Aa
Treatment Heiarchy
How many of you have come across this? I've had the virus for thirty years, but am still stage 1. My hepatologist says because I am only stage 1, I will have to wait for treatment with the new DAA's. My symptons have been increasing in the last six months-fatigue, brain fog and trouble putting coherant sentences together. Because of my fatigue, I fall asleep at my desk, and they will no longer allow me to drive a state car, for fear I'll fall asleep at the wheel.
My last biopsy was in 2009. I had one in 2004 which also showed me to be stage 1. My last blood test was fine. ALT elevated a little, but that goes up and down.
My last biopsy was in 2009. I had one in 2004 which also showed me to be stage 1. My last blood test was fine. ALT elevated a little, but that goes up and down.
Edited to say 'wait and see' because I have brain fog even though I'm long done with treatment, it's raining out today.
Watch and wait. Imperative.
Watch and wait. Imperative.
"wait and see""
It's watch and wait not watch and see...the watch is the important part of the equation otherwise you might wait yourself straight into stage 3 or 4.......be careful.
It's watch and wait not watch and see...the watch is the important part of the equation otherwise you might wait yourself straight into stage 3 or 4.......be careful.
I watched the Teleprevir trials for 5 years and was very excited when it was approved. (BTW, I hold three science degrees, including a Masters of Science in Biology, and a minor in Chemistry-so I know how to read research publications.)
While I would like to avoid the interferon if I can, it is the anemia that really concerns me. (remember, I'm a competitive athlete). I would like to continue training (not at the level I do now), while on treatment to keep some sense of normalcy in my life.
I'm sure everyone responds differently. I'm stage 1-if my doctor says I can wait, then I'll wait.
BTW-this forum is a great resource for those who need help and advice from all of us that share a common "potentially' deadly disease. Please don' tarnish it with "copping an attitude".
Take a deep breath before you hit the "send" button
That is all.
While I would like to avoid the interferon if I can, it is the anemia that really concerns me. (remember, I'm a competitive athlete). I would like to continue training (not at the level I do now), while on treatment to keep some sense of normalcy in my life.
I'm sure everyone responds differently. I'm stage 1-if my doctor says I can wait, then I'll wait.
BTW-this forum is a great resource for those who need help and advice from all of us that share a common "potentially' deadly disease. Please don' tarnish it with "copping an attitude".
Take a deep breath before you hit the "send" button
That is all.
Once again I will state that I have no probem with people treating in the traditional manner and think they should do so in many instances. I do have a problem with individuals who tell us they have stage 0 to 1 fibrosis, little or no symptoms and for whom the doctor has recommended a "wait and see" approach, that they should see another doctor, that they should get into treatment right away or that their doctor is somehow incompetent for not immediately treating them with the standard chemotherapy. There are good reasons for using invasive approaches but there are also good reasons and times when such approaches are simply bad medicine. Here is an interesting video that ought to give us pause. http://vimeo.com/26874089 I don't believe in settling for standard therapy without continually trying to improve what we have. Unless and until such viral infections as HepC are treated and addressed in much the same way as antibiotics treat bacterial infection; our job is not over.
More heat then light here. I hope this adds at least a little light of the subject.
I find it ironic that so many of us have waited through the years for more effective treatment as many of us failed previous treatment(s) and now that it has arrived people are bickering over treatment and if and when someone should treat.
That people are still waiting for "pie in the sky" seems like a bad joke. Of course we would all like to take one pill one time and puff! we are cured. Well I'm afraid that is not going to happen anytime soon. As for non interferon treatments, most new drugs never make it to market. They prove to be either non-effective or have safety issues. To complete phase 2 and phase 3 testing usually takes about 5 years. So you can estimate if these new drugs do ever come to market that how long it will take.
