Aa
When to start treatment?
This is my situation. I am 45 and in very good physical shape. I am type 1a. I have a high viral load of 7920000. I went had the biopsy last month (no big deal) and that came back grade 2, stage 1. I have given up alcohol and am now living a healthy lifestyle. My doctor wants me to treat now and I unsure. Also my wife just found out that she is pregnant,and I want to be there for her. I am thinking of waiting a year or two for a possible better treatment? Am I just kidding myself and putting of the inevitable?
I was instructed to have routine testing, PCR's yearly, and CT scans every 6 months. Biopsy every 2-3 years.. All this and I was one of the fortunate ones who obtained SVR..
But I hear that after 3 years, they kind of give up and send ya on your way!!
But I hear that after 3 years, they kind of give up and send ya on your way!!
Pecaboo - How terrible! I am so sorry this happened to you.
Kalio/Snook - So my take is even if I achieve SVR I would have to be tested on a somewhat regular basis for the rest of my life. That really S****. Its not enough to worry about the yearly pap, mamo and all the other wonderful things we get to test for!
Kalio/Snook - So my take is even if I achieve SVR I would have to be tested on a somewhat regular basis for the rest of my life. That really S****. Its not enough to worry about the yearly pap, mamo and all the other wonderful things we get to test for!
I am 27 years old, contracted HCV at age 19, and received treatement at age 23. I belive I had type 2b which was supposed to be the most "curable". I went through the Pegentron/Ribovivran combination theropy for 6 months. My viral load was only 10,000 to start with, and became non detectable after only a few weeks. I continued the treatment for 6 months and had a relativly easy time with it. I am now 8 weeks pregnant for the second time and have been told that the HCV is back to detectable levels. I am waiting to see my gastro doctor, but I am completely shocked that it is back. My doctor used the word cure also, and from what he told me I had a best case senerio. I don't know what happend but I do know that I was not reinfected with the virus. It had to have come back....
Yes, but as Kalio fails to comprehend when researching, is that HCV is still present in liver tissue. All the new studies are suggesting that the virus remains, in undetectable statis, just under the radar so to speak, hiding in liver tissue. As a memeber found out here the hard way. He was SVR, undetectable for over two years, yet when biopsied, HCV was found in his liver tissue. His Dr stated 75% of SVR patients will still have HCV present in liver tissue upon biopsy. The theory now among the medical commuinty, is that the combo tx may not in fact be a Cure, but more a "remission"..
I read that it is less than 2% of people who obtain SVR relapse after being clear over a year in one study and less than 1% in another. In other words, practically never.
Usually if a person clears it the only way to have it again is to be reinfected again through a new exposure.
Usually if a person clears it the only way to have it again is to be reinfected again through a new exposure.
There is so much controversy in remission vs cure when SVR is reached. Does anyone know what % of people who achieve SVR and have the virus return years later. My Dr. uses the term cured.
by the time the new drugs come out, if they do, you could be done for good with HCV!
at 45, if you wait 3-5 yrs for the 'better' drugs, and they don't pan out as expected, you would have reduced your shot at SVR with the present treatment. It is not an easy treatment, but it is manageable with a good team of doctors that include your PCP. It is up to you. Dr Palmer, recommends in her book (liverdisease.com) to treat while young and with mild damage. The sides are not as hard many times, you don't have age related conditions that have develped and can make things harder, and if the theory of virus hiding in cirrhotic tissue is true, the mildly damaged liver won't have that situation to contend with.
HCV is not just a liver disease or a condition related to how damaged it is, it is a blood disease, with the virus(and the body's immune response) circulating through every organ in your body. Many extra hepatic conditions have been linked to HCV. At such a low state of damage, if the tx is too painful or you do not respond to it, you can wait for other meds, if you do respond and can manage the sides, then you will be done by the time these new meds come out.
Make sure you have researched thoroughly.
