Aa
Should I treat?? Advice please
hello,
this is my first posting here + hope you don
this is my first posting here + hope you don
Money said prev: "I was interested to read that type 1's with a low VL may be able to treat for 24 weeks - if clear 4 weeks into treatment"
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Yes, indeed, and you fall well below the threshold for low viral load. One strategy then might be to risk 4-weeks of treatment and run your PCR. If it comes out non-detectible, then treat for another twenty weeks and be done. If it comes out dectible, then quit to fight another day, keeping your losses small. In this scenario, I'd probably use whatever Pegalayted Inteferon the study was based on.
That said, 24 weeks can still be a very long time on these drugs, at least for many of us. Given your rural situation -- should you decide to treat -- you will really need to give a lot of thought to back up plans in case the treatment incapacitated you to the point of not being able to drive around the kids, etc. Many people work and live normal lives through treatment, and other are unable to work and have to significantly modify their lives while being treated.
Whatever you decide, take your time and once you decide, don't look back only forward. The right decision is the right decision for you.
-- Jim
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Yes, indeed, and you fall well below the threshold for low viral load. One strategy then might be to risk 4-weeks of treatment and run your PCR. If it comes out non-detectible, then treat for another twenty weeks and be done. If it comes out dectible, then quit to fight another day, keeping your losses small. In this scenario, I'd probably use whatever Pegalayted Inteferon the study was based on.
That said, 24 weeks can still be a very long time on these drugs, at least for many of us. Given your rural situation -- should you decide to treat -- you will really need to give a lot of thought to back up plans in case the treatment incapacitated you to the point of not being able to drive around the kids, etc. Many people work and live normal lives through treatment, and other are unable to work and have to significantly modify their lives while being treated.
Whatever you decide, take your time and once you decide, don't look back only forward. The right decision is the right decision for you.
-- Jim
Hi, this is only my two cents, you'll get quarters here! This is a big cr**p shoot either way for someone like you, with great reasons to treat and to "watchfully" wait. I do have symptoms (mixed with menopause) so that's why I'm on the fence,(I have stage 1 damage) but with someone like you with no symptoms and such great stats, your age, I'd wait.
One thing I hate to bring up - because so many people have treated, are treating or about to treat - they just don't know the full extent of the damage the actual "meds" can do, even if you do achieve SVR...over the long term. And we're talking about a 50% chance of clearance for a geno 1. These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer? (It just stands to reason the longer you take them the more potential for bodily damage that "might" manifest later on, one would think.) Have the meds themselves caused damage that being an older age would manifest? Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway, it's always best to be positive...I'm just not sure you have to.
It's also a question of windows of opportunity. If you were older now your window would be smaller, but you're relatively young. And of course the flip-side of that is that you have a greater chance of clearing the younger your immune system is. Add to that the question of these new less harsh drugs and when they are coming on the scene, they'll be available a lot sooner if you manage to get on a trial... So welcome to "The Great Dillema" we low to no damage people have to face.
In terms of low bx grades...a lot of this will depend on who you talk to as well. The people who are happy and cleared and have gone on with their lives as usual will tend to be much more protreatment... obviously. Whereas others who have been negatively affected by the drugs and haven't even cleared will tend to be a little less encouraging about them, after all, they could of waited.
Some of this will depend on yourself of course...are you the type who will be able to withstand the worrying that is inherent in the "watchful waiting" course? Can you be relatively "serene" about it all over the long term? Or would you feel much better about the decision of just going ahead and treating and getting it over with? How tolerant will you be of the discomfort that will "probably" come about in undergoing treatment? Let's be honest here, many people experience side effects, some pretty harsh, though there are some who report they were negligible and many say they were doable.
You can at least afford to ask yourself these questions beforehand, others who are at higher biopsy grades unfortunately don't have the luxury. As has been said, you will get a lot of support and experience here, good luck in whatever you decide. Just one woman's opinion.