Are far as risk vs benefit. The risk with a DAA and peg-interferon and ribavirin is largely known. The risk with any drug in phase 1 or 2 of a clinical trial is unknown. That is what a phase 2 trial is trying to determine. To imply that treatment is worse then the disease show a lack of basic knowledge of this disease and its affects on people’s lives. Sure people can believe what they want to believe but .... For example, OdenLovesLife states "Here is a report of a documented case of dementia-like symptom persistence after treatment. The report suggests that this degree of severity is rare, yet it duly comments that this treatment complication is not monitored. If something is not monitored the prevalence may be higher than currently acknowledged." The fact is if you accurately read the document, that the degree of severity is NOT rare in fact this particular case, 1 in 10,000s of thousands who have treated for HCV, is UNIQUE as "persistent dementia has not been reported previously." So if you can't correctly understand the article what is the point of using it in a false argument against treatment?
Of course treatment is contraindicated for certain individual based on there individual circumstances. This is nothing new it has been a given since the earliest days of treatment.
As the review of the article correctly states....
"Chronic hepatitis C virus (HCV) is a major cause of liver-related morbidity and mortality. Successful antiviral therapy with sustained viral clearance is associated with improved quality of life and reduced risk of liver complications such as cirrhosis and hepatocellular carcinoma. Therefore, it is recommended that every individual with chronic HCV infection be considered for antiviral therapy. However, there are relative and absolute contraindications to the use of pegylated interferon (IFN) and ribavirin, and treatment-related side effects are frequent and occasionally severe and irreversible. Consequently, the decision to pursue treatment requires a careful weighing of risks and benefits for each HCV-infected individual."
FYI: This review was written by my hepatologist of 4 years. So to say the she is against treatment for HCV in anyway is just flat out false.
The facts about hepatitis C are known. How a person chooses to interrupt them is another matter. All I can say from personal experience is not treating in time due to over exaggerated fears of interferon or other drug needs to be put into the real context of advanced liver disease, End-Stage Liver Disease and liver cancer. Having the possibility of stopping the progression of liver disease vs the suffering of End-Stage Liver Disease, trying getting a liver transplant before dying or dying of liver cancer is not something that can be compared to the risk of treatment. One is a temporary condition that other is either a life changing event or the end of life.
Hector
I find it ironic that so many of us have waited through the years for more effective treatment as many of us failed previous treatment(s) and now that it has arrived people are bickering over treatment and if and when someone should treat.
That people are still waiting for "pie in the sky" seems like a bad joke. Of course we would all like to take one pill one time and puff! we are cured. Well I'm afraid that is not going to happen anytime soon. As for non interferon treatments, most new drugs never make it to market. They prove to be either non-effective or have safety issues. To complete phase 2 and phase 3 testing usually takes about 5 years. So you can estimate if these new drugs do ever come to market that how long it will take.
Are far as risk vs benefit. The risk with a DAA and peg-interferon and ribavirin is largely known. The risk with any drug in phase 1 or 2 of a clinical trial is unknown. That is what a phase 2 trial is trying to determine. To imply that treatment is worse then the disease show a lack of basic knowledge of this disease and its affects on people’s lives. Sure people can believe what they want to believe but .... For example, OdenLovesLife states "Here is a report of a documented case of dementia-like symptom persistence after treatment. The report suggests that this degree of severity is rare, yet it duly comments that this treatment complication is not monitored. If something is not monitored the prevalence may be higher than currently acknowledged." The fact is if you accurately read the document, that the degree of severity is NOT rare in fact this particular case, 1 in 10,000s of thousands who have treated for HCV, is UNIQUE as "persistent dementia has not been reported previously." So if you can't correctly understand the article what is the point of using it in a false argument against treatment?
Of course treatment is contraindicated for certain individual based on there individual circumstances. This is nothing new it has been a given since the earliest days of treatment.
As the review of the article correctly states....
"Chronic hepatitis C virus (HCV) is a major cause of liver-related morbidity and mortality. Successful antiviral therapy with sustained viral clearance is associated with improved quality of life and reduced risk of liver complications such as cirrhosis and hepatocellular carcinoma. Therefore, it is recommended that every individual with chronic HCV infection be considered for antiviral therapy. However, there are relative and absolute contraindications to the use of pegylated interferon (IFN) and ribavirin, and treatment-related side effects are frequent and occasionally severe and irreversible. Consequently, the decision to pursue treatment requires a careful weighing of risks and benefits for each HCV-infected individual."
