Aa
How long should i go on when im free of the virus?
I have been on a treatment of interferon and ribavirin for half a year.
The virus does not show in my blood anymore.
I do however had a very hard time with the treatment and i feel
like im at the end of my strength.
This was of course the result i hoped and worked for
but now i got the advice from my doctor to go on
with the treatment for another half year.
This would better my chances that the virus will not come back.
According to my doctor the chances that the virus will come back when i stop the treatment now
are 40 % and when i go on for half a year it would be 5 %.
I would really like to know more about this subject.
For instance what would 3 months of extra treatment do for my chances...
Can i find statistics somewhere that back up the claim of
my doctor??
During my treatment i ended up 4 times in the hospital
with different complications.
Heart problems,skin problems,an inflamed jaw..etc...
Mentally im also at my end.The interferon has turned me in to
a grumpy ******* who sometimes cry's over nothing
and at an other moment feels nothing at all.
I have totally had it with the treatment and i need to have some extra info
to go on.
I feel like my body hardly can take any more of this.
What is wisdom in these circumstances???
The virus does not show in my blood anymore.
I do however had a very hard time with the treatment and i feel
like im at the end of my strength.
This was of course the result i hoped and worked for
but now i got the advice from my doctor to go on
with the treatment for another half year.
This would better my chances that the virus will not come back.
According to my doctor the chances that the virus will come back when i stop the treatment now
are 40 % and when i go on for half a year it would be 5 %.
I would really like to know more about this subject.
For instance what would 3 months of extra treatment do for my chances...
Can i find statistics somewhere that back up the claim of
my doctor??
During my treatment i ended up 4 times in the hospital
with different complications.
Heart problems,skin problems,an inflamed jaw..etc...
Mentally im also at my end.The interferon has turned me in to
a grumpy ******* who sometimes cry's over nothing
and at an other moment feels nothing at all.
I have totally had it with the treatment and i need to have some extra info
to go on.
I feel like my body hardly can take any more of this.
What is wisdom in these circumstances???
Best Answer
Well I'm hoping some if the other members will jump in on this one with some encouragement of some kind for you. I'm no doctor, but from my own experiences I can't offer any encouragement with either continuing or discontinuing your current tx. I had HCV genotype 1a since 1984. I treated three times. The first was in early experiments with interferon, and it was used alone. I didn't respond at all and it was discontinued after three months. In 2004 I was diagnosed stage 4 (cirrhosis) and was desperate to treat again. In 2005 was put on interferon and ribavirin. I responded, but not as much as hoped for. I didn't achieve UND in the time required by protocol but I pleaded with my doctor to let me keep trying. I finally did achieve UND a bit later and I stayed on tx and stayed UND through 15 months of tx. I hoped I was cured, but the virus returned at high levels only 6 weeks later. My last tx was triple tx with Incivek starting in October 2011 and going 48 weeks, ending Sept 2012. This March, 2013, I was told I achieved SVR, so it finally paid off. Sadly however, this story doesn't bode well for you. I'll try to do a little research to see if I can find the statistical odds for you, and hope they are more encouraging than my anecdotal odds, but it may take me a little time. In the meantime I can say if it was me I'd probably continue tx in spite of low odds, but that's more my nature than actual logic speaking. I would definitely encourage you to talk to your doctor about antidepressants if you are to continue tx. They can definitely improve your quality of life if you find one that is right for you. Zoloft has worked well for me. I'll be back with more as soon as I can.
I'm so sorry you are having such a long and difficult treatment! It is very unusual now for anyone with genotype 1 to be on just interferon and ribavirin, and it us also very unusual now to have such a long treatment. I checked your profile page and see that you are in the Netherlands (love that country!) and also that you were on Incivek for some period but had to quit early, and there was talk of trying Boceprivir. People here could probably offer you better advice if you filled in more details on your tx. Do you know the stage of your liver disease? How long did you take Incivek? Did you ever take the Boceprivir? When did you achieve UND status? I really hope we will be able to help you.
last Friday i reached the UND status.That is, i got the results of a test done 2 weeks before.
They never tried boceprevir with me due to heavy reaction on incivo.
State of liver in between 3 and 4.(On the edge of still making sense to treat me)
I took the Incivek for a week.
years ago a treatment with alone interferon and riba failed,so they didnt have much expectations,but against all odds its now undetectable.
I just need to know how to judge my situation,what to do.....
