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pcr 12 weeks still with 116.000 viral load

hi
I gvot my result from 12 weeks pcr and were a bit dissapointing , I started with 560.000 and now i am in 116.000 with the liver values still around the 100 , my doctor said on the 6 months pcr if the virus is still detectable we should stop the treatment , is this normally the procedurte, how propable it is to be clear?
by the way I am in combination therapy =ribav. 1200/day plus pegint.180 once a week...
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Avatar universal
is there anyone non responder to pegasys+ribav. and changed to infergen + rib. and been sucessfull in getting svr ...
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Avatar universal
thanks all for the comments...but to be honest I always been a fighter , so they will have one in case my response is not good, by the way , I am in pega ineterferon 2a or pegasys 180 mg a week ...
doubledose can you reccomend me some reports for i can print them and argue with my doctor, please?
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Avatar universal
Califia, I think the doc can work this out. At first the insurance company said I had used up my benefit, but there is no limit in my policy.  Then they approved the lower dose.  If I stay anemic, they have no leg to stand on.  And as I pointed out to them, they shouldn't punish me for the crime perpetrated by the manufacturer, Amgen, which sells it for $800 to $1000 a pop!

Cuteus, that you have such a generous thought makes me feel as good as the Procrit would... well, as long as I'm not climbing any stairs. Thanks so much.  Maybe your doc can give it to someone who has no insurance.

"I'm feelin' those good vibrations"

dA
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Avatar universal
Thanks - I get now. Mike
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Avatar universal
I hope you and your doc are keeping the pressure on your *&^%$$$$ insurance company.  Wonder what their upper management salaries look like.   The bastids!    How do these people sleep at night, anyway?

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Avatar universal
I have had symptoms described here over the last five years. Five yrs ago the symptoms were mild and have gradually progressed to the stage I see described here. It seems to be progressing at an exponetional rate now. I was diagnosed 4 yrs ago, Stage 3+ geno 1a. The reason I haven't started treatment is long and involved but should start in a few weeks. I am hoping the sides won't be that noticeable since I feel so lousy now and having many of the symptoms described here already. ab
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another good point to bring to the dr is that even though the government will allow only 48 wks of tx if clear by wk 24, will they re treat if you relapse? That would mean an addittional expense of 48 or more weeks in your case. Why not go the extra time or modify the meds the first time around given that you are responding slowly? they rather pay again? start drafting  letters and printing reports to present your case if neccessary.


all: for those suffering with neuro and soft tissue problems, I wonder  if the many years of hcv ponding on our immune system, ensured irreversible damage to those tissues?  It amazes me how some of us have the same symtoms before tx that some start experienceing after starting TX! maybe some of us are very sensitive to even a little  natural interferon, reacting as if we were on high doses.
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Avatar universal
I am holding on to 4 vials of Procrit, I forgot to take them to my dr's office. They accept donations of unopened meds.
Maybe I can donate them to you somehow?
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Avatar universal
Thanks for responding. This really does make me feel better. I keep thinking with all these sx I must have HCV but I didn't even have these before tx so it fits that it must be the tx hangover. I am just surprised how long they are lasting. Still I will just be glad to get my PCR results later this week. LL
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Avatar universal
Sorry for the confusion.  Yes I am on daily infergen.  My labs were drawn at week 4 (day 28), but I wrote that a week later which was day 35.  I will get my results back next week (day 42) because the VA takes 2 weeks to return the viral load results.  Did I clarify this?  It is confusing to me trying to keep ;up with everything.  Plus the infergen is really messing with my head.  The peg treatment made me moody, but this infergen is a roller coaster ride from hell emotionally.  I have constant mood swings, attitude problems, and I am afraid of making decisions about anything cause I don't know if the medicine is playing a part in the decision making process or what.  Thanks mikesimon for responding, I am becoming more dependent on this forum all the time.  I must check it 2-3 times a day.  It is very comforting just reading that there are others out there going through this or who have been through this.  It keeps me on the right track especially when I feel lost or that I am losing it, can't cope, or want to quit.  I am also starting to recognize the names of the regulars and look forward to everyones progress.  My doctor thinks it is great that I have this forum to vent on and get support from.  I must agree.
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Avatar universal
Don:   No need for apology, I understand where you are coming from.  The reason that it is most important that techcherry modify the dosage, and understand the gravity of the current situation is that tech's doctor is planning on shutting down the tx if there is still a viral load at six months.  With the current numbers, not even reaching a 1-log drop after three months (when the biggest drops usually occur), and with the LFT's near 100 (no sign of normalizing liver function), the odds are astronomical that there will still be a viral load at six months.

