Aa
Treatment
I am treating for the second time on Pegasys and Riba. Last time (2003) I cleared after 3 months of treatment, but I encountered problems that made me stop after 19 weeks. I decided to try again this year, but I did not clear after three months. The only thing I did different this time is that I used a generic brand of riba instead of the Copegas I used last time. Do you think this could be the problem, or could my body have developed immunity to the meds?
Before treatment my viral load was 269,288. After three months it is now 84,300. I have read articles stating that if your don't clear at the 3 month mark, you might be wasting your time. My doc is suggesting that I treat for eleven more months. Am I wasting my time? I took leave from work to try and complete the treatment, and I am going to burn up a large amount of my savings over the year.
Help?
Before treatment my viral load was 269,288. After three months it is now 84,300. I have read articles stating that if your don't clear at the 3 month mark, you might be wasting your time. My doc is suggesting that I treat for eleven more months. Am I wasting my time? I took leave from work to try and complete the treatment, and I am going to burn up a large amount of my savings over the year.
Help?
resource: I am planning on asking my doc to switch to pegintron
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In light of your non-response at week 12, you should seriously consider getting a second opinion from a liver specialist (hepatologist). It's not just about switching pegs and then treating for 72 weeks, but about analyzing your entire treatment history in terms of the latest studies. Having a knowlegeable doctor by your side will make these decisions a lot easier.
-- Jim
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In light of your non-response at week 12, you should seriously consider getting a second opinion from a liver specialist (hepatologist). It's not just about switching pegs and then treating for 72 weeks, but about analyzing your entire treatment history in terms of the latest studies. Having a knowlegeable doctor by your side will make these decisions a lot easier.
-- Jim
Thanks. Last time I stopped because of vision problems. I am a 1a, Last bio in 2005. Stage 1, Grade 4. I am due for another bio in 2008.
I had viral load test before treatment and at l2 weeks only.
Last time I used Pegasys (vile) and Copegas same strength as second time. 180 and 1000 riba.
My weight now is about 15 pounds more than when I treated before.
The second treatment I use the prepared pen and generic riba. I had strong sides the first time, but this time nort many. I have actually put on weight, and my hair is growing. Also my blood work is almost better than before treatment. I can definitely state that the meds were not as potent this time as last time.
I am planning on asking my doc to switch to pegintron
I had viral load test before treatment and at l2 weeks only.
Last time I used Pegasys (vile) and Copegas same strength as second time. 180 and 1000 riba.
My weight now is about 15 pounds more than when I treated before.
The second treatment I use the prepared pen and generic riba. I had strong sides the first time, but this time nort many. I have actually put on weight, and my hair is growing. Also my blood work is almost better than before treatment. I can definitely state that the meds were not as potent this time as last time.
I am planning on asking my doc to switch to pegintron
Hopefully not to be missed in my post is that you had less than a one-log response in 12 weeks which makes you pretty much a non-responder. Unless you show some specific response (within study limits) extending treatment does not appear to be the answer in terms of reaching SVR. Again, get another consult with a liver specialist (hepatologist) and try and come up with a plan that makes sense.
-- Jim
-- Jim
You didn't give too many stats such as genotype, sex, age, race, weight, amount of liver damage, side effects the first time around, etc. -- all these factors and more can affect things -- so I'll try and answer in a very general way -- probably with more questions than answers -- but will assume you're a genotype 1.
First, sorry things didn't work out the first time. You said you cleared after 3 months which made you an EVR (early viral responder). What you don't say is did you test earlier -- let's say at week 4. If you did, that would tell you if you were an RVR (rapid viral responder) or not.
You then say you had to stop at 19 weeks because of "problems". What problems? That's important to know and address, because one of the first principles of re-treating is to try and best figure out what went wrong the first time and then to address it the second time. This particular point is emphasized in the Dieterich/Jensen Video over at the Clinical Care Options web site.
And then there's the issue of not being EVR this time. Again, so many reasons why that might be. Are you taking the same Peg? Has your dose of ribavirin changed? Has your body weight changed? Has the condition of your liver change in the last 4 years? When was your last biopsy? And the biopsy before that? Did you have any viral load tests before week 12?
In any event, you've had less than a one-log drop in 12 weeks which means you aren't responding very well.
Some studies suggest that if you become UND by week 24, then extending treament to 72 weeks will give you maybe a 50-50 chance of SVR, but please dig up those studies because this is from memory.