FYI: This review was written by my hepatologist of 4 years. So to say the she is against treatment for HCV in anyway is just flat out false.
The facts about hepatitis C are known. How a person chooses to interrupt them is another matter. All I can say from personal experience is not treating in time due to over exaggerated fears of interferon or other drug needs to be put into the real context of advanced liver disease, End-Stage Liver Disease and liver cancer. Having the possibility of stopping the progression of liver disease vs the suffering of End-Stage Liver Disease, trying getting a liver transplant before dying or dying of liver cancer is not something that can be compared to the risk of treatment. One is a temporary condition that other is either a life changing event or the end of life.
Hector
"It will take me some time to find, but I do have studies of patients who after 10-15 years of SVR with interferon, have no problems, many extra-hepatic manifestations directly associated with having HCV have gone away and overall quality of life has improved."
Lynda when you have time I would like to see those studies. No rush, we all have lives to live outside this forum, but it would be a good thing for those people who are wondering about this topic to see the details wouldn't it.
I can't find any formal scientific study that comprehensively covers quality of life improvements after HCV treatment with pegylated interferon and ribavirin. I seem to recall coming across one reference to improved energy levels about 5 years after SVR once but it was a vague statement alongside SVR and hepatic manifestation data. We can't just assume that a healthier liver equals better quality of life. What if other systems are damaged?
Did you treat with pegylated interferon? I had Schering Plough Peg-INTRON with Ribavirin for 14 weeks in 2008. Ceased due to inadequate response and SX. Prior to treatment I was informed categorically that apart from the occasional case of thyroid dysfunction and eyesight damage side effects go away completely. I wasn't tested for bone mineral density. As a perimenopausal female cycling enthusiast at the time I should have been. No baseline eye test either. When my specialist insisted that he wanted to do only one test at 12 weeks and another at 6 months but I should continue for a year even if the virus wasn't cleared I became very worried and switched to someone better. Now I have a very good specialist and the difference is phenomenal. Perhaps that will help you understand why I take the time to encourage people to be careful about this decision and seek a good physician.
Everybody here has some history whether or not it is visible initially. Some treatment sooner rather than later supporters have had friends die of liver failure. I respect them and their opinions whether I agree entirely or not.
Lynda when you have time I would like to see those studies. No rush, we all have lives to live outside this forum, but it would be a good thing for those people who are wondering about this topic to see the details wouldn't it.
I can't find any formal scientific study that comprehensively covers quality of life improvements after HCV treatment with pegylated interferon and ribavirin. I seem to recall coming across one reference to improved energy levels about 5 years after SVR once but it was a vague statement alongside SVR and hepatic manifestation data. We can't just assume that a healthier liver equals better quality of life. What if other systems are damaged?
Did you treat with pegylated interferon? I had Schering Plough Peg-INTRON with Ribavirin for 14 weeks in 2008. Ceased due to inadequate response and SX. Prior to treatment I was informed categorically that apart from the occasional case of thyroid dysfunction and eyesight damage side effects go away completely. I wasn't tested for bone mineral density. As a perimenopausal female cycling enthusiast at the time I should have been. No baseline eye test either. When my specialist insisted that he wanted to do only one test at 12 weeks and another at 6 months but I should continue for a year even if the virus wasn't cleared I became very worried and switched to someone better. Now I have a very good specialist and the difference is phenomenal. Perhaps that will help you understand why I take the time to encourage people to be careful about this decision and seek a good physician.
Everybody here has some history whether or not it is visible initially. Some treatment sooner rather than later supporters have had friends die of liver failure. I respect them and their opinions whether I agree entirely or not.
Wow, this thread has got pretty heated. I know we all have hep c (or had until recently) so we're known for our irritability. I'm certainly no exception. But let me say that I appreciate everyone's wish to tell the truth as they see it, and desire to share it in a helpful way with others. In my particular situation, I am very eager to begin treatment with PSI 938 and 7977 as my long term psoriasis condition is known to often be inflamed by interferon. My research on these two drugs has convinced me that they have the potential to usher in a new generation of treatment with extraordinarily high rates of success and modest side effects. For what it's worth, the market agrees. Check out what's happenened with Pharmasset stocks since the results from these nucleotides started coming in. More importantly, I would say that the docs at The Center for the Study of Hepatitis C in NYC, where I am a patient, clearly feel that a new dawn is coming, and they seem sophisticated reaearchers. Of course there are risks. We are guinea pigs. But there's mounting evidence to justify the enthusiasm of the advocates of all oral therapy.