Rather than wait helplessly for a probable shutdown to tx, I think pushing hard to change or modify therapy, to try for a reasonable response, would make the most sense.  It seems obvious that the current regime is not getting any traction, so NOW is the time to correct the course of action, and try to get some real serious drops in viral load.  If another three months go by, and tech is still vl positive (as would be predicted) then it will mean another entirely new round of tx from square one, on the heels of six months of hard work.

An experienced HCV doctor would understand the options, and make a move right now!  Also, the 2% rule usually works more for those that come close to a 2-log drop in three months, and who have reasonable odds of becoming totally clear in six months.  I think the numbers in this case are not at all encouraging, even for the 2% chance.


Layla:  As you know I also did 18 months of tx, at high doses, and experienced horrible post-tx sides, for well over a year.  I am now 19 months POST tx, am SVR, and the sides are slowly dropping away.  The sides have been as follows:  Nasty joint pain, back, neck, shoulder, arms, and hips.  The neck and shoulder, and mid-back, by far the worst, finally going away in the last few months.  Also, extremely dry, irritated eyes, sinuses, and autoimmune sx. like rash on cheekbones, feverish feeling, but low body temps., etc.  Gastro sx. have been less frequent, but sometimes pains in mid stomach.  Periods of fatigue and then high energy.  More energy developing every week though.  
Overall, I feel that it will take about two years after ending tx to be rid of the interferon hangover.  I hope the improvements continue...for both of us!  I think this is typical though, and several docstors I have spoken with have seen this same pattern in patients.

Interferon causes some long term changes in cellular and CNS behavior....takes years to get back closer to normal.
Best wishes!!

Techcherry:  Work with your doctor to modify your tx!  Increase your odds, and get assertive!  Explore daily infergen with your doc. Become a responder.  Good Luck!!!

DoubleDose
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Avatar universal
at 24 wks into tx, I meant to say.
also check this article on treating non responders:

http://clinicaloptions.com/hep/treatment/aasldrnsatellite/
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Avatar universal
you could be classified as a non responder or as a slow responder depending on the physician. either way it means you should not be treated with the standard approach of 48 wks of therapy.  
check an excerpt of this article:
"....Results

By treatment week (TW) 12, plasma HCV RNA was undetectable in 32/45 (71%) patients. These 32 patients were randomized to a further 12 weeks therapy - Group A (n=11, mean time to HCV clearance 7
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Avatar universal
Now you've confused me. You say you're at 4 weeks and injection  #35. At first I figured you must be doing daily injections of infergen but even if you were you'd only be at #28 after 4 weeks. So what have I misunderstood here? You have got the right viral load goal you want to achieve at 12 weeks so your log work is correct. Regardless of what tx you're doing I want to wish you good luck with your labs and encourage you to hang in through the tough times. I know well how much good labs can mean when you're struggling with the sides. Good luck. Mike
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Avatar universal
Doubledose, having just re-read my post, I want to apologize for being obnoxious and self righteous.  I'd like to blame the Riba, but the truth is I can be a jerk sometimes, with or without drugs of any kind.

I agree that patients need to be informed, and I think it's fine to point out that 2% figure.  If my doc and my personal research, and all the research and advice from people on this list, for instance, all pointed to a fact, that I personally had a 2% chance of SVR, it would have made the decision to continue more difficult.  But that is not the case.  You talk about science, so please ask a scientist if it is good science to apply study results to an individual.  The answer will be "no", unless the study was 100% conclusive, and even then probably only if it concurs with other similar studies.  Look at Layla, who is SVR at 6 months, but took more than 3 months to clear.  Certainly look at other options.  Pegasys has a slightly higher success rate with Type 1's than Peg-Intron.  I know that Peg-Intron is weight based, but don't know that formula, though I'm sure you must!