However, I also seem to remember that one of the studies suggests that you may need a two-log drop by week 12, otherwise extending to 72 may not be very helpful. Again, don't take my recollection, but spend time finding those studies -- maybe someone else will post them -- and order up the full-text studies, even if it costs a few bucks. The abstracts are often not enough.
But the one thing the studies do seem to have in common is that if you're still detectible at week 24, then treating beyond that point would be for reasons other than SVR, such as improved liver histology, i.e. mainteance. But even that is being challenged by some newly released data. I believe that's the WIN-R study now being presented at AASLD. Again, dig that up.
Bottom line is that you need to put your entire history together with the newer studies and come up with a plan to determine if treating further will do more good than harm. And as you can see there are lots and lots of variables with lots and lots of newer studies offering up different treatment protocols.
From that, hopefully you will come up with some answers as to why you're not responding as well as the first time, and what your odds would be moving forward with a particular treatment plan. Then you can make a more informed decision whether to continue treating (and with what protocol) or whether you should stop.
And no doubt the amount of liver damage you have will also be factored in, because significant liver damage might argue for more agressive treatment even with declining odds while little or no liver damage might argue for stopping when faced with declining odds paired with prospect of extended and agressive treatment.
For all these reasons, I think it's very important you consult with a hepatologist (liver specialist) to guide you in putting everything together and coming up with a plan. Not that they don't drop the ball sometimes, and not that some GI's aren't good -- but just too much new stuff coming out every day -- and a liver specialist would most probably be the most up to date. Of course, if so motivated, do the research yourself and collaborate with the liver specialist in your treatment. And if you're already seeing a hepatologist, then a second (or third) opinion may be in order.
As to the riba, I don't really think one brand or another makes any difference -- but given the choice (I'm a bit superstitious) why not go with the one that got you an EVR, although at this point I don't think that is what your focus (brands of riba) should be.
Hope this helps some, but whatever you do, don't leave things as they are. Do something ASAP. See a liver specialist and come up with a plan that makes sense.
All the best,
-- Jim
First, sorry things didn't work out the first time. You said you cleared after 3 months which made you an EVR (early viral responder). What you don't say is did you test earlier -- let's say at week 4. If you did, that would tell you if you were an RVR (rapid viral responder) or not.
You then say you had to stop at 19 weeks because of "problems". What problems? That's important to know and address, because one of the first principles of re-treating is to try and best figure out what went wrong the first time and then to address it the second time. This particular point is emphasized in the Dieterich/Jensen Video over at the Clinical Care Options web site.
And then there's the issue of not being EVR this time. Again, so many reasons why that might be. Are you taking the same Peg? Has your dose of ribavirin changed? Has your body weight changed? Has the condition of your liver change in the last 4 years? When was your last biopsy? And the biopsy before that? Did you have any viral load tests before week 12?
In any event, you've had less than a one-log drop in 12 weeks which means you aren't responding very well.
Some studies suggest that if you become UND by week 24, then extending treament to 72 weeks will give you maybe a 50-50 chance of SVR, but please dig up those studies because this is from memory.
However, I also seem to remember that one of the studies suggests that you may need a two-log drop by week 12, otherwise extending to 72 may not be very helpful. Again, don't take my recollection, but spend time finding those studies -- maybe someone else will post them -- and order up the full-text studies, even if it costs a few bucks. The abstracts are often not enough.
But the one thing the studies do seem to have in common is that if you're still detectible at week 24, then treating beyond that point would be for reasons other than SVR, such as improved liver histology, i.e. mainteance. But even that is being challenged by some newly released data. I believe that's the WIN-R study now being presented at AASLD. Again, dig that up.
Bottom line is that you need to put your entire history together with the newer studies and come up with a plan to determine if treating further will do more good than harm. And as you can see there are lots and lots of variables with lots and lots of newer studies offering up different treatment protocols.
From that, hopefully you will come up with some answers as to why you're not responding as well as the first time, and what your odds would be moving forward with a particular treatment plan. Then you can make a more informed decision whether to continue treating (and with what protocol) or whether you should stop.
And no doubt the amount of liver damage you have will also be factored in, because significant liver damage might argue for more agressive treatment even with declining odds while little or no liver damage might argue for stopping when faced with declining odds paired with prospect of extended and agressive treatment.