They never tried boceprevir with me due to heavy reaction on incivo.
State of liver in between 3 and 4.(On the edge of still making sense to treat me)
I took the Incivek for a week.
years ago a treatment with alone interferon and riba failed,so they didnt have much expectations,but against all odds its now undetectable.
I just need to know how to judge my situation,what to do.....
When you treated the other time, did you ever become Undetected?
It would be good to know which of the following statements is true:
You never became Undetectable during your past treatment (Null-Responder or Partial Responder)?
You became Undetected during your last treatment and then became detected again DURING treatment (Viral Breakthrough)?
You became Undetectable and stayed Undetectable throughout treatment, including the end of treatment viral load test, but then became Detected again AFTER treatment ended (Relapse)?
It would be good to know which of the following statements is true:
You never became Undetectable during your past treatment (Null-Responder or Partial Responder)?
You became Undetected during your last treatment and then became detected again DURING treatment (Viral Breakthrough)?
You became Undetectable and stayed Undetectable throughout treatment, including the end of treatment viral load test, but then became Detected again AFTER treatment ended (Relapse)?
SO if I understand correctly, you are genotype 1, have been on dual tx for 6 months now and became UND only 2 weeks ago. You are stage 3-4 and you are also treating second time being unresponsive to previous tx.
All this facts indicate that your doctor is correct in recommending another 6 months. I guess your full tx will be in fact 48 weeks
I am on 48 weeks as well and I am only focusing on diminishing somehow side effects if I can.
I think many of us have a somehow unstable mental status during tx. Maybe your doctor can suggest antidepressants or you could try some cognitive therapy
Maybe others have more advice
All this facts indicate that your doctor is correct in recommending another 6 months. I guess your full tx will be in fact 48 weeks
I am on 48 weeks as well and I am only focusing on diminishing somehow side effects if I can.
I think many of us have a somehow unstable mental status during tx. Maybe your doctor can suggest antidepressants or you could try some cognitive therapy
Maybe others have more advice
Not sure what your Doctor s talking about, under just SOC the SVR rate is only around 40% to begin with and the more the damage the lower the odds... Now for someone that is a prior relapser the odds the second time around are even lower. One would have to be very lucky to gain SVR with only 24 weeks of treatment and genotype 1. Even doing 48 weeks the odds are still way low... It has always been recommened if one has to retreat with SOC that genotype 1 should do 72 weeks total....... My advice would be to seek out a second opinion as your doctor is way off base with his odds and even treatment times.............. Best to you.
PS, now I may be missing something, like are you a prior relapser of treatment?
PS, now I may be missing something, like are you a prior relapser of treatment?
Aside from your previous treatment history I think the critical factor in your case is that you became undetectable quite late in treatment.
If you've been treating for half a year that would be 24 weeks.
You say you became undetectable 2 weeks+ ago if I understand you right.
If we assume you were undetectable 3 weeks ago that would mean you became undetectable at week 21. That is very late. Many doctors would have advised you to discontinue treatment when you were not undetectable by week 12.
Therefore in my opinion if you were to stop now the odds of you relapsing are quite significant.
Having said that, your chances of achieving SVR (cure) are probably not really good even if you continue treatment for 6 more months. I think the real question is whether extending treatment beyond 1 year would significantly enhance your odds of achieving SVR.
Also the fact that you have significant fibrosis is not a positive factor.
I think if you stop now there is a strong chance of relapse.
Good luck,
Mike
If you've been treating for half a year that would be 24 weeks.
You say you became undetectable 2 weeks+ ago if I understand you right.
If we assume you were undetectable 3 weeks ago that would mean you became undetectable at week 21. That is very late. Many doctors would have advised you to discontinue treatment when you were not undetectable by week 12.
Therefore in my opinion if you were to stop now the odds of you relapsing are quite significant.
Having said that, your chances of achieving SVR (cure) are probably not really good even if you continue treatment for 6 more months. I think the real question is whether extending treatment beyond 1 year would significantly enhance your odds of achieving SVR.
Also the fact that you have significant fibrosis is not a positive factor.
I think if you stop now there is a strong chance of relapse.
Good luck,
Mike
During my first treatment i NEVER became undetectable.
They stopped the treatment after 3 months or so,if my memory serve's me well.
There was not even a reduced viral load.
So....that makes me a first time non responder or whatever the term is they use for that.....
And how exactly does that say more about my treatment now???
They stopped the treatment after 3 months or so,if my memory serve's me well.