Will, I should have said "surveys" rather than "studies". In that respect I was careless with my language last night. As far as I am concerned it is a problem that there is a dearth of formal studies that take into account a broader picture measuring quality of life after HCV treatment with PegIFN and Ribavirin. It’s funny because that does appear to be a consideration for oncology and MS patients where chronic fatigue gets a mention, but I digress. The results for HCV patient long term studies are always focussed solely on SVR and liver histology.
Monitoring of cognitive defects is not the core skill of gastroenterology and liver specialists. We can't blame them for sticking to things they can measure with lab tests as their criteria for success. Again, not surprising that monitoring is inadequate when a multidisciplinary approach is required to even define many of these problems. Psychiatrists, neurologists, endocrinologists, opthalmologists, and so on.
As a 54 year-old woman who is a potential retreatment patient I want to consider my well-being in a comprehensive sense though. During treatment, and afterwards.
If broader studies existed they might have drawn attention to things which are currently overlooked with the microscope lens turned on the liver and virus detection alone. Now that the DAAs are looking so promising (albeit early days) investigation in this area is less likely to be conducted. Interferon might be old news before the studies are even completed. There would be huge financial disincentives to conduct such studies unless it is to encourage more people to take up newer treatments.
Another point that hasn't been raised recently is that pegylated interferon toxicity is higher than the non-pegylated form, especially when combined with Ribavirin.
I have yet to find a copy of an Australian survey that covered QoL issues that I was referring to in my previous post. It may have been taken offline as it was some years ago. Willy50 posted this which is indicates that more people report feeling worse after treatment than before:
http://www.hepctrust.org.uk/Resources/HepC/HCV%20Reports/Post%20Tx%20Survey%20Report%202010.pdf
Here is a report of a documented case of dementia-like symptom persistence after treatment. The report suggests that this degree of severity is rare, yet it duly comments that this treatment complication is not monitored. If something is not monitored the prevalence may be higher than currently acknowledged.
http://www.clinicaladvances.com/article_pdfs/gh-article-200801-bernstein.pdf
If the scientific and medical communities are not looking at overall health and quality of life measures it naturally follows that only a few extreme cases will ever come to light.
I would like to repeat that I am not trying to unilaterally discourage or scare people who need to treat now with triple or double therapy. I just become very concerned when I read some of the literature designed for people considering treatment. The statements are oversimplified, biassed toward encouraging treatment, and downplay the risks. How can anyone say that almost everybody recovers fully when it hasn't been comprehensively measured? Surely if long-term side effects did not exist at all the topic would rarely come up in forums. I think the questions posted in the forums are enough to highlight that current SOC is something to be approached with caution. Surely, it would not be a good thing to encourage ill-prepared people to undertake triple therapy with the risk of developing resistance to the PIs.
Monitoring of cognitive defects is not the core skill of gastroenterology and liver specialists. We can't blame them for sticking to things they can measure with lab tests as their criteria for success. Again, not surprising that monitoring is inadequate when a multidisciplinary approach is required to even define many of these problems. Psychiatrists, neurologists, endocrinologists, opthalmologists, and so on.
As a 54 year-old woman who is a potential retreatment patient I want to consider my well-being in a comprehensive sense though. During treatment, and afterwards.
If broader studies existed they might have drawn attention to things which are currently overlooked with the microscope lens turned on the liver and virus detection alone. Now that the DAAs are looking so promising (albeit early days) investigation in this area is less likely to be conducted. Interferon might be old news before the studies are even completed. There would be huge financial disincentives to conduct such studies unless it is to encourage more people to take up newer treatments.
Another point that hasn't been raised recently is that pegylated interferon toxicity is higher than the non-pegylated form, especially when combined with Ribavirin.