In sum, we focus too much on these numbers.  We are individuals.  We do not all respond in the same way.  Or we would all be SVR, or none.  Sorry again for being so obnoxious.

Cal, thanks for your Riba info.  I don't think I'll even try 1400, mostly because my supply is not that great. I just happened to realize that the bottles contain enough for a 1200 daily dose.  I'm going to keep this up and see what my blood shows, maybe end up doing something like you.  Right at this moment, 1 hour post injection, I'm actually feeling pretty sick, nausea and wicked headache, probably ought to quit typing, as my laptop screen is so hard to read I'm sure it's not helping things.

Layla, your post is both inspiring and scary.  I'm really sorry that you continue to suffer so long after stopping these awful meds, and hope that after the higher dose Riba that it just takes longer to recover.

I am on Procrit, only 10,000 a week, after my insurance company complained about the cost.  I had been getting 40,000/week, worked great.  At 10,000 my crit has only gone from 32 to 34 in 6 weeks, and for me I don't feel any better.  I need to be around 40.  If the higher Riba drops my crit again, I'll ask doc to be like Emeril and kick it up a notch.  BAM!!

Peace out,
dA

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Avatar universal
Oh yeah. I weighed 135 lbs and took 1000. Had I known what I know today I would have taken 1200. I started on pegays right after it was approved and was given a scrip for 800 a day. I did that the first month on tx but in reading forums I saw other saying that for pegasys it was not weight based like pegintronand it should be 1000. I called the docs and was upped to 1000. Well I did not clear at 3 months. I was very close but not clear. Yes I beleive this was the problem. I ended up doing 18 months full dose. Actually the last 6 weeks I did 800. I notice the difference in the dose change within a week. I just say becareful as riba sx may linger a very long time and some may be permanent. I am having some trouble still amost year post tx. LL
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Avatar universal
Yes the docs are looking for 2 log drops but that doesn't mean it is your only chance. I do think they are more strict in the UK due to the government paying. There are also many doc here in the us that won't trest unless clear at 6 months. There have been a few I have seen who have fought and been able to get what they needed but I am not sure of the system there. I also think if you want to go for this you definately need extended treatment at this point at least 48 week from clearing at full tx and agree with doubledose you might seek a higher dose or switch to pegasys. I've also seen numerous poeple not respond to one drug but then get SVR on the other. It might be worth a try on your first round. There are too many people doing tx over. If your liver is already two the meds can only help with that. I know this doesn't sound great but if your wanting to keep trying you will most likely have to fight to do it. Some people do chose to wait. It's certainly a personal choice for each of us and we all have different circumstances to deal with. I myself was not clear at 12 weeks but I was at 6 month. I did 18 months and did clearand got SVR. There is a patient my doc had to tx for 3 years and did get SVR so it can be done but it is a personal decision. I wish you the best in making it. LL
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No, my intention is just the opposite of having techcherry drop out!

In fact, my intention is to promote the opportunity for techcherry to increase the odds of success.  I do not know how you feel, but I would have had a very hard time finishing 18 months of greuling therapy if the odds of success were only 2% or less.

The other option is to 'obscure' the facts, and tell someone like techcherry that his odds are just fine, but I think that is a great disservice.  We all want the truth, so that we can make GOOD decisions.  If techcherry understands the odds, and decides that full term tx, at the current levels of dosing are acceptable, then that is just fine...BUT...it is important to understand what your chances are.  That is why many doctors are doing customized tx for patients....exactly so that patients like techcherry do not have to endure a greuling round of tx, for only 2% chance of success.  With the right modifications to tx, tech's odds might be increased dramatically.

How do you suggest dealing with the realities of techcherry's situation?  Most docs, as techcherry stated, will pull their patients off tx anyway, with a poor response....so the choice may not even be in your hands.  Better to find a way to get a proper response, than blindly floating along on a wing and a prayer.  That's why they call it science.  We can make good predictions about outcomes.  And we can try alternate strategies when one is not working.

