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Avatar universal

Is shorter treatment possible in geno 1's

I have a question that I haven't heard anybody comment on.  Has any geno 1's that have gone undetected at week 4 stop tx early and remained undetectable.  I'm considering tx and the thought of 48 weeks of tx just doesn't seem possible.  I read this article

http://www.hivandhepatitis.com/2005icr/aasld/docs/111405_h.html

It suggust that if you're a "super-responder" you may only need to tx for 24 weeks.  Now I don't know if I will be a "super-responder" but it appears that 20% of the patients were.  I think I would try it for the 4 weeks to determine weather I was in that catigory,  I don't know what makes somebody a super-responder, but I am female,low vl, and not a heavy drinker so I figure I have as much of a chance as anybody. I do see that the pcr that was used wasn't the most sensitive( which of course I would request)but I would like anybody else's insight on the topic
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Avatar universal
Good thing I read all of the posts above. At first, I thought I was No Name as some use variations of that to address me. But, I am correct in my assumption you are not referring to me? I am thinking this is one of those ambiguous non verbal things that can be taken wrong.
Helpful - 0
92903 tn?1309904711
Mom - This is a controversial subject, to say the least. These days, we're seeing a tendancy towards truncated treatments for those who clear the virus early, but not everybody likes that idea.

Have you had a biopsy? Higher levels of fibrosis count against you. So does fatty liver, being overweight, higher viral loads, and a number of other factors. Or, for a more positive way of saying it - the absence of those condition goes in your favor.

I would want a Doc who was agreeable to the plan from the get-go, if for no other reason than having all cards on the table for mid-treatment decision making. Also, if you can't dig up a competent hepatologist who thinks it's a good plan, it probably ain't a good plan.

You'll hear a lot of comments on this, I'm sure. Best wishes to you on whatever you decide. Be careful listening to anyone with goofy in his name.

Misty - Will the dude not re-up your prescription for 4 more measly weeks? With all you have going for you - I would like to think you're OK - and might be anxious to stop were it me. But if you don't want to stop, as long as you aren't placing yourself in harms way - I say the dude should follow your wishes. And you can tell 'im I said so, too :-p
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Avatar universal
Hi.  I'm a 56 year old female, 1b, had virus 30+ years, 137 lbs, 13/48 peg/copeg, viral count before treatement 320,000.  Had 12 week pcr Monday and results in on Friday.  Was told it would take 2 weeks to get results. Have appt. to get results next week.  My nurse said could not give results over phone.  Does the quick test result have any significance?  I am very anxious about the test results.  Thanks for letting me use this thread.
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92903 tn?1309904711
I can give you a bit of info while we wait for Jim.

These tests usually, if not always, get sent out to be processed. The processing place might run one batch a week - true even if they're not sent out I suppose. So, if you get it in right before the batch is run, you could get a much faster result. I had a Quant. PCR come back last week in a few days (Thurs to Mon) - accurate to < 50 iu.

Sometimes the Doc might order two tests - one to quantify the bugs, and another to qualify whether there are any bugs to quantify. I had two done last month and the Quant took one week and the Qual took a bit longer. Sometimes the back-to-back tests are run under the umbrella of one test. I believe the heptomax does a Quant PCR, followed by a Qual TMA if the PCR was neg.

My guess would be that there's nothing to read into the quick return. It probably means you caught a batch ready to be run. It could mean they chose not to do the second test because the first showed virus - or the second test is still pending, who knows.

I would try not to sweat it - but that's easy for me to say. Why your doc won't release the results is another issue. But you didn't ask about that so I just deleted my rant on the subject :) <small>it was right here but now it's gone</small>

Often you can infer positive response if you've had improved ALT/AST measurements. Best of luck.          
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Avatar universal
Misty,
I agree with Goofy that the so called "short-course" treatments have their controversy. That said, EVR(early viral response), RVR (rapid viral resposne) and now what will soon probably be called "SVR" (super viral response) -- whoops can't do that, the initials are taken. :) --- OK, that's why I guess they're called "super responders." --

Anyway, there seems to be a long tradition of studies showing that earlier viral responses is a positive predictive factor for SVR, starting way back with the 2-log drop at week 12 formula. I see these newer studies, if/when they pan out, as a logical extension of that.

Where I differ from Goofy's statement is in the role other factors such as fatty liver, being overweight, higher viral loads, degree of fibrosis, etc. play.