I was a 1a, 51 at dx, treated, cleared, do not have to wait for NM283 or Vertex because TG, my hcv responded to this tx. I had to try.
at 45, if you wait 3-5 yrs for the 'better' drugs, and they don't pan out as expected, you would have reduced your shot at SVR with the present treatment. It is not an easy treatment, but it is manageable with a good team of doctors that include your PCP. It is up to you. Dr Palmer, recommends in her book (liverdisease.com) to treat while young and with mild damage. The sides are not as hard many times, you don't have age related conditions that have develped and can make things harder, and if the theory of virus hiding in cirrhotic tissue is true, the mildly damaged liver won't have that situation to contend with.
HCV is not just a liver disease or a condition related to how damaged it is, it is a blood disease, with the virus(and the body's immune response) circulating through every organ in your body. Many extra hepatic conditions have been linked to HCV. At such a low state of damage, if the tx is too painful or you do not respond to it, you can wait for other meds, if you do respond and can manage the sides, then you will be done by the time these new meds come out.
Make sure you have researched thoroughly.
I was a 1a, 51 at dx, treated, cleared, do not have to wait for NM283 or Vertex because TG, my hcv responded to this tx. I had to try.
As to how long ago I got the virus, my best guess is 25 years.I used and shared drugs back in the early eighties 80-83. As for my wife being pregnant, I thought the Riba was only harmful if I was using it during conception?
As to how long ago I got the virus, my best guess is 25 years.I used and shared drugs back in the early eighties 80-83. As for my wife being pregnant, I thought the Riba was only harmful if I was using it during conception?
I agree with Jim's advice above.. From information available at this time, give your stats, I would not treat right now.. I would wait, and in the meantime, pursue a healthy lifestyle. Refrain from alcohol consumption, fatty foods, and start excercising.. The added benefits of supplements might also be something to look in to, and might prove very beneficial. But just as treating with prescription medications, when using supplements, you need to monitor your progress with routine labwork and follow ups with a medical professional.
Supplements such as Viamin C, E, selenium, Zinc, Alpha Lipocic acid, and Milk thistle have been shown to be beneficial to liver health. Do alittle research, but don't jump in to anything. Best advice I can give you, is to explore ALL the options. New, better, more effective meds are in the pipeline.
Supplements such as Viamin C, E, selenium, Zinc, Alpha Lipocic acid, and Milk thistle have been shown to be beneficial to liver health. Do alittle research, but don't jump in to anything. Best advice I can give you, is to explore ALL the options. New, better, more effective meds are in the pipeline.
Just like to add two points to my previous post for those new to this discussion.
First, I'm not advocating an herbal/supplementation approach as part of a Watch n' Wait strategy. For some, simply leading a liver healthy lifestyle and periodic liver monitoring may make the most sense. But if do decide to go beyond that, try and do it as cautiously and scienfically as possible.
Second, I left out the part why some like myself don't suggest those with little or no liver damage treat with current drugs.
In short, the current drugs are not without risks. Besides what is often a harsh treatment for many, lingering (and possibly permanent) effects have been reported by many. These include thyroid damage, cognitive problems, and autoimmune issues such as joint and skin issues. Personally, I feel treatment has aged me 10 years, how much is physical and how much is psychological I don't know. But does it really matter? Very little efforts or funds have been spent to study the long term effects of treating with Peg Interferon and Ribavirin.
Having the virus has risks, getting rid of the virus also has risks. It's up to every individual to balance those risks out and come to a decision what's right for them.
-- Jim
First, I'm not advocating an herbal/supplementation approach as part of a Watch n' Wait strategy. For some, simply leading a liver healthy lifestyle and periodic liver monitoring may make the most sense. But if do decide to go beyond that, try and do it as cautiously and scienfically as possible.
Second, I left out the part why some like myself don't suggest those with little or no liver damage treat with current drugs.
