Aa
BIOP RESULTS
I AM 54 HAD BIOPSY 15YEARS AGO WHICH SHOWED MINIMAL PORTAL FIBROSIS. JUST HAD ANOTHER AND SHOWED STAGE 1 WITH MINIMAL FIBROSIS.DOCTOR RECOMENDS 6 MONTH FOLLOW UPS WITH BIOPSY EVERY 5 YEARS. I HAVE THE VIRUS AT LEAST 35 YEARS. DO YOU GUYS THINK ITS A BETTER IDEA TO TAKE THE MEDS.
I beg to differ with jm(what a surprise, ;-}) in the assessment of effectiveness. had I done that, I would not be SVR today.
If you are not having a terrible, unbearable time and endangering organs, bone marrow, etc. Stay the course even if no 2 log drop by week 12, even. I had a 1.82 log drop at wk 12. I wanted to quit so many times, but I wanted HCV gone for good more. My counts were decent, thyroid holding, needed Procrit at month 3, and pain meds, but I was able to finish 72 shots and the bugger is either still hiding in fear or GONE for good.
Again, had I follow an advise like JM's, I would not be at this point today. I would still be learnig to live with HCV and staring at the little orange labels in my medical charts that alerted people of my status. After my yrs PCR, I am going to ask them to remove them!
I am warning all considering tx that you will feel like quitting many times, I don't think anybody I met did not get that thought.
If you are not having a terrible, unbearable time and endangering organs, bone marrow, etc. Stay the course even if no 2 log drop by week 12, even. I had a 1.82 log drop at wk 12. I wanted to quit so many times, but I wanted HCV gone for good more. My counts were decent, thyroid holding, needed Procrit at month 3, and pain meds, but I was able to finish 72 shots and the bugger is either still hiding in fear or GONE for good.
Again, had I follow an advise like JM's, I would not be at this point today. I would still be learnig to live with HCV and staring at the little orange labels in my medical charts that alerted people of my status. After my yrs PCR, I am going to ask them to remove them!
I am warning all considering tx that you will feel like quitting many times, I don't think anybody I met did not get that thought.
Sorry about your tx problems and it's important you're telling it like it is.
Your story is is like many, many others. Sure, some people fly through treatment with little or no problems. But many like yourself (and myself) end up in what can accurately be described sometimes as a living hell. And there are all too many posts about people still having side effects when treatment is over.
So it gets personal with me when I hear some people say "treat, treat, treat" regardless of genotype, liver damage, etc., etc.
Like most here, I don't believe in a cookie cutter approach. I believe in *individualized* treatment that can include double-dosing, infergen, extended treatment, weight-based riba, early Procrit and Neupogen intervention, etc.
But individualized treatment also means some people probably shouldn't treat. Especially those genotype 1a's and 1b's with little or no liver damage. Especially today when for the first time newer and better treatments are realistically only a few years away.
We all want to get rid of the virus, but trying to get rid of it "at all costs" IMO is based more on emotion than good medicine.
Your story is is like many, many others. Sure, some people fly through treatment with little or no problems. But many like yourself (and myself) end up in what can accurately be described sometimes as a living hell. And there are all too many posts about people still having side effects when treatment is over.
So it gets personal with me when I hear some people say "treat, treat, treat" regardless of genotype, liver damage, etc., etc.
Like most here, I don't believe in a cookie cutter approach. I believe in *individualized* treatment that can include double-dosing, infergen, extended treatment, weight-based riba, early Procrit and Neupogen intervention, etc.
But individualized treatment also means some people probably shouldn't treat. Especially those genotype 1a's and 1b's with little or no liver damage. Especially today when for the first time newer and better treatments are realistically only a few years away.
We all want to get rid of the virus, but trying to get rid of it "at all costs" IMO is based more on emotion than good medicine.
bottom line is; if you want to rid yourself of the virus and wonder what today's meds will do to you, there is no way to tell which one will you be until you try them. I went in with the thought that if it truly got bad and endanger major organs, I would stop, because I could. Each day you want to quit, and each day you realize you can do it one more time. It is a day to day affair. It is not easy, if it was, everyone would jump on the bandwagon.