I have yet to find a copy of an Australian survey that covered QoL issues that I was referring to in my previous post. It may have been taken offline as it was some years ago. Willy50 posted this which is indicates that more people report feeling worse after treatment than before:
http://www.hepctrust.org.uk/Resources/HepC/HCV%20Reports/Post%20Tx%20Survey%20Report%202010.pdf
Here is a report of a documented case of dementia-like symptom persistence after treatment. The report suggests that this degree of severity is rare, yet it duly comments that this treatment complication is not monitored. If something is not monitored the prevalence may be higher than currently acknowledged.
http://www.clinicaladvances.com/article_pdfs/gh-article-200801-bernstein.pdf
If the scientific and medical communities are not looking at overall health and quality of life measures it naturally follows that only a few extreme cases will ever come to light.
I would like to repeat that I am not trying to unilaterally discourage or scare people who need to treat now with triple or double therapy. I just become very concerned when I read some of the literature designed for people considering treatment. The statements are oversimplified, biassed toward encouraging treatment, and downplay the risks. How can anyone say that almost everybody recovers fully when it hasn't been comprehensively measured? Surely if long-term side effects did not exist at all the topic would rarely come up in forums. I think the questions posted in the forums are enough to highlight that current SOC is something to be approached with caution. Surely, it would not be a good thing to encourage ill-prepared people to undertake triple therapy with the risk of developing resistance to the PIs.
"Since Lynda has posted almost nothing about who she is or whether she has ever even been a patient, it is less clear where she is coming from."
Why should you know my treatment status to lend credence to what I have been saying? I have done extensive research and base my statements on facts. You have no prior treatment experience so what are you basing your statements on?
But if you must know, I treated in '06 unsuccessfully and do not have so much as pimple on my butt from interferon and ribavirin. NO POST TREATMENT SIDE EFFECTS and I'm NOT ONE of the lucky ones in that respect, I'm in the majority. I will treat with Incivek in the near future and as I said previously I'm a numbers person and the numbers are quite impressive.
Why should you know my treatment status to lend credence to what I have been saying? I have done extensive research and base my statements on facts. You have no prior treatment experience so what are you basing your statements on?
But if you must know, I treated in '06 unsuccessfully and do not have so much as pimple on my butt from interferon and ribavirin. NO POST TREATMENT SIDE EFFECTS and I'm NOT ONE of the lucky ones in that respect, I'm in the majority. I will treat with Incivek in the near future and as I said previously I'm a numbers person and the numbers are quite impressive.
Here is part of the trial contract that was revised and presentd to me me .when I was half way thru my own particular trial of BMS 790052 on Jan .5/2011....
Paragragh 9)
."A 55 year old patient developed bone marrow suppression and is now unable to make any blood cells.immune cells or platlets. This event has not improved at this time.Although there have been reports "rarely" with the use of peg INF it is currently not known what role BMS790052 played in this event.
Paragraph 10)
A 66 year old patient was noted to have rapid decreased neutrophils.red blood cells and platelets early in the treatment with BMS 790052 or placebo.Changes to the patients pegINF and RBV were initiated because of the potential of these drugs to cause such events. Around week 6 of therapy the patient was treated with intravenous fluid ,platelet transfusions,and blood transfusions. Shortly afterward the patient had symptoms of shortness of breath,swelling of the legs,and died suddenly afterwards. The role of BMS 790052 is to date unknown and currently being investigated
By putting this here I would certainly not want to alarm anyone taking any drug in a trial...it is only to illustrate that ...sometimes things just happen when they are conducting info. gathering data trials.....these are experiments...plain and simple. They show great promise ...but we must be patient.
curiouslady:
Thankfully I survived with little sides from this medication as we all hope you do but obvoiusly the data is just not anywere near complete yet
..
Will
Paragragh 9)
."A 55 year old patient developed bone marrow suppression and is now unable to make any blood cells.immune cells or platlets. This event has not improved at this time.Although there have been reports "rarely" with the use of peg INF it is currently not known what role BMS790052 played in this event.