In short, the current drugs are not without risks. Besides what is often a harsh treatment for many, lingering (and possibly permanent) effects have been reported by many. These include thyroid damage, cognitive problems, and autoimmune issues such as joint and skin issues. Personally, I feel treatment has aged me 10 years, how much is physical and how much is psychological I don't know. But does it really matter? Very little efforts or funds have been spent to study the long term effects of treating with Peg Interferon and Ribavirin.
Having the virus has risks, getting rid of the virus also has risks. It's up to every individual to balance those risks out and come to a decision what's right for them.
-- Jim
Jim Stated:
"For some reason, we tend to view supplements, herbs, vitamins, etc, as "natural" as opposed to rx medications which we view as, well, medications :) In fact, modern medicine often comes from plants, herbs, etc, so the distinction is in a sense arbitrary."
Boy, could not have stated it any better. How are most medications derived? Well, a researcher goes into the rain forest, or the bush, and sees what medicine men, or "bush" Dr's are using to treat and cure people. Then then run tests, trials, set proper dosages, etc....And bottle it up and market it to the public for RIDICULOUS profits. This is what medicine has become. Most presriptions meds, all have a natural plant or supplement background. They have just been refined, and synthetically reproduced in a lab.
"For some reason, we tend to view supplements, herbs, vitamins, etc, as "natural" as opposed to rx medications which we view as, well, medications :) In fact, modern medicine often comes from plants, herbs, etc, so the distinction is in a sense arbitrary."
Boy, could not have stated it any better. How are most medications derived? Well, a researcher goes into the rain forest, or the bush, and sees what medicine men, or "bush" Dr's are using to treat and cure people. Then then run tests, trials, set proper dosages, etc....And bottle it up and market it to the public for RIDICULOUS profits. This is what medicine has become. Most presriptions meds, all have a natural plant or supplement background. They have just been refined, and synthetically reproduced in a lab.
Snookmeister says: But just as treating with prescription medications, when using supplements, you need to monitor your progress with routine labwork and follow ups with a medical professional.
---------------------
This is a very important point. For some reason, we tend to view supplements, herbs, vitamins, etc, as "natural" as opposed to rx medications which we view as, well, medications :) In fact, modern medicine often comes from plants, herbs, etc, so the distinction is in a sense arbitrary.
As stated, try and lead a liver healthy lifestyle as best you can. This may include abstaining or moderating alcohol, keeping your ideal weight, eating healthy, regular exercise, stopping smoking, reducing stress in your life, etc.
As to vitamins, supplement, herbs, etc, use reasonable caution, because with medications -- different supplements can have a different effect on people.
For example, many of us are on a standard multi-vitamin without iron, as recommended by our doctors. Some are on widely used herbs like milk thistle and most reports good tolerability in most cases. Then there are other supplementations probably covered in the book Snookmeister mentioned by Dr. Gish and Misha Cohen. And then there are the herbal therapies used in China for thousands of years and more recently re-packaged here in the United States in more recognizable formulations and now in some trials.
My personal opinion is that once you go beyond the multi-vitamin without iron stage, notify your doctor what you're taking and minimially come up with a reasonable schedule to monitor liver enzymes. If you can't find a doctor that will work with you, consider seeking another. My present and past hepatologist both said they would support any herbal experimentation but they wanted to know exactly what I was doing so it could be monitored.
If it's something like adding milk thistle which is widely used, maybe monitoring enzymes monthly for a couple of months makes sense and then yearly. If you take more potent herbs, I don't think bi-monthly or even weekly monitoring of enzymes is excessive in the beginning. These are not recommended schedules, just how I might approach it.
Lastly, you "watch" , as in watch n' wait. My current doctors main pick against herbs is not the herbs themselves, but that some people may delay treatment too long relying on the herbs to stall or reverse their fibrosis. Periodic liver biopsy and/or newer tests like Fibroscan and/or newer blood marker tests like Fibrosure; can keep an herbal/supplementation plan real. If the testing shows reversal, no progression, or progression at a rate that you and your doctor can tolerate -- then by all means continue. However, if testing shows your liver damage has progressed to whatever cut-off point you're comfortable with (for me it would be stage 3) or is progressing at a faster rate than you're comfortable with, then it's probably time to start thinking about more conventional therapy.