DoubleDose
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Avatar universal
Boy this feels like deja vu....    When the Swedish pilot study was published in February, I was persuaded that extra riba was the way to go.  I, too, weight 135 lbs. and had been assigned 1,000 mg.  I upped my dosage of riba to 1200 mg, had two bad days, and then adjusted quite well.  I maintained this dose for three weeks before titring up to 1400 mg.  (I had already predetermined not to exceed 1600 mg, based on my close reading of the study.)    I lasted only a week at this level before bailing!   Experienced immobilizing fatigue and considerable eye pain and vision blurriness.   The optic effects scared me.  So now I'm back to 1200 mg when I feel the pegasys shot tapering off:  4 days at regular riba dose, and 3 days at 1200 mg.

I had a very reputable hepatologist tell me that there was no point in elevating riba after the initial 12-week period, but I personally disagree.  The Swedes actually began titring up AFTER that point, and I happen to feel that  keeping the pressure on for the duration of treatment works best.   I am concerned about keeping up with mutation and doing as effective a scouring job as possible on those darn little quasi-species.  

One thing we DO know: riba dosing is still a matter of controversy, and the only thing that keeps hepatologists from experimenting more freely with it is the high toxicity profile.   All I can say is listen to your body.   You'll definitely know when you've gone too far.
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Avatar universal
One thing to keep in mind regarding the Riba escalation issue:  Procrit or similar rbc generating drugs are almost absolutely essential to tolerating the dose increases safely.  Even with heavy Procrit dosing, several times a week, the rbc counts may still go dangerously low, when doing experimentally high doses of RIBA.  People in the Swedish study sometimes needed transfusions and hospitalization in order to continue.  

I would bet that the high doses are very helpful to SVR, the real issue is: can patients withstand the powerful effects?

Maybe one of the new RIBA derivatives being tested, which cause less anemia, will be useful in 'megadosing' strategies, and provide less side effects and higher safety.

I have always believed that with enough Interferon, and enough Ribavirin, almost ANY GT 1 HCV patient can clear, and SVR ultimately.  The problem is that some may require amounts of both that doctors find too dangerous to attempt.  Many cancer patients receive huge doses of interferon, for longer periods of time, than do HCV patients, for example.  Maybe doctors do not view HCV as being quite as life-threatening as cancer.  Maybe they should modify their thinking!

DoubleDose
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Avatar universal
Thanks mikesimon.  Someone finally put the log drop issue into language I understand.  My baseline viral load this time around was 1,370,000.  If I am figuring this right we are looking for 13,700 to have a 2log drop?  I get my results next Thursday.  It will only be after 4 weeks and we are not looking for the 2log drop for 12 weeks but the doctor and I are both curious to see what is going on with the daily infergen.   Today was injection #35.  I was hoping this was going to even out but it is still kicking my butt.  Hopefully some good news with the lab results will give me a better outlook.
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Yes,  these are important issues to raise.  As for myself, I was already on a bi-weekly schedule of Procrit and simply moved my shots up to every 10 days instead of every 14.  It worked, and my labs reflected no change whatsoever.
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That would be "bi-monthly."   Sorry.

Layla:   What kinds of lingering riba effects?
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I still have the rash I had on tx. I also still get nausea. My energy is so much better but I still get so very tired at times. I also get that pain in the liver area that started on tx but it is not near as bad as it was. My eyes are often still dry but again not near as much as on tx. The joint pain bothers me the most. When I stopped tx I did not notice a thing for at least a month. I was very dissapointed but after a month the first thing I noticed was suddenly my energy came back and that felt great but like I said for a month nothing. I finished tx last summer the 1st of July. I just hope this all goes away. I have just been waiting but called my hep doc due to an increase in joint pain. I see him Friday.
DD I beleive you had sx for a long time after tx. Does this sound familiar to you?  I am worried that perhaps I relapsed. I was SVR at 6 months post tx. I did 18 month of full tx. What do you think? LL
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