Aa
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...
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...
thanks for you encoraging words...i believe i am in stage 2 and alt/ast around 105 / 80 , my blood test perfect ...no problem , anyway the first impression I had it was a fair response , but looks not ... should I been much clear by now?
thanks...
thanks...
techcherry, at the 12wk mark they are looking for a 2log drop in your viral load. Somebody else here will have to help with the math but it does seem that you responded which is a good thing. Clear results are the ideal but it may take more time.
For each log drop move the decimal 1 place to the left. Starting vl 1,000,000 and a 1 log drop would make it 100,000 - a 2 log drop 10,000 and so on. Mike
I will find the info for you. A 2log drop is an indicator that you are responding to the treatment, at least that's what I've been told. There are others here much more knowledgeable on the subject. I am relatively new here but have learned so much in a short amount of time. My pcr is 4 mil so at the 12wk mark I'm hoping for at least a 2log drop.
the thing here is I am now going to the 5 1/2 motnh tx , but the dr is saying if the next pcr (* I will do it beggining of may ) to receive results by end of may , if results are not good , to me to stop, I wonder If is not based in a financial decision, because here in the uk we get it for free ...but I can see maybe I have to fight him a bit!!
yeap , I suspect so , but I just been reading a bit around his forum, and actually I believe maybe I have good chances still, because The svr is different from person to person...
plus lets see , if the good result would be a 2log drop these would be 56.000 so I am a bit less then the double so it cannot be a bad response?
No, 56,000 is a 1-log drop, and not nearly enough for the tx to produce a final SVR. The 2-log drop would be 5,600 copies of the virus, or less. Most people who do not have at least a 2-log drop by 12 weeks are considered to be either non-responders, or at best partial-responders.
The odds of SVR with less than a 2-log drop are less than 2%, if even that high.
You may need either a higher dose of Peg-Intron (I did double the standard dose, for 18 months), or a switch to either Pegasys, or daily high dose infergen. The Ribavirin dose that you are taking (1,200 mg.) is the maximum standard dose used, and in fact with your low weight, is pretty high dosing.
Seems to me the interferon dosing is just too low, or you MAY respond to a different type (most likely Infergen/Daily/High Dose), OR you may be a non-responder, and may need to look fer future medications and combinations.
You need to be working with a doctor who can provide some flexibility and creativity to your therapy, and who understands thoroughly how to deal with difficult responders, like yourself. With the very slow, inadequate response you have gotten, you will definitely need a major change in strategy. Just waiting until 6 months, using the same dosing, does not seem to me to be very promising. Major viral load declines would have taken place already.
Talk more with your doctor, and see if you can revise the game plan.
DoubleDose
The odds of SVR with less than a 2-log drop are less than 2%, if even that high.
You may need either a higher dose of Peg-Intron (I did double the standard dose, for 18 months), or a switch to either Pegasys, or daily high dose infergen. The Ribavirin dose that you are taking (1,200 mg.) is the maximum standard dose used, and in fact with your low weight, is pretty high dosing.
Seems to me the interferon dosing is just too low, or you MAY respond to a different type (most likely Infergen/Daily/High Dose), OR you may be a non-responder, and may need to look fer future medications and combinations.
You need to be working with a doctor who can provide some flexibility and creativity to your therapy, and who understands thoroughly how to deal with difficult responders, like yourself. With the very slow, inadequate response you have gotten, you will definitely need a major change in strategy. Just waiting until 6 months, using the same dosing, does not seem to me to be very promising. Major viral load declines would have taken place already.
Talk more with your doctor, and see if you can revise the game plan.
DoubleDose
Thanks for your explanation to techcherry. I was trying to be helpful but this is new to me as well. I will try and not respond when I am unclear on the subject.
So Doubledose, how might you feel if techcherry dropped out of tx after reading your post, basing the decision on your assessment of a 2% chance of SVR without achieving a 2 log drop at 12 weeks? Especially if some later test showed he would have been in that 2%?
STATISTICS DERIVED FROM GROUP STUDIES ARE NOT APPLICABLE TO INDIVIDUALS!!! Please remember that, techcherry, and remind your doc as well. There are many factors to consider when making tx decisions.
Of course I have a lot invested in believing this, as I cleared at about week 32, and have chosen to extend tx to 20 months. As my doc put it, "if you are in that 2%, your odds of SVR are 100%." Also, I believe that recent studies of extended tx show that it can improve those odds. So can higher doses of Riba.
BTW, 103 KG = 226.6 lbs, not exactly a lightweight.
Recently I realized I had accumulated some extra Riba, and have been taking 1200/day instead of 1000 for the last 10 days. I get bloods done next week. I definitely feel the difference, more fatigue, and I don't know if I should keep this up or not. Anyone have thoughts on this? Oh, I weigh 135 lbs, so based on the standard formula, even 1000 is alot. Revenire, I keep hearing you say "Suck that Riba", haha. 3 1/2 months to go...
Good weekend all,
dA
STATISTICS DERIVED FROM GROUP STUDIES ARE NOT APPLICABLE TO INDIVIDUALS!!! Please remember that, techcherry, and remind your doc as well. There are many factors to consider when making tx decisions.
Of course I have a lot invested in believing this, as I cleared at about week 32, and have chosen to extend tx to 20 months. As my doc put it, "if you are in that 2%, your odds of SVR are 100%." Also, I believe that recent studies of extended tx show that it can improve those odds. So can higher doses of Riba.
BTW, 103 KG = 226.6 lbs, not exactly a lightweight.
Recently I realized I had accumulated some extra Riba, and have been taking 1200/day instead of 1000 for the last 10 days. I get bloods done next week. I definitely feel the difference, more fatigue, and I don't know if I should keep this up or not. Anyone have thoughts on this? Oh, I weigh 135 lbs, so based on the standard formula, even 1000 is alot. Revenire, I keep hearing you say "Suck that Riba", haha. 3 1/2 months to go...
Good weekend all,
dA
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.
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
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
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
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.
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.
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
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
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
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.
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
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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