From the way it was explained to me by a well-repsected hepatologist, the above are *pre-tx* predictors, meaning one can get  SVR indications either yea or nea based on these and other factors.

However, once treatment actually starts, it's the EVR/RVR that overrides any pre-tx predictors in terms of SVR. That said, some of the studies mitigate the super-response with additional factor such as pre-tx viral load or AST, so apparently it's not a lone override but one with a piggyback component.

So far, for example, significant fibrosis still remains a negative pre-tx predictor for SVR, but has not be shown to be a reason for a super responder not to take a short-course treatment, at least not yet based on a negative week 4 PCR.

That,that  said, until more studies are done anyone with significant liver damage probably should give at least a little pause to these studies because they have less wiggle room and more at risk with their liver.

But personally, if I had little or no liver damage and chose to treat, I'd seriously consider the shorter-course treatment which would expose me to less drugs over less time. It's back to the ole' "risk-reward" equation that Goovy and others talked about at length in another thread.

-- Jim
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Avatar universal
I'm hesitant to venture a guess on what the timing of your results mean unless I knew the exact test and your location. If for example, the test was Heptimax, the full-test can take a little over two weeks because it's done in two-parts. The PCR portion is usually available within a week and the TMA portion which I believe is done in California, takes at least another week. Keep in mind that they don't do the TMA portion of the PCR portion shows viral load greater than 50 IU/ml. So in this specific instance, waiting longer is better.

In your case, and please forgive the cliche, it is what it is and you'll know in a few days. I would, however, have a talk with your doctor regarding test results. There' absolutely no way an adult should have to wait for their own test results pending an office visit. There's the phone, fax, mail, etc.

Again, the above just relates to Quest's Heptimax and your test procedure/timing may be very different.

All the best luck.

-- Jim
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92903 tn?1309904711
My understandng is the TMA requires extra mixing and the processing lab out here waits for the next earthquake to shake things up before processing the sample. As you say - that can take up to a week.

Didn't expect to find you up!
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Avatar universal
Not "up"...just got up. LOL. Hopefully, I'll be back to sleep soon.

-- Jim
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92903 tn?1309904711
We pass like heppers in the night....

Have a look at the 'Short Term Treatment.....' paper posted in the <a href="http://www.medhelp.org/perl6/hepatitis/messages/39713.html">News Sstories and Other Posts</a> thread.

Here are a couple mildly disturbing nuggets:

<i>
In conclusion, the authors write, "In HCV-2 or -3, the HCV RNA status after 4 weeks of therapy may guide treatment duration. Short treatment duration is effective in both HCV-2 and -3 patients with RVR, <b>but those with severe fibrosis are less likely to experience both RVR and SVR, and more frequently relapse off therapy.</b>"

Virologic relapse was observed in 29/274 RVR patients (10.6%), and was more frequently observed among those with low ALT levels (14% vs 5%), high viremia (14% vs 6%), and severe fibrosis (18% vs 8%).
</i>


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Avatar universal
Gooof quorted: In conclusion, the authors write, "In HCV-2 or -3, the HCV RNA status after 4 weeks of therapy may guide treatment duration. Short treatment duration is effective in both HCV-2 and -3 patients with RVR, but those with severe fibrosis are less likely to experience both RVR and SVR, and more frequently relapse off therapy."
----------------------

As often happens with the medical papers -- especially the abstracts -- the writing is confusing -- so really don't know what to make of it.

Do they mean that those with severe fibrosis are less likely to experience both RVR and SVR and have more frequent relapses -- because certainly that makes sense as severe fibrosis is a negative pre-tx predictor of SVR. Or, do they mean that those with severe fibrosis *who experience RVR* are less likely to experience SVR, etc. BIG difference.

Guess you gotta go fork over ten bucks or so, read the complete study, or go buy a case of beer instead. Oopps. forget the beer for now.

-- Jim

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92903 tn?1309904711
Sat night & I just knocked out my first case, better not drive till tomorrow. Who am I kidding - I had a spicy fish taco last night & would not order a bottle of non-alcoholic beer. I was like - how pathetic is this???

Looks like RVRs w/o severe fibrosis had 8% replaspe vs. 18% for those w/ severe fibrosis. I don't think the sample is big enough to read much into that - a couple extra relapsers is all it would take.