One thing I hate to bring up - because so many people have treated, are treating or about to treat - they just don't know the full extent of the damage the actual "meds" can do, even if you do achieve SVR...over the long term. And we're talking about a 50% chance of clearance for a geno 1. These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer? (It just stands to reason the longer you take them the more potential for bodily damage that "might" manifest later on, one would think.) Have the meds themselves caused damage that being an older age would manifest? Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway, it's always best to be positive...I'm just not sure you have to.
It's also a question of windows of opportunity. If you were older now your window would be smaller, but you're relatively young. And of course the flip-side of that is that you have a greater chance of clearing the younger your immune system is. Add to that the question of these new less harsh drugs and when they are coming on the scene, they'll be available a lot sooner if you manage to get on a trial... So welcome to "The Great Dillema" we low to no damage people have to face.
In terms of low bx grades...a lot of this will depend on who you talk to as well. The people who are happy and cleared and have gone on with their lives as usual will tend to be much more protreatment... obviously. Whereas others who have been negatively affected by the drugs and haven't even cleared will tend to be a little less encouraging about them, after all, they could of waited.
Some of this will depend on yourself of course...are you the type who will be able to withstand the worrying that is inherent in the "watchful waiting" course? Can you be relatively "serene" about it all over the long term? Or would you feel much better about the decision of just going ahead and treating and getting it over with? How tolerant will you be of the discomfort that will "probably" come about in undergoing treatment? Let's be honest here, many people experience side effects, some pretty harsh, though there are some who report they were negligible and many say they were doable.
You can at least afford to ask yourself these questions beforehand, others who are at higher biopsy grades unfortunately don't have the luxury. As has been said, you will get a lot of support and experience here, good luck in whatever you decide. Just one woman's opinion.
All I can add is: you are in a good position to tx. You don't know what kind of insurance you will have in the future or whethter you can get insurnace in the future w/the hep c. You also will never know how much it effects you until are rid of the virus.
People who were infected @ birth and have never done drink/drugs are @ very advanced stages. A friend who did not treat b/transplanted went from new perfect liver to a stage 3 in less than 10 mo. Many women who have waited and watched found their damage went thru 2 or more grades/stages in a matter of yrs.
And anyone who is infected now and doesn't think the virus and its presenting symptoms and accompaning damage isn't impacting their general well being and overall mental, emotional and physical health is an idiot!
Beleive me, I too thought that I had no 'symptoms', and I was end stage. B/being 3yrs svr, I can't believe the differece. It seemed for a yr or so, all my old wounds-broken bones, etc-rehealed. I actually became the person I always knew I was. The emotional and mental benefits and stability and serenity almost out weigh the physical benefits.
Would you let your child live w/a progressive, fatal disease b/c curing it would not fit in w/your lifestyle-that's all that's holding you back-percieved changes in your current lifestyle.
And Teenagers are much harder than small ones. And much less sympathetic than younger ones. So tx won't be any easier when you are really sick and the kids are older.
People who were infected @ birth and have never done drink/drugs are @ very advanced stages. A friend who did not treat b/transplanted went from new perfect liver to a stage 3 in less than 10 mo. Many women who have waited and watched found their damage went thru 2 or more grades/stages in a matter of yrs.
And anyone who is infected now and doesn't think the virus and its presenting symptoms and accompaning damage isn't impacting their general well being and overall mental, emotional and physical health is an idiot!
Beleive me, I too thought that I had no 'symptoms', and I was end stage. B/being 3yrs svr, I can't believe the differece. It seemed for a yr or so, all my old wounds-broken bones, etc-rehealed. I actually became the person I always knew I was. The emotional and mental benefits and stability and serenity almost out weigh the physical benefits.
Would you let your child live w/a progressive, fatal disease b/c curing it would not fit in w/your lifestyle-that's all that's holding you back-percieved changes in your current lifestyle.
And Teenagers are much harder than small ones. And much less sympathetic than younger ones. So tx won't be any easier when you are really sick and the kids are older.
Forsee said prev: "These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer?... Have the meds themselves caused damage... Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway..., it's always best to be positive...I'm just not sure you have to.