There was not even a reduced viral load.
So....that makes me a first time non responder or whatever the term is they use for that.....
And how exactly does that say more about my treatment now???
I've only had time to track down one study so far, and it doesn't show good odds for you. The full text of the study is at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912909/#, but it involved retreating patients (with interferon and ribavirin) who had previously failed, and it looked at both total odds of SVR and odds in those who did not achieve EVR (did not get to UND by week 12). Treatment length for genotype 1 was at least 48 weeks. Total odds of SVR in genotype 1 patients was 22%, but the odds of SVR in those who were total non-responders in previous tx (as opposed to relapsers) was only 17%. When they looked at just those who did not become UND within the first 12 weeks of the retreatment odds fell to only 12%.
There is also some predictive value to knowing the numerical values of your viral load before treatment and at the 12 week point, as the amount of drop can indicate your odds of achieving SVR. All of this clearly points to very slim odds if you stop tx soon, but the odds aren't all that good if you continue either. I'm so sorry you weren't able to take the protease inhibitor, as the odds are so much greater. The one really good thing about staying on tx longer now is that even if you don't achieve SVR, if you can stay UND for a while you will be giving your liver a good break from the assault of the virus and it will help it to last longer. It shouldn't be too long now before the next generation of tx drugs will be approved and available. They will be more effective AND much easier to tolerate too, so it holds a lot of hope for people who aren't able to take the protease inhibitors. You just have to keep the HCV under control a little longer. I'll let you know if I find any additional data that is helpful. Best wishes!
There is also some predictive value to knowing the numerical values of your viral load before treatment and at the 12 week point, as the amount of drop can indicate your odds of achieving SVR. All of this clearly points to very slim odds if you stop tx soon, but the odds aren't all that good if you continue either. I'm so sorry you weren't able to take the protease inhibitor, as the odds are so much greater. The one really good thing about staying on tx longer now is that even if you don't achieve SVR, if you can stay UND for a while you will be giving your liver a good break from the assault of the virus and it will help it to last longer. It shouldn't be too long now before the next generation of tx drugs will be approved and available. They will be more effective AND much easier to tolerate too, so it holds a lot of hope for people who aren't able to take the protease inhibitors. You just have to keep the HCV under control a little longer. I'll let you know if I find any additional data that is helpful. Best wishes!
Thank you so much for this!!!
Although its not the outcome i hoped for
knowledge does set me free in a way.
I will try and continue the treatment and hope for
sofosbuvir to get approved in Holland soon.
Point is i get so depressed from time to time
and physically i can also use a break
from the constant intake of poison.(interferon and riba.)
However i am totally baffled now why my doctor
gives me total other odds and averages about
my treatment.
Ill try and gather as much info as possible so
i can ask the right questions on Friday the 7 of June
when i have my next appointment with her.
Again.....you are of great help.Thanks!!!!!!!!!!!!!! (-:
Although its not the outcome i hoped for
knowledge does set me free in a way.
I will try and continue the treatment and hope for
sofosbuvir to get approved in Holland soon.
Point is i get so depressed from time to time
and physically i can also use a break
from the constant intake of poison.(interferon and riba.)
However i am totally baffled now why my doctor
gives me total other odds and averages about
my treatment.
Ill try and gather as much info as possible so
i can ask the right questions on Friday the 7 of June
when i have my next appointment with her.
Again.....you are of great help.Thanks!!!!!!!!!!!!!! (-:
Well the first time you treated your doctor was correct in stopping treatment. If one does not have at least a 2 log drop by week 12 then treatment should be stopped, why he is doing the same thing over again I don't understand but you should get a second opinion. I am pro treatment but not to the point of risking ones health. If it is not working staying on these drugs just to be on them is not a good ideal as you could be doing more harm then good, they tried doing maintenance therapy hoping that it would do the liver some good but things did not work out the way they hoped.... I know this is not what you want to hear and I am sorry.