Looks to me though like RVR removes maybe half the stigma of adv. fibrosis - which ain't all that bad.  A big black mark pales to a muted shade of grey.
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Avatar universal
Good point on "muted shade of grey" or as we liked to say in the 60's to use the words of Procal Harum "A lighter shade of Pale" :)

Still, after re-reading the abstract, I can't tell for sure if the fibrosis was a pre-tx predictor or included with the RVR group. BTW , they also list "low ALT" as a neg predictor. I've seen this before but on its face doesn't seem to make sense?

-- Jim
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Avatar universal
Woh Suzyq...Take a little control of the situation and tell your doc you want to be copied in on all test results.  That is, have a copy mailed or faxed to you directly.

You can do some research to get a better idea of how to interrupt the results and/or post them here.  Many of the folks here are well studied and can give you good feed back.  
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Avatar universal
it is best to do the treatment(tx) only if you are ready and willing to go the length. You have to be mentally committed to do this or it might become an exercise in futility. These meds are hard on the body and its effects are different in everyone. Some hardly feel it, some feel it and can manage the discomfort with the assistance of their providers, and some feel it so bad that they have to take time from work. Until you start, you can't tell how it will be for you. There are some women here going through tx with kids at home. It is not easy but it can be done. You have to be ready for this. Going into tx with the thought of shortchanging tx is going to bring dissappointments and frustrations. If your damage is not severe, and you are under 45, you might be able to just monitor your condition in the hopes that easier meds will come in a few years. Bear in mind that those trials are still in the early stages and are done with selected individuals, and that once the meds are released into the vast pool of humans out there, you might see things surfacing that were not present in the early trials.
The tx is no picnic, but it is manageable AND temporary. HCV is forever.

Folks have  had all the positive predictors, have been 100% complaint, gone the 48 wks and still relapse. And then you get the underdosed, under treated and they get SVR. It is a gamble. Once you treat and quit, you will no longer be tx naive, and might find it hard to enter trials or find a dr that will be willing to work with you.
Many factors to consider, for sure.
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Avatar universal
I'd like to hone in on your question a little better after reading my ramblin' post of late last night (or was it early this morning.) :)

I think your're idea of let's call it "testing the waters" for 4-weeks to see if you're one of the 20% Super Responders is quite valid -- that is, if you have little or no liver damage.

Using the risk/reward equation then, in this scenario you're exposing yourself to the treatment drugs for 24-weeks maximum should you respond. If not, the exposure is only 4 weeks and then  you go into a "watch and wait" mode.  And hopefully, some of the newer trial drugs will not have you wait too much longer.

That said, if you're a stage 3 or 4 (significant liver damage) then you might consider the longer course treatment, as the short-course studies are only preliminary and you have less wiggle room should you not SVR.

Mom, I think this is one of your first posts,  so I guess it prudent to tell you that none of here are doctors, these are just layman opionions, and I strongly suggest you don't make any treatment decisions based on anything here until you check and double-check things out with other sources including your treatment doctor.  That said, you will find some good advice from the patient point of view.

-- Jim

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Avatar universal
Thanks for your comments.  I was justing hoping somebody actually only went 24 weeks and remained svr.  The thought of taking such intense drugs for sooo long scares the h*** out of me
but there's no time like the present.  I'm not getting any younger (40 years young) and I'm in good health now, who knows what 3 or so years may bring. Thanks again. I'm still on the fence on weather to treat or not.
Lori


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Avatar universal
Just to clarify, I'm not recommending that any genotype 1 necessarily treat -- short course or long course. In fact, many would suggest you take no course other than watch and wait. Where I see the "short course" concept for now is kind of a risk/reward compromise between traditional treatment and "watch and wait" for those with little or no liver damage who decide they want to give treatment a chance now with the current drugs. You should also check out other web sites like Janis, Hepatitis Neighborhood and Projects In Knowledge for different perspectives on treatment.

-- Jim
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Avatar universal
Yawn, stretch!!!  Where's my coffee?????

How's my biys doing today?  I see you are both up and at it already...How you feeling?  Goof, you get your labs back for this week yet?  Any improvements? Jim you still doing the B-12"s, any improvements?

*tired dip, husband hogged bed*

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Avatar universal
Mom said prev: "I'm still on the fence on weather to treat or not."
--------------

Good discussion on the pro's and con's of treating by two well-known hepatologists at: http://www.medscape.com/viewprogram/2053

See articles 2 and 3. Registration for web site may be required to access article but it's free.