Paragraph 10)
A 66 year old patient was noted to have rapid decreased neutrophils.red blood cells and platelets early in the treatment with BMS 790052 or placebo.Changes to the patients pegINF and RBV were initiated because of the potential of these drugs to cause such events. Around week 6 of therapy the patient was treated with intravenous fluid ,platelet transfusions,and blood transfusions. Shortly afterward the patient had symptoms of shortness of breath,swelling of the legs,and died suddenly afterwards. The role of BMS 790052 is to date unknown and currently being investigated
By putting this here I would certainly not want to alarm anyone taking any drug in a trial...it is only to illustrate that ...sometimes things just happen when they are conducting info. gathering data trials.....these are experiments...plain and simple. They show great promise ...but we must be patient.
curiouslady:
Thankfully I survived with little sides from this medication as we all hope you do but obvoiusly the data is just not anywere near complete yet
..
Will
"So by now it should be obvious what I am getting at. You are invested in the tx that you are currently doing. You naturally believe in it. You cannot do otherwise. It may very well work out for you and I hope it does. But I think you should get aware that your assessment of the risk is no longer objective."
I think that you are not reading my posts carefully. I am providing information so that people can know they have some choices. Both of us have our biases though I think mine is a bit more hopeful than yours. Since Lynda has posted almost nothing about who she is or whether she has ever even been a patient, it is less clear where she is coming from. However, I am sorry that you both think I am "bashing" the therapy as you put it. I am simply pointing out the obvious which anyone can read about if they stay on these forums for long enough. The sides are substantial and hurtful. If that is your only option, do it. It is better than doing nothing at all for many people and, just as obviously, many people will not qualify for these newer oral drugs either in trials or even when they get to market. So, in that sense, the drugs which are on the market are certainly very worthwhile and helpful for many, many people. And they shouldn't be kicked to the curb at all. I did not mean to imply this and do not want to be misunderstood. In fact, I hope that those who do have substantial liver disease and other problems will not wait it out for something which may not be helpful to them. But treating with the drugs currently on the market may not be the best option IMHO for everyone.
Once again, this is about not advising people to go elsewhere and disregard the suggestion of their physician when "wait and see" is a respectable recommendation for f=0-1.
I think that you are not reading my posts carefully. I am providing information so that people can know they have some choices. Both of us have our biases though I think mine is a bit more hopeful than yours. Since Lynda has posted almost nothing about who she is or whether she has ever even been a patient, it is less clear where she is coming from. However, I am sorry that you both think I am "bashing" the therapy as you put it. I am simply pointing out the obvious which anyone can read about if they stay on these forums for long enough. The sides are substantial and hurtful. If that is your only option, do it. It is better than doing nothing at all for many people and, just as obviously, many people will not qualify for these newer oral drugs either in trials or even when they get to market. So, in that sense, the drugs which are on the market are certainly very worthwhile and helpful for many, many people. And they shouldn't be kicked to the curb at all. I did not mean to imply this and do not want to be misunderstood. In fact, I hope that those who do have substantial liver disease and other problems will not wait it out for something which may not be helpful to them. But treating with the drugs currently on the market may not be the best option IMHO for everyone.
Once again, this is about not advising people to go elsewhere and disregard the suggestion of their physician when "wait and see" is a respectable recommendation for f=0-1.
"You are falling asleep at your desk and they will not allow you to drive a car anymore. You are having trouble putting coherent sentences together"
This sounds really serious to me. It must be hard coping at your job. You must be troubled and worried about this. I don't know what to advise but I think it is important to find out what is causing you to be so fatigued and having thought and speech difficulties. You might enlist your doctor's help to seriously investigate what is causing your symptoms and develop a real diagnosis. I am not at all sure this is from hepatitis c.
This sounds really serious to me. It must be hard coping at your job. You must be troubled and worried about this. I don't know what to advise but I think it is important to find out what is causing you to be so fatigued and having thought and speech difficulties. You might enlist your doctor's help to seriously investigate what is causing your symptoms and develop a real diagnosis. I am not at all sure this is from hepatitis c.
Well said dointime. Curiouslady1, you don't like anyone raining on your parade about the all oral treatment but you don't have a problem bashing triple therapy. If you expect us to reserve judgement you should do the same.