You wanted studies that backed what your doctor said but they are not out there...... Again staying on these meds just to be on them is very risky. Good luck
You wanted studies that backed what your doctor said but they are not out there...... Again staying on these meds just to be on them is very risky. Good luck
You are welcome! I just want to add that can-do-man is also right, maintenance therapy has not been useful, so long-term use of these meds is not a reasonable option. You and your doctor have to evaluate the risks these meds are causing and compare them to the rather slim (but still real) possibility of achieving SVR, and your current doctor might be not quite up to this. You definitely need better control of the depression and your other side effects sound pretty severe if you have already been hospitalized four times in the first 24 weeks of tx. The idea I proposed about staying UND for a while as giving your liver a break from the assault of the virus is not something I've seen any statistical proof for, but it is more of a common-sense and anecdotal belief that is quite common. I feel strongly that my own long, and ultimately unsuccessful tx with SOC was a contributing factor to my cirrhotic liver staying compensated long enough 9 years so far) for me to be able to do the triple tx that cured me, but of course, I have no proof. Either way, you would probably benefit most by finding a more highly trained doctor. You should be treated by a hepatologist, and preferably one associated with a large liver clinic or a liver transplant center. Good luck!
You have been given some very good advice in the above posts. I really do not have much to add.
As far as knowing your previous treatment response, it is helpful to know the previous treatment response. Being a null responder the last time you treated, means you are not really very responsive to Interferon/Riba. This, in itself, is a predictor of poor results if one treats with the very same drugs the next time. In addition, the fact that you did not clear until week 21 this time is a predictor of poor response. Plus, you have a more advanced stage of fibrosis, which makes it more difficult to treat and also the results are not as positive (SVR rates are lower).
I agree with the above posters who advised you to find a new doctor for a second opinion. If it was me, I wold find a Hepatologist who is affiliated with a large medical center, someone who is very experienced and competent in treating Hepatitis C.
Wishing you the very best.
As far as knowing your previous treatment response, it is helpful to know the previous treatment response. Being a null responder the last time you treated, means you are not really very responsive to Interferon/Riba. This, in itself, is a predictor of poor results if one treats with the very same drugs the next time. In addition, the fact that you did not clear until week 21 this time is a predictor of poor response. Plus, you have a more advanced stage of fibrosis, which makes it more difficult to treat and also the results are not as positive (SVR rates are lower).
I agree with the above posters who advised you to find a new doctor for a second opinion. If it was me, I wold find a Hepatologist who is affiliated with a large medical center, someone who is very experienced and competent in treating Hepatitis C.
Wishing you the very best.
I just realized there has been no mention of your ribavirin and interferon doses and your weight.
Back in the days of SOC that would have been one of the first things members would have wanted to know but there's been no mention of doses - unless I missed it.
Back in the days of SOC that would have been one of the first things members would have wanted to know but there's been no mention of doses - unless I missed it.
Are there any specific symtons of 4th stage cirrosis, because although I have serious cirriosis I have no idea what I am suppose to feel like. Right now I am so tired I can fall asleep at the drop of a hat. I have vertigo. and wieght gain and big stomach. there is itching. But other than that I dont have any other sickly feelings. I know I should be asking these questions of my new doctor, but it will be awhile before I can see him. I am curious what you think.
Hi Bluebird! You really should post this as a new question (the orange button up top), and preferably on the Cirrhosis of the Liver Community here http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390, for good answers about cirrhosis. Here's my answer anyway: Early cirrhosis (fully compensated) has no symptoms in particular, although I think fatigue is pretty common. When decompensation occurs one can get a wide range of symptoms. You should read up on it at a number of places on the web to get a balanced view. I'm pasting a list below that was compiled by the University of Maryland Medical Center. Your fatigue, itching and big belly (possibly ascites) may all be symptoms of your cirrhosis.
Cirrhosis - Complications
http://www.umm.edu/patiented/articles/what_symptoms_of_cirrhosis_000075_4.htm
Complications:
A damaged liver affects almost every bodily process, including the functions of the digestive, hormonal, and circulatory systems. Decompensated cirrhosis increases the risk of serious and potentially life-threatening complications. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) The most serious complications are those associated with portal hypertension (increased pressure in the portal vein that carries blood from the intestine to the liver). They include:
Ascites (fluid buildup in the abdomen) which can lead to (SBP) Spontaneous Bacterial Peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites. Other bacterial infections are also a common complication of cirrhosis.
Other bacterial infections are also a common complication of cirrhosis.
Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)
Hepatic encephalopathy (damage to the brain). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma and death.