Speaking of more conventional therapy, hopefully that will be improving soon. In fact, preliminary SVR data from the Vertex trials will be available early in 2007. By the end of 2007, all of us should have significantly more information on these new drugs to help base any treat or not-to-treat decision on.
In my opinion, if there ever was a time in history for those without significant liver damage to wait one more year before deciding to treat with peg interferon and ribavirin, this is the time.
-- Jim
---------------------
This is a very important point. For some reason, we tend to view supplements, herbs, vitamins, etc, as "natural" as opposed to rx medications which we view as, well, medications :) In fact, modern medicine often comes from plants, herbs, etc, so the distinction is in a sense arbitrary.
As stated, try and lead a liver healthy lifestyle as best you can. This may include abstaining or moderating alcohol, keeping your ideal weight, eating healthy, regular exercise, stopping smoking, reducing stress in your life, etc.
As to vitamins, supplement, herbs, etc, use reasonable caution, because with medications -- different supplements can have a different effect on people.
For example, many of us are on a standard multi-vitamin without iron, as recommended by our doctors. Some are on widely used herbs like milk thistle and most reports good tolerability in most cases. Then there are other supplementations probably covered in the book Snookmeister mentioned by Dr. Gish and Misha Cohen. And then there are the herbal therapies used in China for thousands of years and more recently re-packaged here in the United States in more recognizable formulations and now in some trials.
My personal opinion is that once you go beyond the multi-vitamin without iron stage, notify your doctor what you're taking and minimially come up with a reasonable schedule to monitor liver enzymes. If you can't find a doctor that will work with you, consider seeking another. My present and past hepatologist both said they would support any herbal experimentation but they wanted to know exactly what I was doing so it could be monitored.
If it's something like adding milk thistle which is widely used, maybe monitoring enzymes monthly for a couple of months makes sense and then yearly. If you take more potent herbs, I don't think bi-monthly or even weekly monitoring of enzymes is excessive in the beginning. These are not recommended schedules, just how I might approach it.
Lastly, you "watch" , as in watch n' wait. My current doctors main pick against herbs is not the herbs themselves, but that some people may delay treatment too long relying on the herbs to stall or reverse their fibrosis. Periodic liver biopsy and/or newer tests like Fibroscan and/or newer blood marker tests like Fibrosure; can keep an herbal/supplementation plan real. If the testing shows reversal, no progression, or progression at a rate that you and your doctor can tolerate -- then by all means continue. However, if testing shows your liver damage has progressed to whatever cut-off point you're comfortable with (for me it would be stage 3) or is progressing at a faster rate than you're comfortable with, then it's probably time to start thinking about more conventional therapy.
Speaking of more conventional therapy, hopefully that will be improving soon. In fact, preliminary SVR data from the Vertex trials will be available early in 2007. By the end of 2007, all of us should have significantly more information on these new drugs to help base any treat or not-to-treat decision on.
In my opinion, if there ever was a time in history for those without significant liver damage to wait one more year before deciding to treat with peg interferon and ribavirin, this is the time.
-- Jim
Hi.....Onaprettypoison
How long do you think you had hep c. You are only stage 1. I am just curious to know if you have an idea of how long. Please don't be offended about the question some go crazy wondering when they contracted others know the time they did. I am 37 and i now i contracted it when i was 17 . I remember being sick from it . I shot dope back then for about three yrs. Also way to go on treatment! i plan to treat no matter the out come of my biopsy.
How long do you think you had hep c. You are only stage 1. I am just curious to know if you have an idea of how long. Please don't be offended about the question some go crazy wondering when they contracted others know the time they did. I am 37 and i now i contracted it when i was 17 . I remember being sick from it . I shot dope back then for about three yrs. Also way to go on treatment! i plan to treat no matter the out come of my biopsy.