For all these reasons, I think it's very important you consult with a hepatologist (liver specialist) to guide you in putting everything together and coming up with a plan. Not that they don't drop the ball sometimes, and not that some GI's aren't good -- but just too much new stuff coming out every day -- and a liver specialist would most probably be the most up to date. Of course, if so motivated, do the research yourself and collaborate with the liver specialist in your treatment. And if you're already seeing a hepatologist, then a second (or third) opinion may be in order.
As to the riba, I don't really think one brand or another makes any difference -- but given the choice (I'm a bit superstitious) why not go with the one that got you an EVR, although at this point I don't think that is what your focus (brands of riba) should be.
Hope this helps some, but whatever you do, don't leave things as they are. Do something ASAP. See a liver specialist and come up with a plan that makes sense.
All the best,
-- Jim
Everyone seems to value your opinion. Would you respond to my thread?
Treatment--10/31/07
I would like to know what your recommend.
Treatment--10/31/07
I would like to know what your recommend.
It is interesting (and sad) to me that you were clear by week 12 last time, and this time only had a half-a-log drop by week 12, which is a non-response. How can this be? I understand it to be that we don't get resistent to interferon and ribavirin, so why this difference in responses? Have you had any biopsies done, what is your liver damage, could progression of liver damage be effecting the tx result? I would definitely consult a hepatologist to discuss your different responses to tx with him. Maybe your liver damage is not so bad, so you can wait for the better drugs that are hopefully coming soon? You have responded once, so together with the new drugs I bet you can beat the virus yet.
Zazza
Zazza
ditto expert will chime in, meanwhile, I think one of the big ??????'s is how has this virus mutated.
with HIV it could mutate as often as every 20 minutes, making it something they had to throw any and everything at to halt or slow down. that's not to say things on the horizon may not overcome this, but the whole reasoning for desparately seeking SVR seems to have always been to keep from seeing something atomic from showing up.
no one can accurately predict when and to what degree something will mutate, but in nature we see astounding adaptations in only one or two generations of organisms, given a need to change, or a change in diet, critters literally do change their spots.
what made you stop last time, if I might ask? please be commited.
reminds me of my farm days, if you wanted to get rid of tansy in the field you had to keep pulling and spraying for 2 or 3 years because everytime you left one standing you'd get new plants that even sprays wouldn't kill (without killing the grazing animals too...and of course you couldn't leave the tansy either, or that would kill em....so it was pull pull and keep on pulling.
we are kinda in the same stage with HCV, until the "penicillin" comes along that will wipe out this disease we just have to keep setting backfires and pulling so to speak. does that make sense to you???
with HIV it could mutate as often as every 20 minutes, making it something they had to throw any and everything at to halt or slow down. that's not to say things on the horizon may not overcome this, but the whole reasoning for desparately seeking SVR seems to have always been to keep from seeing something atomic from showing up.
no one can accurately predict when and to what degree something will mutate, but in nature we see astounding adaptations in only one or two generations of organisms, given a need to change, or a change in diet, critters literally do change their spots.
what made you stop last time, if I might ask? please be commited.
reminds me of my farm days, if you wanted to get rid of tansy in the field you had to keep pulling and spraying for 2 or 3 years because everytime you left one standing you'd get new plants that even sprays wouldn't kill (without killing the grazing animals too...and of course you couldn't leave the tansy either, or that would kill em....so it was pull pull and keep on pulling.
we are kinda in the same stage with HCV, until the "penicillin" comes along that will wipe out this disease we just have to keep setting backfires and pulling so to speak. does that make sense to you???
I'm on peg 180 1x per week, ribavarin 1000mg per day and neupogen 480 2x per month.
I'm a 1A, in week 46 (tonight). I didn't reach UND until approx. week 16-18 and I'm on the extended 72 week TX.
From what I understand, i would say you are a slow responder as opposed to a non-responder as you have had a VL decrease.
it's a tough situation to be in but, just passing on some of the info I've garnered here over the past year, it seems like you might need to increase your meds, change interferons or do something else to jumpstart your system.
there are a couple of very knowledgeable people here (I'm not one of them) and you might want to flag Jimjim or Mike Simon or Valtod; Hepatitis Researcher may also see your post and chime in.
If you want to see some of the studies let me know and I'll be happy to pass them on, as was so kindly done for me.
wyntre
I'm a 1A, in week 46 (tonight). I didn't reach UND until approx. week 16-18 and I'm on the extended 72 week TX.