Cirrhosis - Complications
http://www.umm.edu/patiented/articles/what_symptoms_of_cirrhosis_000075_4.htm
Complications:
A damaged liver affects almost every bodily process, including the functions of the digestive, hormonal, and circulatory systems. Decompensated cirrhosis increases the risk of serious and potentially life-threatening complications. (Once decompensation occurs, mortality rates without liver transplantation can be as high as 85% within 5 years.) The most serious complications are those associated with portal hypertension (increased pressure in the portal vein that carries blood from the intestine to the liver). They include:
Ascites (fluid buildup in the abdomen) which can lead to (SBP) Spontaneous Bacterial Peritonitis is a form of peritonitis (inflammation of the membrane that lines the abdomen), which is associated with ascites. Other bacterial infections are also a common complication of cirrhosis.
Other bacterial infections are also a common complication of cirrhosis.
Variceal hemorrhage (bleeding in the upper stomach and esophagus from ruptured blood vessels)
Hepatic encephalopathy (damage to the brain). Impaired brain function occurs when the liver cannot detoxify harmful substances, and can lead to coma and death.
You do realize if you quit treatment you will not be able to do this treatment again. I agree you need a second opinion.
Meanwhile, you will get plenty support from this forum.
No question you have will be ignored so fire away.
Wishing you the best.
Reva
Meanwhile, you will get plenty support from this forum.
No question you have will be ignored so fire away.
Wishing you the best.
Reva
Hi, unfortunately I think the answers above are correct. If you did not have a > two log drop by the end of 12 weeks, your doctor probably should have stopped treatment, because you were not responding well, and there probably was no point to continuing. However, since you have now attained UND, I guess there is always that possibility that you will remain UND. I am not an expert, but it seems as though your body does not respond as well to Interferon as some others do, making you a partial responder. I agree with others who say that you should be seen by a hepatologist, who could better evaluate whether you should continue, since you are now UND, or discontinue since your current doctor did not follow the futility rules for treatment with Interferon and Ribavirin. Perhaps a hepatologist would feel that it's reasonable to continue for another month and re-check your viral load to see if you are still UND before deciding. Keep us posted.
Advocate1955
Advocate1955
I weigh 90 kilograms.get 2 times 400 riba a day, and once a week 180 mg interferon.
As usual when i hoped to be able to talk to my doctor she was away again.
She is never at work,and also by phone it is impossible to reach her.
She leaves everything to her assistant who only says the obvious things.
My doctor,Dr.Kerbert-Dreteler from ''Medisch spectrum Twente in Enschede'',
never has got time to talk.The few times i saw her for ten minutes at the most, she has some monologue and doesnt listen to any of my questions.
Im afraid to look for an other doctor cause most of them all know each other.
i dont want to become known as a patient that creates conflicts.
I wished i knew how to get an other doctor.
She is never at work,and also by phone it is impossible to reach her.
She leaves everything to her assistant who only says the obvious things.
My doctor,Dr.Kerbert-Dreteler from ''Medisch spectrum Twente in Enschede'',
never has got time to talk.The few times i saw her for ten minutes at the most, she has some monologue and doesnt listen to any of my questions.
Im afraid to look for an other doctor cause most of them all know each other.
i dont want to become known as a patient that creates conflicts.
I wished i knew how to get an other doctor.
You need to take care of you. I understand the feeling you have about "the doctors all know each other ". Forget it!! If your not comfortable with your doctor, find a new one. I agree with the others a hepatologist is who you should be seeing at this point. I had to switch docs in the 7th week of my treatment. I had the same fear, they all talk to each other. Well they might, but they don't all treat there patients the same. Ask around. But don't go on suffering and wondering. It's has been said on here many times, "be proactive in your health" it's yours. You can always come on the forum and ask questions, but if your not happy with your doctor there isn't anyone on here that can fix it. I'm wishing you the bet of luck!!
If I am reading it right you're taking 800 mg ribavirin per day.
That might be a factor as to why you became undetectable so late in treatment. 800 mg ribavirin per day does seem a bit low to me.
Without knowing the specifics of your situation, in general a male weighing 90 kilograms should be taking not less than 1000 mg ribavirin per day and many doctors would recommend 1200 mg per day.
If I'm understanding you right and if you have no contraindicating issues this might further suggest that you might do better with another doctor.
Good luck,
Mike
That might be a factor as to why you became undetectable so late in treatment. 800 mg ribavirin per day does seem a bit low to me.
Without knowing the specifics of your situation, in general a male weighing 90 kilograms should be taking not less than 1000 mg ribavirin per day and many doctors would recommend 1200 mg per day.
If I'm understanding you right and if you have no contraindicating issues this might further suggest that you might do better with another doctor.
Good luck,
Mike
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