-- Jim
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Avatar universal
"How's my biys" ...LOL

obviously that is supposed to say How's my boys...wake up fingers, get the lead out!!!!
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Avatar universal
If you decide to postpone treatment, I would highly advise you to thoroughly investigate the measures you can take to protect your liver while you're waiting.  

We know it will be at least two or three years (or more) until new drugs are available. The virus will continue to wreak havoc on your liver and other body parts during that time.  In some cases, the damage will be barely measurable, in other cases in could be quite dramatic.  

Since you don't have a crystal ball to tell you which camp you'll fall into, it's important to take some measures to protect your liver as best as you can while waiting.  It's also very important to monitor your liver enzymes and viral load every six months or so, and to get an annual Fibrosure test to keep on top of your fibrosis level.

I've been on an aggressive vitamin and herbal supplement regimen for the past couple of years.  Additionally, I eat a lot of "anti-inflammatory" foods and generally take very good care of my body through diet, exercise, adequate sleep, etc.  

Quite frankly, I feel better now than before I was diagnosed, and my histology has improved rather significantly.  I can't promise you'll have the same results, but it's worth a try if you decide to go the watchful-waiting route.  But keep this in mind:  You have to be willing to spend some money and be very vigilent in taking the pills consisently.  Half-hearted measures simply won't work.  It's a labor-intensive and financially expensive proposition.  

Bottom line: Waiting is a controversial option. But waiting -- and doing nothing to protect your liver during the wait (which one frequent poster to this board seems to advocate) is just plain crazy, in my opinion.

Check out the archives for postings on "Alternative Treatments" and look for comments by me, Califia, Foreseegood and others.  Don't take anything (even the stuff recommended by me and the other gals) without researching it very carefully yourself.

Good luck to you!

Susan
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Avatar universal
I agree that if you take a "watch and wait" approach you should wait smartly. This is often called leading a liver-healthy lifestyle.

A liver healthy lifestyle can include either eliminating or limiting alcohol to an occasional social drink; eating a healthy and balanced diet; a good exercise program; getting down to your ideal body weight; eliminating tobacco; stress reduction techniques, etc.

As far as vitamins and minerals, I currently take a multi-vitamin and vitamin b12 shots every other week. Others here have different vitamin regimens that work for them.

Personally, I don't take herbs as I had a bad reaction in the past probably due to not researching the herbs involved enough. That said, others have had better results.  Whatever you do, check and double check everything you put in your mouth with multiple sources including your doctor. Just like they're no doctors on this web site, there are also no nutritional professionals that I'm aware of.

All the best in moving forward.

-- Jim
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Avatar universal
I'm a 1b about to start week 21 of what was supposed to be 48. However, since I fit the profile for rapid responder - (low vl at start of tx, 4 log drop at 4 weeks (undetectable below 50 IUs), and RNA undetectable at 12 weeks), and since I have developed cotton wool spots in both eyes and have gone from hyper to hypo thyroid due to Hashimoto's autoimmune disease, (which was a gift from Interferon), they are going to pull me off treatment at 24 weeks. So I guess I will provide some statistics for the shorter tx. Needless to say, I'm apprehensive about this, but they are telling me that what stats are showing now is that there is no additional advantage for me to complete the 48 week course - my chances of relapse are the same in each case. Since I can't say that I've enjoyed any part of tx (other than this forum), for me, that's a no-brainer! All I can do at this point is hope for the best.

So, Goofy, put away the honey pot and go tell the ants they can relax and keep their body parts for themselves - I'm going to regain my eyelashes in a gentler, kinder, less dramatic fashion.
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Avatar universal
Judge for yourselves if the following verbatim statement is defamation as Kalio calls it:

"Bottom line: Waiting is a controversial option. But waiting -- and doing nothing to protect your liver during the wait (which one frequent poster to this board seems to advocate) -- is just plain crazy, in my opinion."


I said "SEEMS TO ADVOCATE".  The word "seems" reflects my opinion about Mr. No Name's position on waiting.  Calling this defamation is absolutely ridiculous.  In fact, Kalio's attack on me is more defamatory that anything I've written.  But she's not responding to me anymore, so I guess an apology won't be forthcoming.  Oh well.  C'est la vie.

Susan


  

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