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Funny because I had this same discussion with myself this morning as I indulging in a little self-pity reflecting on what treatment has done to me this past six months. Being run over by a truck is a good analogy.:) But as stage 2-3 I'm at peace with my decision whatever happens. After a lot of thought and years of delay it seemed "time" to treat regardless of the risks. But frankly, I just can't see how all these drugs in my system cannot leave some sort of long-term scar. I truly hope I am 100% wrong.
MoneyPenney -- Forseegood says it very well. Take your time and get real comfortable with your decision because it does have ramifications either way.
-- Jim
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Funny because I had this same discussion with myself this morning as I indulging in a little self-pity reflecting on what treatment has done to me this past six months. Being run over by a truck is a good analogy.:) But as stage 2-3 I'm at peace with my decision whatever happens. After a lot of thought and years of delay it seemed "time" to treat regardless of the risks. But frankly, I just can't see how all these drugs in my system cannot leave some sort of long-term scar. I truly hope I am 100% wrong.
MoneyPenney -- Forseegood says it very well. Take your time and get real comfortable with your decision because it does have ramifications either way.
-- Jim
I will probably have my blood draw on the morning of the 7th - that will be exactly 12 wks peg & copeg. The 4-week PCR took almost 2 weeks to get back (boo). Hope I do as well as you.
Kathy
Kathy
aaaah...don't know for sure but I think I just might of been called an idiot, ha ha! No worries. For every person who says they know someone who progressed rapidly in stages within a small amount of time, there is another person who knows many who are in their late 50s and 60's with low liver damage. I know I do. Some have treated and not responded, some never have treated. That's just the name of the game with this disease, it's a l l over the map. We have to rely on these small studies for statistics to get any grasp of consequences, trends, variables, etc.
Believe me, if I were assured of having even and 80% chance of clearing, I'd jump on it like a monkey. Otherwise, there are many, many factors to weigh, I believe I went into it "ad nauseum" in my last post. And being a woman, my odds are better at lasting this out till the better meds come along. There is also some evidence that being a stage 1 at my age of 52 might mean that my immune system is doing a good job of keeping the virus in tow. I also take darn good care of my immune system, and I have for a very long time. That's gotta count for something, considering the new studies about anti-oxidant use and the immune system, I'll post the URLs later, it was on the AP yesterday.
Unfortunately, there is also some evidence that a person having it at birth was, by virtue of that fact, born with an immune system that was somewhat compromised by the virus. That may or maynot have some impact on the long term outcome.
This is not to say that I am not treating, depends on a few things. But like I said, I'm older than the person in question and I do have a few symptoms. Ultimately we are all masters of our own ship. My heart goes out to all who suffer with this disease, let's hope that soon we have more options available to us all, and that we all hold together as a community to help one another, we're not getting a lot of help from the outside, maybe you've noticed. Peace and love to you all.
Believe me, if I were assured of having even and 80% chance of clearing, I'd jump on it like a monkey. Otherwise, there are many, many factors to weigh, I believe I went into it "ad nauseum" in my last post. And being a woman, my odds are better at lasting this out till the better meds come along. There is also some evidence that being a stage 1 at my age of 52 might mean that my immune system is doing a good job of keeping the virus in tow. I also take darn good care of my immune system, and I have for a very long time. That's gotta count for something, considering the new studies about anti-oxidant use and the immune system, I'll post the URLs later, it was on the AP yesterday.
Unfortunately, there is also some evidence that a person having it at birth was, by virtue of that fact, born with an immune system that was somewhat compromised by the virus. That may or maynot have some impact on the long term outcome.
This is not to say that I am not treating, depends on a few things. But like I said, I'm older than the person in question and I do have a few symptoms. Ultimately we are all masters of our own ship. My heart goes out to all who suffer with this disease, let's hope that soon we have more options available to us all, and that we all hold together as a community to help one another, we're not getting a lot of help from the outside, maybe you've noticed. Peace and love to you all.
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