From what I understand, i would say you are a slow responder as opposed to a non-responder as you have had a VL decrease.
it's a tough situation to be in but, just passing on some of the info I've garnered here over the past year, it seems like you might need to increase your meds, change interferons or do something else to jumpstart your system.
there are a couple of very knowledgeable people here (I'm not one of them) and you might want to flag Jimjim or Mike Simon or Valtod; Hepatitis Researcher may also see your post and chime in.
If you want to see some of the studies let me know and I'll be happy to pass them on, as was so kindly done for me.
wyntre
From your stats, it looks as though you haven't even reached a 1 log drop after 3 months (12 weeks) of tx.
As far as i know, the recommendation is that if you achieve at least a 2 log drop at week 12 ( in your case that's approx. 2,692) then continue to week 24 and if at that point you've reached UND, the extended 72 week TX is recommeneded.
But your numbers indicate that you haven't even reached a 1 log drop although you're close. 1 log would be 26,928 and you're 84,300.
I would definitely consult with your Dr. about TX options.
Best of luck,
wyntre
ps - I'm 1A, at week 46 of the extended TX.
As far as i know, the recommendation is that if you achieve at least a 2 log drop at week 12 ( in your case that's approx. 2,692) then continue to week 24 and if at that point you've reached UND, the extended 72 week TX is recommeneded.
But your numbers indicate that you haven't even reached a 1 log drop although you're close. 1 log would be 26,928 and you're 84,300.
I would definitely consult with your Dr. about TX options.
Best of luck,
wyntre
ps - I'm 1A, at week 46 of the extended TX.
Thanks for the advice. I am a 1a, the hardest to beat. I used the same meds again because I cleared after three months last time. I stopped because of eye problems. Since then I had my eyes hecked out and the doc said it was ok to try again.
I believe I will ask my doc about the pegintron.
I believe I will ask my doc about the pegintron.
I don't believe that using a generic brand would make any difference at all.
IF your doctor would up your riba from the last course of treatment...and maybe switch you over to PegIntron I think it would be worth a second try. But I sort of think you are right and using the same EXACT meds doesn't make much sense to me.
Its hard to tell - you don't say which geno type you are. Typically all geno1 treat for 48 weeks so I am thinking maybe you are a 2 or 3 and he is suggesting extended treatment?
Still...if after 3 months you still have such a high number you now need to wait to see IF you are UND at week 24. IF you are UND at week 24 then typically you should treat for 72 weeks all together for maximum chances that is if you are a geno 1.
That is what I did and I am SVR. However my count went from 568,000 baseline to 411 at week 4, 419 at week 12 and then I did clear at week 24.
Personally, I think you should be using different medications at LEAST since you have already tried this and it doesn't seem to me like you are responding appropriately at all.
But - I'm no doctor.
Sorry nobody answered this thread - I'm at work and it gets tough for me to catch them all...if they get posted at night I wouldn't see it until the next day and only pretty much if it was on top.
People here ALWAYS respond but sometimes...............we just miss something.
I hope my post made sense. Someone like Jim or HepResearcher will certainly give you a more thorough response but I wanted to make sure you had something!
IF your doctor would up your riba from the last course of treatment...and maybe switch you over to PegIntron I think it would be worth a second try. But I sort of think you are right and using the same EXACT meds doesn't make much sense to me.
Its hard to tell - you don't say which geno type you are. Typically all geno1 treat for 48 weeks so I am thinking maybe you are a 2 or 3 and he is suggesting extended treatment?
Still...if after 3 months you still have such a high number you now need to wait to see IF you are UND at week 24. IF you are UND at week 24 then typically you should treat for 72 weeks all together for maximum chances that is if you are a geno 1.
That is what I did and I am SVR. However my count went from 568,000 baseline to 411 at week 4, 419 at week 12 and then I did clear at week 24.
Personally, I think you should be using different medications at LEAST since you have already tried this and it doesn't seem to me like you are responding appropriately at all.
But - I'm no doctor.
Sorry nobody answered this thread - I'm at work and it gets tough for me to catch them all...if they get posted at night I wouldn't see it until the next day and only pretty much if it was on top.
People here ALWAYS respond but sometimes...............we just miss something.
I hope my post made sense. Someone like Jim or HepResearcher will certainly give you a more thorough response but I wanted to make sure you had something!
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