I am treating right now - 46/48 - 1a, with 1/0 - and I have not felt bad on treatment with the help of rescue drugs (for anemia and sleep). I attribute my easy time of it due to the low damage level I had. I understand my odds of clearing are also better. I was undetectible at weeks 12 & 24 and will have another viral load run in 6 weeks,4 weeks post treatment.
You would have to be extremely careful treating now with a pregnant wife. Riba is not good for fetuses and pregnant women.
You would have to be extremely careful treating now with a pregnant wife. Riba is not good for fetuses and pregnant women.
Hi, this is a very hard teatment to undergo, And at stage 1 you do have time to wait. The new treatment is just around the bend. It is a very personal decision. But after treating once and getting ready to treat again. Only because I don't have time to wait (stage 4). If I was in your shoes I would wait. But you have to weigh out the pro's and con's for yourself. good luck on your jouney. God Bless
this is a very contoversial topic.
i just finished tx at stage 3.3 and never would have done it at stage 1. if i do not clear i will not retreat till something else comes along. there are 3 major drug companies that are in 3rd phase trials for a tx that will be faster, easier and almost 100% sure to work. if it pans out it should be 2-3 years away from approval. IF. you have plenty of time to wait to at least think about it. i spent the last year of my life on the couch,in a fog fighting sides and i do not have that many years to waste. there are also many drugs to replace riba that will not have the bad effects on the way. a major drug co. just invested several hundred million to get the european rights to vx950 so some informed people have hope. like jim said only 50% of gene 1's get svr. research it. vx950.
bobby
i just finished tx at stage 3.3 and never would have done it at stage 1. if i do not clear i will not retreat till something else comes along. there are 3 major drug companies that are in 3rd phase trials for a tx that will be faster, easier and almost 100% sure to work. if it pans out it should be 2-3 years away from approval. IF. you have plenty of time to wait to at least think about it. i spent the last year of my life on the couch,in a fog fighting sides and i do not have that many years to waste. there are also many drugs to replace riba that will not have the bad effects on the way. a major drug co. just invested several hundred million to get the european rights to vx950 so some informed people have hope. like jim said only 50% of gene 1's get svr. research it. vx950.
bobby
Do you have other children? you know with this treatment your in for a year? how long do you think you have had this? im thinking will she need you more while she is preggers or after the babys 3mths old ? IN three years I went from stage 1 viral load of 1,000,000 on first bx to stage 2 with a viral load of 15,000,000 im also 1a and have decided to treat because i thought the dragon was starting rear its ugly head 41 with 5 kids My choice I felt was start fighting before it really started beating me....and so far so good clear at 12 wks and 24 wks am on shot 30/48.
what im trying to say is that you never know how this virus is going to go, and if this is your first baby, you have 9 mths before he or she is born by that time you will be on the down side of tx, and will know if you are a responder or not..and you maybe rid of the virus by the time your babys 3mths old , that would be wonderful....
what im trying to say is that you never know how this virus is going to go, and if this is your first baby, you have 9 mths before he or she is born by that time you will be on the down side of tx, and will know if you are a responder or not..and you maybe rid of the virus by the time your babys 3mths old , that would be wonderful....
No. Watching and waiting is a reasonable choice for someone stage 1, especially with genotype 1, the hardest and longest to treat genotype. Being there for the baby and wife is also a factor as it's hard to determine how much activity you will be able to handle while treating. Doctors as well as folks here are divided on the issue of treating those geno 1's with little or no liver damage. Based on what I've read and my own treatment experience, I wouldn't treat right now if I were in your shoes. Others here I'm sure will disagree. But whatever you decide, take your time and research things out. Read the archives here. Visit other websites. Even get another professional opinion if time, insurance and finances allow. Make the treat or wait decision on YOUR timetable, not your doctors, not anyone else's.
Good luck and all the best.
-- Jim
Good luck and all the best.
-- Jim
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