Have you ever traded the stockmarket? I ask because traders are a group who are well versed (or should be) in the psychology of risk. Any good trader knows to assess the risk of a trade before he/she puts it on and then hold fast to their get-out parameters no matter what. They do this because the human brain is hard wired to be unable to give an objective assessment of risk once the trade is on and the trader is invested in it. This applies to everybody, not just you and me. Even the great traders have been brought down by reassessing their risk mid-trade and changing their trade plan.
So by now it should be obvious what I am getting at. You are invested in the tx that you are currently doing. You naturally believe in it. You cannot do otherwise. It may very well work out for you and I hope it does. But I think you should get aware that your assessment of the risk is no longer objective.
dointime
So by now it should be obvious what I am getting at. You are invested in the tx that you are currently doing. You naturally believe in it. You cannot do otherwise. It may very well work out for you and I hope it does. But I think you should get aware that your assessment of the risk is no longer objective.
dointime
is that there are serious problems with people telling individuals who have 0-1 fibrosis that they should disregard the counsel of their personal physician when he/she tells them to wait and see and, rather, go to another doctor and demand treatment "
If someone wants to treat while they still have plenty of 'good' liver left it's up to them. If they don't want to wait until they are stage 3 / 4 and the fibrosis can make it more difficult to SVR why wouldn't they treat?
Because they are afraid of interferon?
Many people have treated, cured the disease and moved on with their lives. A few bad stories here and there does not make up the entire demographic of hepc treaters and it is irresponsible to imply so.
If someone wants to treat while they still have plenty of 'good' liver left it's up to them. If they don't want to wait until they are stage 3 / 4 and the fibrosis can make it more difficult to SVR why wouldn't they treat?
Because they are afraid of interferon?
Many people have treated, cured the disease and moved on with their lives. A few bad stories here and there does not make up the entire demographic of hepc treaters and it is irresponsible to imply so.
In the Phase IIs there will likely be a very high, perhaps close to 100% SVR as they have shown with the early pg and riba added (with no potentiated sides). Here is something from this mornings Pharmasset presentation. It is for investors but has a lot of clinical info. I couldnt get into the webcast. http://investor.pharmasset.com/events.cfm
Obviously, there is little SVR data with the all orals alone. However, there is good info that this treatment, even with the addition of ifn and riba is superior to what is on the market. But my point, lest it be overlooked, is that there are serious problems with people telling individuals who have 0-1 fibrosis that they should disregard the counsel of their personal physician when he/she tells them to wait and see and, rather, go to another doctor and demand treatment knowing that the treatment out there is not so great, the side effects can be awful and the chance of SVR is still an open question.
Obviously, there is little SVR data with the all orals alone. However, there is good info that this treatment, even with the addition of ifn and riba is superior to what is on the market. But my point, lest it be overlooked, is that there are serious problems with people telling individuals who have 0-1 fibrosis that they should disregard the counsel of their personal physician when he/she tells them to wait and see and, rather, go to another doctor and demand treatment knowing that the treatment out there is not so great, the side effects can be awful and the chance of SVR is still an open question.
After approx. 8 years ,tens of thousand of people were experimented on with the current P.I.,to the cost of hundreds of millions of dollars for the reasearch the facts are that a range of 69 to 94% of people with HCV Geno 1 will SVR (depending on many factors.)
Again ,although very early experiments look extremely promising for meds in the future (very possibly not for 5 years or so) there is no data yet that you will SVR on these. ..the study data will be compiled in the months and years to come......
Again ,although very early experiments look extremely promising for meds in the future (very possibly not for 5 years or so) there is no data yet that you will SVR on these. ..the study data will be compiled in the months and years to come......
Apparently, the several of you are not aware of how research is done and how it gets underway."
Wow for a brand new member you really should take the time to get to know the older members on here before you wag your tongue like that.
Just another incorrect statement on your behalf there.
Wow for a brand new member you really should take the time to get to know the older members on here before you wag your tongue like that.
Just another incorrect statement on your behalf there.