Keep in mind that when you read people having side effects after tx, it is not always because they appeared during tx. Many of us had blossoming conditions in various stages of development due to hcv, many that we did not know were there until the meds enhanced them. If you truly want the full pic, ask them if they had these before tx.
It is a risk one way or another if tx is optional, you could live with hcv with no extrahepatic symptoms or you could develop cirrhosis or ESLD in only 3 yrs like at least two people have posted here. You roll the dice.
Keep in mind that when you read people having side effects after tx, it is not always because they appeared during tx. Many of us had blossoming conditions in various stages of development due to hcv, many that we did not know were there until the meds enhanced them. If you truly want the full pic, ask them if they had these before tx.
It is a risk one way or another if tx is optional, you could live with hcv with no extrahepatic symptoms or you could develop cirrhosis or ESLD in only 3 yrs like at least two people have posted here. You roll the dice.
"...if you want to rid yourself of the virus and wonder what today's meds will do to you, there is no way to tell which one will you be until you try them..."
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Cuteus,
To an extent I agree with you here, as one possible strategy. In other words, try the meds, as you may be one of the lucky ones not only with very tolerable sx but someone who clears the virus early.
Where we disagree, is that I wouldn't encourage type 1's with very little liver damage to endure treatment if things started getting too rough. Nor would I urge them into extended treatment, or more agressive dosing should they not have an early viral response. In fact, if a stage 0 or 1 didn't have an EVR by week #4, they might consider quitting at that point.
To me, the more agressive strategies, above, make more sense for those with severe liver damage or cirrhosis. Stage 0's and 1's have time to wait. 3's and 4's may not.
Having said this, I applaud your personal attitude toward treatment and the determination and strength you obviously have.
In the end, to treat or not to treat is a very personal decision with no right or wrong answers.
______________
Cuteus,
To an extent I agree with you here, as one possible strategy. In other words, try the meds, as you may be one of the lucky ones not only with very tolerable sx but someone who clears the virus early.
Where we disagree, is that I wouldn't encourage type 1's with very little liver damage to endure treatment if things started getting too rough. Nor would I urge them into extended treatment, or more agressive dosing should they not have an early viral response. In fact, if a stage 0 or 1 didn't have an EVR by week #4, they might consider quitting at that point.
To me, the more agressive strategies, above, make more sense for those with severe liver damage or cirrhosis. Stage 0's and 1's have time to wait. 3's and 4's may not.
Having said this, I applaud your personal attitude toward treatment and the determination and strength you obviously have.
In the end, to treat or not to treat is a very personal decision with no right or wrong answers.
TY jm, yes, that is our main disagreement, as I see your point in that one also. It is just that when you invest any time, money and effort in the tx, the person has gone in with full knowledge of what the meds are about after weighing things, has emotionally committed, and are asking for ways to continue coping and tips on how to accomplish their ultimate goal, I can not bring myself to tell them, throw all that effort away and quit. If someone would have told me that I would have shown true riba/latin/perimenopause rage!!
I haven't even had the bx yet - I'm confident I will have a bleeding problem. Hope to use the fibrosure & maybe ct. I am reasonably strong, but need to improve odds (weight, no alcohol for 6 months). What I really want is the vx-950 tx. I'm on Kaiser which I'm soooo glad I got on. Expensive, but in our case, worth it. I don't want to wait until I fall apart (liver or otherwise) or experience some random hit from life.
So - to wait for vx-950 (try for a clinical trial) & risk further deterioration or endure tx on currently available meds (very scary). I'll just keep learning as much as I can over the coming months as I decide. All input is welcome.
So - to wait for vx-950 (try for a clinical trial) & risk further deterioration or endure tx on currently available meds (very scary). I'll just keep learning as much as I can over the coming months as I decide. All input is welcome.
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