopped.   Anyway, some people do clear with daily dosing of Infergen.

Susan
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Avatar universal
Susan, Did you ever become undetected on the infergen?  How long did you stay on it?  
NY/ I'll be thinking of you.  I went for my six month, six months late last Friday.  Think of me, okay?
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Avatar universal
Yea-Good for you, you go girl!!  I'm proud of you for finally taken this step in getting retested.  I am wishing you luck and prayers!    Susan
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179856 tn?1333547362
I absolutely agree with Berg if he is now saying tests must be sensitive.


Berg changed my entire course of treatment as everyone knows.  In my particular case not being UND at week 12 obviously I went on for the 72 weeks.  I've believed all along that for the critical tests you must have the most sensitive test possible to see if the results are truly viable or not.  I do not feel that an 8 week test would need be as sensitive as week 4, 12, 24 though.

"Willing -- you said your 12 week test was only <615.  Then what am I remembering you to have said about "flat lining" -- that your viral load stayed the same between 2 testings (like nygirl's did)?  I seem to even recall a graph you made"

Baseline 568,000
Week 4   411 (lookin good!)
Week 12  419 (not looking good!)
Week 24 UND
Week 46 UND <2 again

With the great log drop at week 4 things were awesome until I flatlined for all of those weeks between 4 and 24.  I'm glad I did the 72


By the way - leaving early to have my 8 month (well the 6 month technically at 8 months) PCR today.  Finally.  One way or the other - I figure it's time for me to find out if my UND has stuck and turned SVR or not.

wish me luck.
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Avatar universal
Yeah, I was also going: Will we have to treat forever now? 15x6=90 weeks! But then I saw this little sentence:

"In the latter group treatment duration was calculated by the time required to become for the first time HCV RNA negative as defined by bDNA assay (detection limit 615 IU/mL) multiplied by the factor 6."

That would make you and me clear by week 12, since we were below 615 IU/ml, and then we could do with just 72 weeks! Does this help any? I guess we still need to read that entire new Berg study to sort this one out.
Zazza
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223152 tn?1346978371
Did get into the abstracts finally. Thanks.   Now I would like to see the entire new Berg study.  I am somewhat perplexed about abstract 179.  Am I reading thia right -- it compares 48 weeks with 6x number of weeks to clear?  Seems a little out in left field to me.

The PCR test I am waiting for results on -- no , it is not the first post.  Last post-treatment test showed 3,700,000 copies - never did get the final with the IU correlation, but that should be about 1,400,000 IU/mL..  So this test is more for idle curiosity.
frijole
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Avatar universal
can i know how many money does one Peg-intron cost?
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Avatar universal
All the best luck with your "big 6". I'm assuming you were tested earlier and just being unduly (but quite understadably) nervous? In case you missed it, a new study correlates the 12 week 100% with SVR unless you're stage 4, and even then the correlation is pretty good.

As to the TMAs, cost is not as high as people think -- at least not what the insurance companies pay. If you have to pay yourself, always can negotiate. Won't go into all the reasons again why I think it makes sense -- at all points -- to do a sensitive test....

OK. That d*mn web site. Last night I couldn't. This morning it turned I was automatically still logged in and could.

Here's how to get to the abstracts:

After you're logged in, click on "abstracts" in left sidebar.  Then the words "abstract viewer" in the blue text under the green heading that says "abstract viewer". I believe it's the first sentence. (yes they make this difficult).

That takes you to the itinerary planner page. Now click on "Search" in the left sidebar. Now you're on the search page.

If you then just click on "Search" -- without filling in any fields you will get everything but the search filters are very good. For example, if you type in (under key words) Alinia you will get all the Alinia abstracts which actually you don't cause you have to type in "Nitazoxanide". LOL.

Let us know if you got IN and if you saw anything interesting. I haven't had time to do much looking yet.

-- Jim
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223152 tn?1346978371
Isn't it all economic?  I agree with Jim that it would be nice to have the most sensitive test all the time.  But I agree with Willing that the more expensive tests are totally unnecessary some of the time.  However, once you have tested to have a low virus count I think it is necessary to continue with sensitive testing throughout treatment - or the TMA quantitative which, I guess, I never had.   I had my internist order a PCR last week in my annual physical (jim - i am feeling doomed or depressed with the big 6-0 looming close).  He just looked back at the test the GI had ordered last because he had never ordered one and asked if that was the right one (it was the <2 QuantaSure).  I said yes, but, really, I could have had the cheaper test.

Also, like Jim, I have gotten trapped in the same AASLD loop.  I too have registered for the aasld but can't get into the abstracts.  

Willing -- you said your 12 week test was only <615.  Then what am I remembering you to have said about "flat lining" -- that your viral load stayed the same between 2 testings (like nygirl's did)?  I seem to even recall a graph you made.

Now that I have found this thread, and it is a good one, I hve it bookmarked.  THanks, willing.
frijole
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223152 tn?1346978371
Thoughts come to mind…
Really, willing, 6x the weeks before clearing?  That would really throw all of us into the mire. 6x20 = 120 weeks ?  The ramifications from the interferon would be too severe!  I must read this whole study by Berg.  If extended time is not the answer, what is?  I have harbored thoughts that 72 weeks for me would not have made any difference – that my strain of virus is too resilient. However, the Berg study – the 05 one – only indicated that extension would benefit those with VL under 6000 at week 12.  However, I think, clearly, that the extended treatment has benefited many here.  Cuteus? NYgirl -- Maybe – or perhaps they would have cleared at 48 anyway.  Eisbeen and Lovedbygod – the two who did over a year – yes, I think extension did do the job.  Fishdoc?  She did it by increasing Ribavirin.  Zazza and Mikesimon have pointed out that treatment must exceed the lifecycle of the longest liver cell – perhaps as long as 500 days – do I have that right?  That thought has merit.

I absolutely agree with Berg if he is now saying tests must be sensitive.  Tests to 50 are not adequate, except when lower boundries do not come into play.
frijole -- will add more later
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Avatar universal
nevermind. there seemed to be an overnight delay, but I got the intinerary planner working. just wondring, however, given that the site isn't the easiest to navigate -- how the hell will your average physician find anything? Most have the patience of a knat but that might be giving too much credit.

-- Jim
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Avatar universal
How about helping an Angus/Big Mac impaired fellow MH member, negotiate the AASLD site. Tried to log-on/register, etc, and the system seems to recognize me but I'm in some sort of loop and I can't get at the abstracts, whereever they are. Last time there was something I think called an "Abstract Planner" where you could selectively pull up different studies, etc. Couldn't find that either.

-- Jim
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Avatar universal
Willing: but I would be willing to  bet that (jelly-filled) doughnut again...
--------------------------------
Speaking of which, I'm a bit woozy now from falling off the wagon (food wagon that is). A stress-filled day and a wrong turn on the highway led me to one of my very infrequent visits to Burger King and I'm now an Angus  Burger and a Big Mac w/Cheeese and two large Fries the worse for wear, not to mention a trough size soda wash. Not sure I'll make a good argument from the lingering haze but if, for example someone did do monthly TMAs like myself, it would give them the opportunity (a positive result that is) to either re-evaluate treatment duration, dose, or even stop. Anyway, sounds like some pretty fancy testing you have in mind and I have no doubt that you will take the right tests for you next time treating. Well, think I better go for a bike ride or something and get the Angus out of the system.

-- Jim
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