Apparently, the several of you are not aware of how research is done and how it gets underway. The information provided on this listserv about people's personal experience is invaluable and unless there is a dark strain of dishonesty running through it, should not be ignored. Of course, all of what you say is true in terms of it not being a carefully controlled empirical clinical study. However, people are not interested in waiting a year or two to see the outcome results of such studies. They wish to cut and paste and take what they know to make their decisions. One can make some very good deductions from what is posted here, the web sites that they are directed to as well as the results which have been forthcoming and case vignettes that are posted. For example, you know that 4 out of 4 people on this list got an RVR, 3 within 2 weeks, in a carefully controlled trial of all orals in which they are enrolled. This is a pretty good piece of evidence. Sure, the n is low and there is not enough time in to get a read on their getting SVR (we will be on the drugs for 5 more months) but it is a relatively random slice and early response is a decent predictor of SVR from what I have read. When I find out about the three other cases I know of, that will make 7. I will post it here. I find the skepticism just what I would expect from people who have had bad experiences. However, I would never want my younger sisters and brothers to go through the poor parenting that I went through just because I turned out ok and that is all I know. I would hope that they would have a better experience. When one has little or no fibrosis and their doc says they can wait; that should be much more influential than some of the opinions being forwarded here . . . get a new doc etc.
After approx. 8 years ,tens of thousand of people were experimented on with the current P.I.,to the cost of hundreds of millions of dollars for the reasearch the facts are that a range of 69 to 94% of people with HCV Geno 1 will SVR (depending on many factors.)
Again ,although very early experiments look extremely promising for meds in the future (very possibly not for 5 years or so) there is no data yet that you will SVR on these. ..the study data will be compiled in the months and years to come......
Again ,although very early experiments look extremely promising for meds in the future (very possibly not for 5 years or so) there is no data yet that you will SVR on these. ..the study data will be compiled in the months and years to come......
What is being missed is that this list serv is a study. "
LOL no this forum is not a study at all. It's a random assortment of people with opinions and nothing more than that.
Joining a clinical trial is hardly a sacrifice when, in some cases, the SOC carries more risk!!!"
We have seen many promising meds come and go over the years - usually those who particpate in a trial are out of options and view them as a last resort understanding that they might not lead to SVR, not people who are afraid of interferon. Especially with the new meds on board the odds of success are so high I can't imagine why a treatment naive person would even take the risk. Who knows what the long term effects of said new all oral meds might be nor whether they will indeed 'cure' a patient?
LOL no this forum is not a study at all. It's a random assortment of people with opinions and nothing more than that.
Joining a clinical trial is hardly a sacrifice when, in some cases, the SOC carries more risk!!!"
We have seen many promising meds come and go over the years - usually those who particpate in a trial are out of options and view them as a last resort understanding that they might not lead to SVR, not people who are afraid of interferon. Especially with the new meds on board the odds of success are so high I can't imagine why a treatment naive person would even take the risk. Who knows what the long term effects of said new all oral meds might be nor whether they will indeed 'cure' a patient?
Considering the multitude of pre-existing health problems you have that was probably a very wise choice but not everyone is like you. The decision to treat with triple therapy should be made by the individual and the treating physician and not based on the assessment of circumstances others provide.
Thankfully we rely on studies to help with our desicion making ...just like in a year or two people with HCV hopefully will review the study you are in to help them make decisions. Opinions are just that . conversation and opinion....not nearly as valuable....
Over and over again I read people calling for "studies to prove" this or that. What is being missed is that this list serv is a study. When I was fishing about wondering what to do it was this listserv and HCVsupport which convinced me to enroll in an all oral clinical trial. I no longer believe as I was told at first, that people on the listserv are the treatment failures or those with complaints alone. Many were just like me who came on to the site out of curiosity and stayed to tell of their experience. I hear too often of how sick people are or become once they start on the meds and how prepared everyone is to know what to do for anemia and rashes. That, combined with knowing your own body (already having skin problems or low blood pressure or being on the low side of Hgb) can help determine what is best for an individual. These side effects are hardly rare and, in an aging body, could take quite awhile to recover from. Joining a clinical trial is hardly a sacrifice when, in some cases, the SOC carries more risk!!! I was overjoyed to hear of the new drugs being approved earlier in the summer until I found out the cost and realized I could never put up with that.
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